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Long-Term Treatment Side Effects – Patient Input Requested!!
Long-Term Treatment Side Effects – Patient Input Requested!!
By: DrAttai
Tags: , ,
Mar 11, 2014

Dr. Eric Whitacre is a past-president of the American Society of Breast Surgeons. He is the developer of the quality reporting program used by ASBrS members. He asked me if our community would be interested in providing information for an upcoming talk at our annual meeting on long-term complications of breast cancer therapy, and my response was YES! Here is the request from Dr. Whitacre:

I have been asked to give a brief presentation at the upcoming meeting of the American Society of Breast Surgeons entitled  “Chronic post operative complications” and I am seeking input from patients.

The nature of the traditional surgical training curriculum is to consider complications things we were taught to report at weekly “morbidity” conferences – things like bleeding after surgery or severe infections.  With experience, surgeons learn about longer-term complications – chronic pain, lymphedema, and cosmetic issues for example – but these are “as seen” by the surgeons.

I would like to know more about long-term complications from breast surgery from the patient perspective.   This would include anything from the topics listed above to other things such as problems with shared decision making (the “if I had only known” issue) to uncertainty about recommended long-term cancer follow up, such as explicit structured care or survivorship plans.

As the presentation is brief (10-12 minutes) I will not be able to present many details, but reminding the audience that the patient experience is paramount is one of my goals.

If you prefer for privacy reasons not to respond on the blog, please feel free to email me at ewhitacre@gmail.com.  Any responses will be kept in complete confidence and no names or other potentially identifying information will be presented.

Thank you all in advance for your input,

Eric Whitacre, MD

Comments

Jody Schoger

Date: 11 Mar, 2014

Dr. Whitacre, Thanks for your effort here to improve health care by talking to the people who can tell you the most -- the patients. We've heard so much in our #BCSM chats from many experiencing a gamut of late-term impacts from surgery -- from chronic pain to lymphadema. As importantly, our participants say they weren't educated about or anticipating these potential difficulties. In my case (a mastectomy in l998 followed by radiation in l998), skin care, scar care, chording and lymphadema all evolved as unexpected consequences. I certainly wasn't at all expecting the degree of arm impairment the removal of 28 lymph nodes would cause. All of this is resolved and is fine now, but at the time it was anything but. It simply seemed that by treating cancer I had invited one problem after another. That's the reality for many women. So thanks so much for venturing into this area. I'll look forward to hearing your talk at the conference and applaud you for this positive step in improving patient outcomes. Jody Schoger

Knot Telling

Date: 11 Mar, 2014

Modified radical mastectomy (left) in 2004. Chronic pain that was treated with gabapentin for about six years, when I just decided to stop it. To this day: Chronic itching "on the inside" that cannot be stopped with scratching, even though I sometimes find I've scratched the area around the scar until it bleeds, usually while I sleep. Intermittent sharp pain at the surgical site. Feels like a stitch in your side, but it's in my chest where the breast was and/or the axilla on that side. I was not given information about reconstruction. I was not informed of what to expect post-operatively.

Lorie

Date: 11 Mar, 2014

Hi Dr. Whitacre, I'll try to keep brief:-) Dx: 2004 Stage II Breast Cancer, IDC Left Breast (with DCIS), Right Breast DCIS. Bi-lateral mastectomies with expander/implant reconstruction. Had three failed implants, left side only. Implants have since migrated, southward. Previous cancer survivor, Hodgkins Lymphoma, numerous basal/squamous surgeries. Previous radiation therapy in 1976, (mantle radiation) caused numerous issues with skin, and secondary cancers. Had top notch Breast Surgeon and Plastic Surgeon. Breast Surgeon explained that it would be best to not take more lymph nodes on sentinel biopsy, due to increase in developing lymphadema on prior irradiated skin. Never developed any complications from mastectomy surgery, other than the post-operative pain. Hope this helps. Lorie www.breastcancersucks.com

Nancy Castleman

Date: 11 Mar, 2014

Mammo @ 41 in 1991 --> Lumpectomy & 13 nodes removed --> Stage 2 B, large primary w aneuploid node. Surgeon said the lymph nodes felt cancerous (grainy?), but the pathoogistS we had look said the nodes were negative. Clear margins! (Followed by chemo, radiation, chemo, Tamoxifen 5 yrs) I had a great surgical result, thanks to the woman surgeon I chose (in Poughkeepsie, NY!), who I felt would slice and dice until she got every speck of BC. I'm still NED and have full use of my arm. In so many respects, I know I'm one of the lucky ones. Still, I do wish the "staples" doc used didn't bother me so much. They often ache and are sometimes painful. When one of my granddaughters once elbowed me there, I thought I'd pass out. Not sure her folks were happy with me explaining why it hurt so much. Hope this helps. Very much appreciate your interest. Nancy Castleman

Dee Bell

Date: 11 Mar, 2014

Dear Dr. Whitacre, I had a modified radical mastectomy of the right breast followed by Tram Flap Reconstruction March 23, 2012. I had a hard time with an area under the breast healing, but I have mild to severe pain since surgery. I had a heaviness in the reconstructed side to which I would go to the emergency room telling them "I think I have lymphedema in the trunk. They would give me pain meds and send me home. It was not a sharp pain just a heaviness. After two months I developed swelling in wrist and diagnosed with lymphedema in arm and right breast reconstruction. Fall of 2013 a saroma was discovered in right breast reconstruction and was drained. The fluid contained cancer cells. A CT scan in January 2014 revealed two new tumors behind the reconstruction on the chest wall. If I knew then what I know now I would never have had the reconstruction as the weight and heaviness leaves me in pain 24/7. I have undergo radiation a second time for the tumors so the reconstruction is hard and leathery and there is never a time I am not in pain. I hope this helps you. I was diagnosed stage II at my biopsy, stage III after the mastectomy and stage IV March 7, 2013 via a lung biopsy. The cancer has spread to my lungs in addition to the chest wall. It spread to lungs first.

Peggy Anderson

Date: 11 Mar, 2014

I had 21 lymph nodes removed as the cancer in one was not in the sentinel node and was farther down. That one node was metastasized around it. I had three breast surgeries that were to be lumpectomies. The problem was getting clear margins. It was more like a partial mastectomy. I had two more surgeries below the breast. Type of breast cancer: invasive and DCIS. The DCIS was in the aggressive stage. I did radiation, extra radiation, and no chemo. I could of had both breasts removed. There is a family history of breast cancer. I am a 10 year survivor. One breast is big and one is small. I go to the Mayo Clinic for my mammograms and it is very painful. What would I do over? I should of had both breasts removed. If I knew what it would look like and how painful mammograms would be I would have chosen a different course. I do have some lymphedema in the arm, especially the back and breast from a recent ultrasound. Bone pain from radiation has cropped up. Tight muscles in the arm and range of motion is poor in that arm, also on my heart side. That's my details. I run a non-profit breast cancer organization as a full time volunteer.

Kristi

Date: 11 Mar, 2014

Like Knot Telling, I have this itching inside that can turn quickly into sharp stabbing pain that I cannot handle at all. I thought it was considered nerve damage. Controlled by gabapentin on a daily basis. I went from doctor to doctor and no one seemed to know what it was or what to do until I was sent to a pain doctor who gave me the gabapentin.

Ann Fonfa

Date: 11 Mar, 2014

http://annieappleseedproject.org/images/HANDOUTNatural_Strategies_to_Reduce_Toxicities.pdf Above is the Handout Annie Appleseed Project, the all-volunteer nonprofit I founded, created to help folks deal with some of the ongoing toxicities. I have been active with the Cochrane Collaboration's Adverse Effects Methods Group. We find that all too often adverse effects are not recorded, or not recorded fully or properly. This is true in the US as well. There is no standardization on how to report them. On a personal level I experienced all the strange sensations after mastectomy, but I tried a technique seen on PBS many years ago - I rub the air just ahead of where the feelings are and somehow it works.

Linda Wallace

Date: 11 Mar, 2014

Hello Dr. Whitacre: DX 4/2012: IDC (left), Stage IIA (2.5 cm), Node negative (0/6 nodes), Grade 3, Morphology-TNBC (weak progesterone): HER- ER- PR+, BRCA negative. PET/CT clear. Bone scan clear. My surgeon was supportive in a difficult time, but she did not discuss all options. She actually said, "we don't take your breasts anymore" which is not true and never discussed mastectomy, even though I had an aggressive tumor and did not want chemo or radiation. I had lumpectomy with sentinel node biopsy and relented on chemo/radiation after much pressure but stopped after one infusion (A/C) - same with radiation after 4 days. I quickly went downhill, and the treatment was going to kill me quicker than the disease. The quality of my life has been greatly altered - after limited chemo/radiation, I have indigestion, burning mouth, relentless fatigue, and depression. The fact of the matter is cancer treatment is horrendous and doctors minimize side effects to ensure you will continue and validate their recommendations. It's all very paternalistic, and declining treatment is not presented as a reasonable option, even though after diagnosis your life will never be the same regardless of what you do. I'm glad I had the lumpectomy to remove the tumor but wish I had stopped there, including the sentinel node biopsy to keep my breast's last line of defense intact. Also, both shoulders eventually went frozen (sentinel node biopsy on left, and port on right) requiring extensive physical therapy. I still have pain and limited mobility in both shoulders which impact daily activities as well as body position in bed and sleep quality. My breast incision itches occasionally but is minimal discomfort as compared to everything else, and I can no longer sleep on my stomach. Also, wearing a bra is uncomfortable after a few hours, and sensations are constant reminder of what took place. Declining treatment is not to be taken lightly but it was the right choice for me, and I wish I had received support.

noreen

Date: 11 Mar, 2014

17 years later and Doctors still don't address lymphedema this is important to so many of us who suffer from pain and serious infections . Patients need to be the given the right information to guard against this problem. Doctors don't know what is wrong when you get a serious infection. Also come up with a plan for long term survivors to protect their health going forward.

Nicole Renée

Date: 11 Mar, 2014

Dr. Whitacre ~ Your quest to improve health care through earnest communication with the patients is greatly appreciated ... thank you! A brief cancer bio on me: dx on 12/26/12, Stage III b IDC (6.5 cm), Grade 3, E+P+Her2-. Had 20 wks of neoadjuvant chemotherapy followed by bilateral mastectomy (left modified radical, right simple) with tissue expanders in place for future recon, followed by 30 radiation, currently only Tamoxifen, 6/14 I will have DIEP flap reconstruction. At least 3 of 13 lymph nodes involved (hard to know completely w/neoadjuvant chemo shrinkage) Though I had an AMAZING surgical onc in Boston and equally amazing, renowned plastic surgeon ... I have always felt that communication concerning long-term complications from surgery are not always addressed or evaluated early on. I have struggled with severe cording down my arm and chest wall as well as struggled with chronic pain from lymphedema in my chest wall. With the fears you're confronted with ... especially post-treatment, I think these are issues that need more focus and direction from the clinicians. Another area of concern: friends in my local young women's breast cancer community have continuously voiced frustration over the lack of communication regarding choice during surgery (for example, many didn't realize you could have tissue expanders placed with the planned procedure being Flap surgery a year after radiation instead of implants). I believe if the proper collaboration and communication between surgical oncology and plastics would be a key ingredient in helping women make informed decisions. I hope these thoughts help ... and again hats off to reaching out to the voices that matter -- we the patients. :) Nicole

Lisa

Date: 11 Mar, 2014

Dr. Whiteacre, Thank you for asking for patient input and for doing what you do. DX: 2009 Stage IIC, ER+PR+HER2+ had neoadjuvant chemo (TCH) April 09 - July 09, followed by bi-lateral mastectomy & removal of 18 lymph nodes, 6 1/2 wks radiation, continued on Herceptin until May 2010. Reconstruction began in August of 09 (expanders were placed after mastectomy) expander on radiated side broke through, lost skin due to necrosis, three surgeries later am done with reconstruction (had lat flap on both sides). I have experienced a loss of range of motion in both arms, but especially right side. Have pain and itching at scar sites (both scars on back and front bother me daily). Same description as Knott with respect to the itching from the inside. Lymphedema in both arms, but predominantly in right arm (side lymph nodes were removed). Most troublesome is the loss of use and the pain in my arms with use and simply for no reason other than what has happened. There is no real fix for the pain. Pain meds have no affect. My daily activities, including work, play, etc. are affected. Cooking, something I used to love to do, is now a challenge. Simple things are hard to do . . . i.e., I can't open bottles or jars - absolutely no strength for it. Frustrated and in pain daily. The only thing my surgeon discussed with me about anything chronic or long term was that I would likely lose feeling in the back of my arm due to lymph nodes removed on that side. I did lose feeling there - and that doesn't really bother me at all - it is everything else that bothers me. Glad to be here, glad to be N.E.D. I just would have liked a little more information. And, I really take offense to the mastectomy with expander placement being referred to as "immediate" reconstruction . . . do you think we could be a little more honest with that? I just had my last recon surgery (of four in total - had post op infections, lost tissue, etc., etc., etc.). Time from mastectomy and the beginning of "immediate" reconstruction was nearly years. I am finally done with reconstruction. I realize my situation (expander breaking through skin and skin necrosis that resulted) may not be the norm. But, even if my reconstruction had been completed on their proposed time line (without the complications) there would have been nothing "immediate" about it. I guess I find that part pretty annoying - just tell us the truth. We can handle it. Thank you for asking for this information! Lisa

AnneMarie Ciccarella

Date: 11 Mar, 2014

First and foremost, thank YOU, Dr. Whitcare for this statement: "reminding the audience that the patient experience is paramount is one of my goals." I wish I had known that despite my lack of sensation, my reconstructed breasts (at times) itch and it can be maddening. I am 7 1/2 years post mastectomy and this still happens several times a week for short periods of time. I haven't been able to identify if there are specific things (weather, clothing etc) that may trigger the itching. It seems to be random. I'm sure that seems rather silly in the scheme of things but when I experience the itching at an inopportune time, it's a bit of a problem. Beyond that, I'd like to express my deepest gratitude that you are bringing our voices to the discussion. As someone who is very much involved in my own care and the care of my now metastatic mom, knowing you are inviting our first hand accounts to be included in your presentation means so much. With many thanks, AnneMarie Ciccarella

Eric Whitacre

Date: 11 Mar, 2014

Thanks to all who have shared their experiences, both on the blog and via email. To be able to learn from these very detailed reports of intimate details is indeed a privilege, and I admit that my first experience querying the patient community has just left my head spinning! There is so much we have to learn about the impact of what we do as surgeons, and so many things we can learn to do better. Eric W.

Lisa

Date: 11 Mar, 2014

Thank you Dr. Whiteacre, you bring me a lot of hope to know that you care so much and want so much to improve things for patients. This is very encouraging to me. I am grateful to you and I know that through what you are doing others will benefit greatly. This is wonderful! Thank you. Lisa

Therese Quinn

Date: 11 Mar, 2014

Thank you for asking for our input. As you have indicated we are a person not just a patient and a number. Thank you! I had Stage II IDC , BRCA 2 positive breast cancer which I underwent an initial mastectomy and placement of an implant. After chemotherapy, I followed up with a second mastectomy and DIEP flap reconstruction. I was blessed with a wonderful, caring surgical oncologist and his team, as well as an amazing plastic surgeon. They took time and provide me with so much information. They made sure I had time to discuss my questions, concerns, options. They were upfront and honest with me. I feel I was definitely well informed and able to make a decision which was right for me. I do know that after surgery I have continued to have a scar which six years later is still raise and pink. My oncologist was very concerned about this. I wish he had an understanding that as a red head, fair skinned that this was a normal pattern of healing. There were many times I was told this was a problem and definitely increased my anxiety because I thought there was something wrong or a recurrence. I had 22 lymph nodes removed. I have been fortunate not to have any problems and was instructed how to follow up and care I could do to help my arm strength and prevention. My plastic surgeon ordered therapy for me to help me with scar mobilization and arm mobility. As I talk with other BC survivors they are always surprised by this. I feel this is an area that could help so many of us. I was told my program was a small majority to provide this level of care. I hope it would become a standard. This is a lifelong issue and the more I can do to help myself the better. Thank you!

Elaine Finlay

Date: 11 Mar, 2014

Great topic. I echo the gratitude expressed above. Two mastectomies, lymph node removal and DIEP reconstruction have left me with extensive scarring. It does not show from outside, but underneath the reconstructions, my massage therapist describes my chest as a web of scar tissue that looks like a broken windshield. It has to be manipulated regularly to keep it from tightening up and pulling. It has affected my hips, my shoulder and even my knees. As those are affected, they in turn cause misalignments outward. We, as patients, do not feel that surgeons are aware of the long term implications of repeated surguries. Perhaps that area needs to be the subject of long term research. Elaine

Nancy's Point

Date: 11 Mar, 2014

Hello Dr. Whitacre, Thank you for asking for patient input on this. It means a lot to know physicians are truly interested in hearing patient perspectives on this. How much time do you have? ha. Seriously though, there are long-term side effects for lots of women following their breast cancer surgeries. Physical side effects are very individual, but for me, I have general daily discomfort. My implants still feel unnatural and quite heavy and by day's end, I quite literally feel "weighed down." No one discussed this with me, just the mere weight of them. I would have liked to have been given the opportunity to further and better explore the other options available to me for reconstruction. I now realize I was inadvertently "pushed" into going the implant route. And not doing reconstruction was never really presented as an option at all. I wanted it, but opting out should always be a clear choice. I dealt with limited range of motion for quite some time following my surgery. I was not offered PT, but did seek it out finally myself. I was worried I had lymphedema - another topic not discussed with me at all and I did have 14 lymph nodes removed on my left side. (I had a bilateral) There should also be more discussion about self-image following breast cancer surgery. Intimacy issues sometimes arise. I realize removing the cancer is of the utmost urgency, but there is more to deal with. IMO mental health in general needs to be better addressed and should be part of cancer treatment protocol. I also have that itching from time to time like others have mentioned. Very strange sensation. And the lack of feeling in the chest area following surgery can be hard. Learning to adapt to an altered body isn't easy. Sometimes the way things are presented definitely makes it all seem a whole lot easier than it really is. Thanks again!

Amy

Date: 11 Mar, 2014

Eric: This book is EXCELLENT and VERY INFORMATIVE providing patient input from the high risk or BRCA positive patient. Please utilize! LETTERS TO DOCTORS by Jonathan Herman MD and Teri Smieja. http://www.amazon.com/gp/product/1939776295/ref=col_PCxi7wGJgJD50aRFZsqLMoUVg More info on book: http://thebrcaresponder.blogspot.com/2014/01/letters-to-doctors.html

Elizabeth J

Date: 11 Mar, 2014

Thank you so much for asking about the long-term effects. So many times that is downplayed, and even if the answer is "we can't do anything," they need to be taken seriously so they can someday be prevented in future patients. I had inflammatory breast cancer, ER+PR+, diagnosed Jan. 2012. I had 12 rounds of taxol and 4 of AC. I still deal with neuropathy in my feet, fatigue, and tingling in my hands (thankful I can use them but extremely annoying - I'm a pianist). I has a modified radical mastectomy (right side) with all lymph nodes removed. Range of motion problems, sporadic itching certain spots where the breast had been (I do not mean the scar, I mean literally where the breast had been - I would find myself scratching specific places in the form or in the air when not wearing it) and occasional sharp sudden pains in the nipple that isn't there. Also numbness in upper arm. (But able to itch and feel pain down inside it.) Several months later I gradually started getting backaches whenever I tried to do anything - housework, piano playing, exercise - without a weighted form to balance. Sept/Oct 2012, I had radiation. I have had sporadic (several times a day) cramps across the radiated area ever since. And the radiation tattoos still ITCH!!!!!! (At the time they swelled up the size of pingpong balls - they said they had never seen that before and told me to use absolutely useless cortisone cream and finally take oral antihistamine.) I have also found I have upper right chest discomfort and shortness of breath when I sing. Several weeks after radiation, I suddenly had extreme pain and swelling in right should/arm/hand. It was lymphedema. I went for several weeks therapy and have to wear a compression sleeve. At the time, the therapist said I also had trunkal lymphedema which went down with the therapy. Feb 2013. I was diagnosed with metastasis to the spine. Radiation again. More fatigue. Acid reflux ever since. I was finally allowed to get reconstruction, January 2013. It had to be DIEP flap reconstruction due to all the radiation damage. Still in recovery, but the surgeon did something that helped my range of motion. The chemo port came out at the same time - and I realized the aching on that side never actually went away, I had just gotten used to it. Current treatments are femara and faslodex. I deal with hot flashes (could not tolerate gabepentin - vitamin e helps a lot), fatigue, nervousness, bone/joint aches (including visible swelling of joints), dry mouth (dentist has me using special toothpaste), dry eyes (eye doctor has me using 2 kinds of eye drops), dry skin, and insomnia. I am on prescriptions for joints, sleeping, and e-string because bladder and vagina problems became so severe. (Actually tried Arimedex first - it was totally unbearable.) Oh, and I can no longer work as a public school music teacher. I have not even gotten into the self image and intimacy issues. When the bandages come off after the mastectomy is a shock no one can prepare you for. Even after I got a breast form, I was extremely self-conscious about clothes. Some tended to gather under the right arm. Many necklines did not look right. Sleeveless dresses (and I live in a very hot climate) are still going to be an issue even after reconstruction, I feel I need to keep my arm down in public so no one notices (or asks) about the deep hole removing the lymph-nodes left. (In an exam, one female med student went "wow, did they ever take your lymph-nodes!" (The doctor cringed, I suspect she got a talk on how to talk to patients.) Worst of all, my husband moved out of the bedroom at the time of the mastectomy. There is no intimacy or almost no affection. Oh, he doesn't plan a divorce, he believes in "til death do we part." He just won't sleep with me and is uncomfortable with any affection, even just hugs or kisses. I think marriage counseling after a mastectomy ought to be REQUIRED at set intervals for a year or so. I am "ungrateful" to ask for anything more than PLATONIC loyalty and duty! (And he is very good at the loyalty and duty part, but I feel emotionally divorced.) I have found out from some other women this is a much more common problem than most realize. They probably are the men that if they were not religious would divorce. Don't get me wrong, I am thankful to be alive, but knowing what I know now, I am not too sure I would be able to face doing it again. And as for this think of it as a chronic disease like diabetes nonsense, I have a lot of friends with diabetes and they don't do through anything like this. On the plus side, my seasonal allergies have been less severe. No idea why! And no, it does not come close to balancing all this out. I do not spend my time complaining about all this, b

Elizabeth Vivenzio

Date: 11 Mar, 2014

I am thrilled when breast reconstruction works out for others, but that is not always the case. After two failed implant reconstructions following my 2009 mastectomy, I finally had breast deconstruction in April 2013. I am finally free from the pain and living life flat and fabulous! My pain was unremitting due to the constriction of my pectoral muscles…and all the muscles surrounding them. When implants are placed under the muscles, the entire biomechanics of the upper torso is affected. I could not sleep through the night without the pain waking me numerous times. The inflammation of all those stretched muscles led to nerve pain as well, and my medical team surmised that I had a neuroma. In addition, the large implants pressed into my lungs during deep breathing since my pectorals were contracted. It was uncomfortable and exhausting! When I was in pain, I knew that living on painkillers was not an option for me. Now, mind you, my surgeon at Memorial Sloan Kettering was clear on full-disclosure prior to my surgery. She said that there were no guarantees that the deconstruction would relieve my pain. That is because, according to clinical studies, she said that 50 percent of women experience post-mastectomy pain! I followed my instincts that there had to be relief once the muscles were not contorted. I was willing to take the chance, rolled the dice, and I am a winner! The pain is gone, and I felt the relief immediately upon waking from my surgery. My severe stabbing pains are gone and I can breathe deeply without the lung constriction that I was experiencing. I began physical therapy, and it is so liberating to stretch those chest muscles without the implants restricting movement...and breathing! Both patients and physicians need awareness and education that,“Bigger is NOT Better.” Breast Healing’s SIZE MATTERS Awareness Campaign encourages the discussion of implant size decisions during breast reconstruction. The contention of the SIZE MATTERS message is that the larger the implant, the greater the risk of post-mastectomy pain, discomfort and other complications from the distorted biomechanics of the pectoral and surrounding muscles. Thank you for beginning this awareness among your colleagues. Elizabeth Vivenzio President, BreastHealing.com

Carey

Date: 11 Mar, 2014

There is not enough information made readily available about how to manage for (prevent) lymphedema, especially in active patients in their 30s and 40s. I too have had scar tissue cause muscle issues that I was also not prepared for. In my case, incredible pain in the pectoral muscle that required many PT sessions to resolve. I was told, after the flare up, that this could keep happening. (Stage 2b BC dx in 08, mastectomy and DIEP. Recurrence at same site in 12 followed by lumpectomy and radiation.)

Ann Fonfa

Date: 11 Mar, 2014

I want to mention that I used cocoa butter to reduce scar tissue. I had a port removed and found I had trouble moving my arm after a while due to scarring. By rubbing cocoa butter in the scar area, I reduced that tight tissue in THREE MONTHS of daily use. When I posted that onto our website for Annie Appleseed Project, many other folks wrote to tell the same tale. Great stuff, non toxic. I bought the organic kind.

Kathleen Jones

Date: 11 Mar, 2014

58 yo w/ triple neg. dx Sept 2009. 2cm mass in left breast and 2cm + node. Clip placed in breast tumor, 12 weekly doses of Adry and daily oral Cytox, then 12 weekly doses Taxol. Left mastectomy and lumpectomy = PCR (pathologic complete response). Then 5wks daily radiation. No reconstruction. Very active individual before and after treatments. Hiking with 45lb pack around Mt Rainier this summer. Avid gardener. Bike with friends. Work full time as Midwife at busy hospital with long hours. Best rehab: 3x per week Pilates at great studio. No lymphadema. Lots of cording to begin with. needed lots of deep tissue massage. My message to others: keep stretching, keep moving. Lots of Vitamin D. Healthy diet. Good social support systems.

Lisa Grey

Date: 11 Mar, 2014

Please mention that chemo brain is no joke. It is PCCI, a real neurological issue that affects career and daily living after chemo. Thanks for asking for input!

Susan Zager

Date: 11 Mar, 2014

Thank you so much for asking about long-term complications from breast surgery from the patient perspective. I wish my surgeon had really explained the problems that would happen as a result of doing reconstruction on a radiated breast. I originally had a lumpectomy with chemo and radiation, but then got a recurrence in the same breast and due to other factors I chose to have a bilateral mastectomy with reconstruction. I asked my breast surgeon if whether I chose to do a flap or not made a difference and his response was "It makes no difference to me." No w I know he knew it would make a huge difference to me. His suggestions for plastic surgeons were not affordable to me (example: I got an $80,000 estimate over the insurance amount for a double lat flap). As a result I picked a surgeon who did not due flaps because that's all I could afford. She just could do tissue expanders and implants and I paid the breast surgeon $10,000 over the insurance to remove my breast tissue. The radiated breast did not fare well. I then did a lat flap with tissue expanders and again implants and it looked great at the beginning but then looked like a baseball stuck to my chest. I then found a wonderful plastic surgeon who has been making changes with a few surgeries and lipofilling (I don't have much fat) but the skin puckers so she is working with trying to fill with my lat muscle and the lipofilling. I also have cording that hurts (it's like shooting pains) and I always feel like I am wearing a heavy bra with implants that I wish I could take off. I had a natural c cup and I wanted my clothes to still fit. I just had another surgery for the cording problem and using the last of any lipofilling that could be used. I wish I had known from the beginning to do a DIEP flap but couldn't find someone who worked with my doctor to do it on my budget. In the end I've spent so much in copays from having so many surgeries. I will have to wait and see if this surgery helps the skin puckering problem as well as the shooting pains from the cording. Of course they are also numb accept the pains. My back is numb where the lat flap was. I am fine with ROM and can lift 20lbs on each side. Although not from the reconstruction, chemobrain is real. Thank you so much for listening.

Brenda Denzler

Date: 11 Mar, 2014

I had a MRM with full ALND on 12-3-2009. I fought like crazy to not let them take all three levels of nodes, but I lost that fight. Here are a few thoughts about the long-term sequellae that I now live with, due to the surgery: *If only I had known that lymphedema is not just a swelling of the arm, but that IT HURTS! Lymphedema aches and hurts. And there is no amount of lymphatic drainage or sleeve-wearing or wrapping that changes that. It may (or may not) make the pain diminish, but it does NOT get rid of it. So for those physicians who want to dismiss the risk of lymphedema with a wave of the hand and a blithe "It's easily managed" (as my medical oncologist did repeatedly), I would like to say fine. YOU get it, first, and tell me how you do with managing it. And if it works out well for you, then I'll take that risk, too. * Lymphedema is a pain in the tookus to manage, BTW. After cancer treatment, it seems that our bodies become very high-maintenance. Trying to manage the swelling and pain of lymphedema is one way in which our lives become more complicated due to these post-cancer health management issues. Not fun. Or desirable. *I have post-mastectomy pain syndrome in my chest wall, along my clavicle, and into my axilla, but fortunately it's not usually horribly bad. It can flare and hurt a lot, but it's not like that all the time. I don't think this outcome is all that rare. But you surgeons may not hear much about it, because by the time it manifests itself, we are usually gone from your orbit. *The post-mastectomy pain syndrome seems to be "echoed" in my contralateral breast and axilla. I don't know why. We've done mammogram, PET/CT and US of that area and not found anything suggesting recurrence. The only explanation is referred pain from the mastectomy side. So I have double the pain to manage. *Periodic itching that can't be relieved by scratching. Yes. Part of the post-mastectomy pain syndrome. *Scarring from the surgery is complicating my ability to get manual lymph drainage to work very well. I have pockets of lymphatic fluid that I have trouble getting to clear, because the scar tissue along the clearance route is so thick that we have trouble finding a way around it. I won't even mention the perpetually sore ribs on the surgical side, because I think that is caused by the radiation, not the surgery. My ribs feel bruised and sore much of the time. That contributes to my over-all discomfort. And as other women have said, the unrelenting fatigue is a real bear. It is not relieved by rest or anything else. Some days it is better, and some days it is worse. But it is always there.

Eric Whitacre

Date: 11 Mar, 2014

I cannot thank everyone enough for sharing your personal experience, either on the blog or via email. There is definitely plenty for me to present to my colleagues about post-operative complications (alas, it’s only a 10-12 minute presentation.) I will get back to everyone after the presentation, but my impression at this point is that the real eye-opener will be the input from the patient community and not just academic published articles. Eric

Beverly Bungenstock

Date: 11 Mar, 2014

Thank you so much Brenda... I am sitting here crying...You have addressed so many of my concern's & question's ...This is more like a Novel than a comment... Over a year ago ... I had a lumpectomy & 6 week's of radiation on my left breast ...Surgeon removed 32 Lymph nodes... they were all negative ...He said reason for removing so many was because "they looked fat & juicy" (?) I asked... but was never explained to ...what that was supposed to mean:/ ??? I am currently taking Anestrozole ...supposed to take it for at least six year's ... Not sure if it is the medication or recuperating from radiation ...that is causing me to have very little energy or strength...I am tired & have aches & pain the majority of the time ...I literally sleep more than I am awake ... I used to take pride in my home & myself...Now I am so overwhelmed by everything...Fighting depression is awful... My quality of life isn't good ... I have been scared half to death worrying about pain underneath the affected breast ...It feel's like a rib sticking me underneath my breast... it catches me off guard & is so painful at times ... I almost lose my breath ... I also have a lot of tenderness & swelling in that breast... Dr. said it's to be expected & may never go away... I had a Mammogram a few day's ago... I told the Tech about the pain under neath my breast ...she had one of the Dr.'s there ...come in & talk to me...She said if the pain wasn't constant... it probably wasn't reoccurring cancer & that I should see my Oncologist or regular M.D. ...He may want to do further test's ... I am going this Friday for my yearly physical & to get the result's of the blood work I had done...Praying for a solution or at least an explanation that I can understand & accept as normal for me ... for what I am trying hard to deal with... I may sound like a Hypochondriac with all of my complaint's ... Sometimes I feel that way... Thank's again for your post Brenda ... It help's to be able to "vent" & to hear what other's like yourself are also dealing with... Good Luck & Prayer's for you & for all of us to make it more comfortably through this sometimes crazy Journey called "Life" I am especially grateful & feel blessed ... that I didn't have to go through this ...when I was raising my children...Would have been much harder then...God bless those of you who are... Thank you again Brenda & to all of you ...for sharing your journey's... Beverly ... P.S. I'm so sorry ...I know I'm going all over the place with my comment's ...writing them as they are coming to mind... Do you know anything about Cancer Marker's ? I was recently told by a nurse practitioner that the last blood test I had done... showed one of my cancer marker's was elevated...( I didn't even know what that was ) she said it "might be normal for me"...!? Normal ? I want to know how they find out ...if it's normal for me or not... I had P.T. for Lymphodema in my L. arm ...Wore a sleeve for a while...Seem's to be under control for now...I also have itching under neath on my arm ... side where I had the surgery done... I have itched it so much ...even during my sleep... there are bump's that bleed & won't heal ... the itching isn't constant... but bothersome... Dr. gave me an ointment ...not any real help... Guess I just deal with it... the lesser of my other complaint's ... Okay...guess that just about end's this "Novel" I've written...Just took a BIG sigh of relief...after being able to "vent" my concern's... Thank's again Brenda from my heart... for listening ...Bev...

Beverly Bungenstock

Date: 11 Mar, 2014

Thank you Eric... for being there for all of us... I am sure that I am not alone in appreciating your effort's ... Bev...

Sally

Date: 11 Mar, 2014

I think I am behind the eight ball on this one since I am just now seeing the post- but in case it is still needed..... I would have loved to have better understood that while mastectomy itself is likely a one time process, reconstruction most certainly is not. I had a mastectomy in August 2012, and almost a month later, my first reconstruction with implant. I thought that would be it. Months later, cellulitis resulting in emergent implant replacement. Now almost 2 years later the need for liomodeling which will not be a one time a occurance. Additionally, discussions about the emotional impact of mastectomy (sexual awareness, etc). And lastly, I think there is never enough information for the spouses of mastectomy. My husband would agree he would have benefited with "let me prepare you" information. Of note, mine was a prophylactic mastectomy following high dose radiation fro hodgkin's lymphoma (20 years earlier). I hope this is helpful. I've discussed some of these in social media as well- the impact and how to help navigate. But there can't be too much information provided well before the decision for mastectomy takes place. In case others need more insight from my perspective. www. tradinginthetatas.blogspot.com Keep up the strong work, and thank you for tackling this lecture with patient input! Sally

Barbara Davis

Date: 11 Mar, 2014

I had stage 0 Dcis cancer. I was in a. Clinical trial at U of Pennsylvania. It was a vaccine made with my white blood cells. I had a mastectomy of right breast and Diep reconstruction. I have a big stomach as a result of the surgery and problems breathing. I gasp for air if I try to walk while carrying anything too heavy, especially if it is hot outside. All the plastic surgeons told me was I would have a "flat tummy" after surgery and wouldn't that be great. That was a preliminary short meeting with a plastic surgeon. The meeting with the actual plastic surgeon was cancelled due to emergency he had to perform. Women are not informed of what the bad results of this surgery can be. I am thankful for the trial and that I am alive but please don't tell us there won't be any complications after the surgery. My stomach looks like a beer drinkers. Tell women the truth

ParioLee Law

Date: 11 Mar, 2014

My lumpectomy was over 7.5 yrs ago.---saw all of my staples in a mammogram & realized why I had severe pain---almost ripping sensation when I moved a certain way. I also suffered from radiation exposure as 11% of my left lung was impacted & I have asthma now. Is there ANYTHING I can do to help with the staple pain?? Tired of this esp. as I work out, etc.

Lesley Bishop

Date: 11 Mar, 2014

I know this is too old for thepresentation, but if others are reading it before surgery or soon after, perhaps it could help. I was diagnosed at age 37 with stage 2, triple negative cancer. I had a bilateral mastectomy with implants, after initially having a lumpectomy (two more lumps showed up - both benign, but terrifying) I was told my implants would be much more comfortable than the expanders, but found they were still pretty hard and stiff, and not at all like real breasts (in my case). They were always cold to the touch, though there was little to no sensation in the skin itself. After 6 months I developed my first capsular contracture. Tried massage, stretching it, fat grafting. Finally had surgery, and then had to have the other implant replaced because the capsule was very calcified. Less than a year later, the same thing happened. After having the implants replaced three additional times after that surgery, I decided to have the DIEP- seven years after diagnosis. I left the last rock hard implant in place for so long because I was sick of surgeries and never being done with this, even once the cancer was gone. A year later, and now I have chronic pectoral muscle pain. An incidental finding on an abdominal CT recently showed some kind of mass or lesion in the pectoral muscle on the side I had the capsular contractures. This isn't too uncommon with radiation, I was told, but I didn't have radiation. I'm now waiting for an MRI to see what's going on. I suspect that it's related more to the repeat surgeries and capsular contractures, since mets is pretty much unheard of this far out from triple negative cancer. But waiting is stressful, and it seems cancer is always lurking around every corner, even this far out. I wish I had been told after the second contracture that this would likely keep recurring. And I wish I had gone to a hospital where the surgeon who did reconstruction did the DIEP to begin with. I wasn't pushed into implants, but because I had a great breast surgeon and oncologist at my hospital, I didn't want to go somewhere else for a procedure I knew little about. And I really liked and felt comfortable with my plastic surgeon. In retrospect, though, because the procedure wasn't offered at my hospital, I don't think I was really given a full presentation of my options. From a hospital or doctor's perspective, I understand why, but as a woman who has undergone countless surgeries now, I think I -WE - deserved more. Also, my primary care doctor referred me to a general surgeon when I was first diagnosed. I am so glad I had my mom with me at my appointment, because she said, "Absolutely not. She needs a breast surgeon." My primary care doctor said that this was how they do it, and my mother pointed out that my insurance did not require her authorization. I am sure that doctors would never have gone to a general surgeon for her own cancer diagnosis, so she shouldn't have pushed the issue at all, especially since my insurance was paying for it, not her! Anyway, I'm glad you did that presentation and asked for patient input. And I hope newly diagnosed women come across this post. It may scare or upset them, but knowledge really is power!

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