A Medical Tale of Wrongdoing and a Surgical Caveat Emptor

Do you think it’s odd that hundreds of thousands, or quite possibly millions, of breast cancer patients have been deceived and maimed by their surgeons for years with no accountability? And this is still being done every single day before, during and after mastectomies.

I posed a question on two private Facebook groups for post mastectomy pain (PMP). The heartbreaking answers I received made it abundantly clear we all share the same tragic story.  This is just a small sample of the responses received. All of these women gave permission for me to use their comments and their names. The only editing to answers was to spelling on a few words here and there.  I encourage others to add their stories in the comments below.

 

Question –  “Did anyone ever get warning from your surgeon(s) that you would have the possibility of permanent pain/nerve damage?” 

Answers

“Not one doctor in Chicago told me I was at risk for nerve damage. Keep informing, Donna! Great job” – Jackie Ladislas  

———————————————————-

“Nothing about PMPS – UW madison & northshore, highland pk, il – only glowing stories of “perky new breasts” – “one year out of your life to buy you 10” – Not sure the information could have stopped my decision – because of the size & type of my cancer – but maybe i would have taken measures sooner to improve my outcome! Thanks for speaking out!”

It’s sad that our fight must continue – but these doctors need to find ways to fix the problem – not meds, not creams, therapies, acupuncture, massage on & on…fix the nerves & change your initial surgery procedures to illuminate PMP!” –Sue Bombard King

———————————————————————

“Not once was it mentioned about any type of discomfort or nerve pain! I never imagined that I could possibly have this much discomfort 8 years later!!”

Can’t thank you enough for representing us and being our voices that long to be heard!!” – Mary Lou Williams Pavone

———————————————————————————

“No one warned me about nerve damage or being left with an iron bra feeling. My surgeon also seemed surprised when I complained of pain long after the surgery.” – Molly Boyd
————————————————————————————

“Not only did I not get a warning that this could happen, I was treated like I didn’t know what I was talking about when I went to my surgeon for help. The Dr and his nurses pretended to not have any clue what kind of pain I might be talking about. I didn’t get any validation of my pain for months, and it’s still a daily frustration.” – Brenda Sveen Anderegg

———————————————————————————–

“Nothing. Took years for any doctor to even admit there was such a thing. After I self diagnosed.” –  Karen Frangoulis

———————————————————————————–

“I can say I was never warned about the possibility of chronic 24/7 pain from the lymph node removal or bilateral mastectomy. If she had explained it , as a healthcare professional , I would have understood that it was a significant possibility. I can say I researched over and over the chemo, rads etc, but I went in thinking the surgery was only skin deep and didn’t adequately do my own research because sadly I thought it was a basic routine surgery with limited risks but great benefits as far as removing the cancerous tumor ?” – Michelle Lyn Harman Collier 

———————————————————————————–

“I was given no warning. My GP immediately diagnosed it though. Couldn’t take gabapentin, no other treatment offered.” – Rosemary McLeish 

——————————————————————————-

Thank you for doing this. I was not warned about chronic pain from my surgeon or plastic surgeon. When I contacted them because I was in unbearable pain and could not allow anything, even fabric, to touch my breast area, they seemed to have no clue why. I did research on my own and sent them articles from The NY Times. I ended up contacting the doctor referenced in the articles and have traveled out of state twice to see her for treatment. After reconstruction I am able to wear clothing again but am still in constant pain and discomfort. This pain impacts every part of my life.” – Jessica Robbins 

——————————————————————————–

“I was not told about the possible outcome of the surgery! The doctor even said : you will be exactly like me, but without nipples! When after one year of surgery, the pain started badly, I returned to the surgeon and he said that he never heard about this pain and that I am too sensitive. In the report to family doctor he even wrote: ” she put on her head that due to surgery she has pain”. One full year he sent me from doctor to doctor ( ct scan MRI and all the tests for recurrences and possible bone cancer) When nothing came out finally he referred me to an anesthetist doctor.” –Sonia Timariu

———————————————————————————–

“Thank you for doing this. I wish I had time to talk to you about all the @$!# I’ve been through because of this pain. Pain that just drives you mad – literally. I’ve been in the mental hospital twice. They treated my with so many different kinds of drugs that I went psychotic. I endured over 50 different treatments, and you know what works best? Simple, local, lidocaine cream. And local acupuncture. And local trigger injections. Nothing wrong with my brain, just the stupid damaged nerve. I also have severe difficulty with clothing. Someone needs to design clothing for women like us.”  – Dianne McGowan 

————————————————————————–

“I wasn’t warned about any nerve damage/pain, every time I complained I was told it was inflammation and to take ibuprofen, which didn’t help. Almost a year after my surgery I saw a different oncologist and she finally told me I possibly had nerve damage…I then looked for some support on FaceBook and found this groups. Thank God!!! I’d do the surgery all over again but it would have been nice to know what to expect, my doctors are super nice so I’m not sure if they are ignorant to PMPS or scared to admit they caused damage.” – Rhonda O’Dell

—————————————————————————–

It was never mentioned. When I was in pain 3 months after surgery the surgeon literally said “I don’t know why you’re in pain … When I told the surgeon I was crying at my desk from pain when I returned to work and I couldn’t be crying at my desk, he literally said ‘Well, don’t cry.’ When I told him it was too painful to wear a bra he said ‘You don’t need a bra.’ Just….Wow” – Lauren DeCourcey

——————————————————————————-

We’ve been deceived for years. Actually, not just deceived, but humiliated beyond belief too. If you’re looking for a tragedy, this is it.

Here’s the thing – the maiming is probably the cost of doing business. There’s possibly no way to operate in an area where there are nerves without damaging some. I’m not a surgeon so that’s just a hunch. I’ve repeatedly said, this isn’t about scaring people away from getting a surgery that does save lives. It’s true – we’re alive and kicking. This is about making sure that others having mastectomies know this might happen and if it does, what it is. It’s maddening to us that doctors don’t admit to it.  This is also about letting the surgeons know they need to start being honest and forthcoming about the possibilities of nerve damage and lifelong debilitating pain right from the very beginning. Stop misleading us. Own up to it. Put it in writing. Tell us.

Where are the research dollars? Where are the ethics? Where is anyone that can help? To my fellow members of the media – if you’re only telling feel-good, happily ever after breast cancer stories during breast cancer awareness month, please step out of that comfort zone – we are so uncomfortable. We need help.  We cannot fix this problem by ourselves.

28 Replies to “A Medical Tale of Wrongdoing and a Surgical Caveat Emptor”

  1. I’ve had this fire-breathing dragon on my chest since 2004. I’ve tried so many things and spent over $100,000 since trying to be pain-free. I remember waking up in the middle of my lymph node resection , Screaming in pain. I remember being so scared being wheeled into surgery that I was practically falling off the gurney. When I asked my general surgeon, at my 6-week post-surgery visit why I was still in so much pain, he said, “well, whatever pain you have at 6 weeks post op is permanent.” He then walked right out of the room.

  2. 2.5 years out from a double mastectomy. The pain is unbearable at times. I was never told of this possibility, later to read my surgeon, Dr. Thomas Kearny from RWJ Hosiptal NJ, wrote and published an article why he doesn’t recommend double mastectomy as a first line because of this possibility. That made me very upset when my pain was basically dismissed, being told over and over most women don’t experience this. The hunt for help exhaustive and still on going.

  3. I was never warned about chronic pain by my surgeon or plastic surgeon prior to my mastectomy. I have friends that have had mastectomies and they were fine after they healed so I had no forewarning that this could happen.

    I have been suffering from “Iron Bra” since April 2016. I woke up from surgery with this terrible pressure & tightness across my chest and was told that it was being caused by the tissue expanders. For months I was told everything would feel fine after the implants were put in. Well, that never happened and I could tell my plastic surgeon was stumped, he had no clue about the kind of pain & discomfort I was talking about.

    I can’t stand to have any kind of compression on my chest, so that means I can’t wear a bra of any kind only very loose fitting camisoles and tops.

    I’m considering natural tissue reconstruction but am very afraid that more surgery could make this syndrome worse.

    Thanks for working so hard to get this information out to the women who need to know.

    Research needs to be done to come up with alternative methods of performing mastectomies to try and minimize the nerve damage.

  4. I never was told about this possible pain that was out of the normal post op pain. I thought I was going nuts, thinking that all these other women must have it and I must be a whimp. Every check up I left with the notion that by the next one, I should be getting relief…at least that was what I was told. It wasn’t until I researched it and found out that this was a true, real pain. It was confirmed when I insisted on going to another well known doctor. I finally felt validated, but 3 years later , I am still struggling with the awful pain and iron bra that sits upon my chest. It is difficult to find any doctor that can give me hope in getting relief, other than a pain specialist. This has been a huge obstacle in my well being and mine and my husbands life.

    1. Jan – I went through all the same, including the loneliness from not knowing others were out there. My husband and daughter have been supportive, but it hasn’t been easy for any of us and at times very trying on me and my family. I’m sorry it’s been much the same for you.

  5. I’ve had PMPS for 9 years. My surgeon, Dr. Tom Julian at Allegheny General Hospital and Dr. MichAel White plastic surgeon, both lied to my face and humiliated me telling me that “I was their worst patient ever”. That was in 2008. That there was “no such thing as this pain”. Meanwhile the clinical literature about PMPS has been around since the 1970’s. My pain and suffering continue to this day. I’m skeptical that any media effort will change Breast surgery standards. It will take an act of congress as it did in the 80’s to begin stopping nursing home abuse. And that still continues. Surgeons are ego-driven and aren’t required to care about the after effects of their surgical technique, the main cause of PMPS. Maggi Gioffre, Pittsburgh, PA

    1. Maggi – I think it’s definitely going to take a lot of momentum to get this tragedy to stop. But if we (those who suffer) don’t start driving it, then no one will.

  6. Have to commend you for the story. Thank you. My story is pretty much chapter and verse as above. I do have to give a shout out to the team at UTSW Breast Cancer Center in Dallas. They are now providing nerve blocks prior to the mastectomy! Sure wish I’d had my surgery done there but am happy to be under their care now. I’m receiving free therapy as a pain management and cancer patient to help adjust to my new life with chronic PMPS. Thank you UTSW!!

    1. Phylecia – wow, that’s amazing about UTSW Breast Cancer Center in Dallas. Let’s hope the tide is turning this way across the globe. That truly does give me a lot of hope. Thanks for letting us know and keep up the fight!

  7. Yes living in hell. 11 years since my surgery. Suicidal thoughts….yup at times…why … we survived the cancer and the treatments and left to live in constant agony. From my own research finding I am not alone with all these women we are suffering. We go to one dr to another, spend countless of $$on clothing, bras, compression products never mind the $ spent on drugs, creams and various therapy. All the billions spent on cancer research, nothing is brought point blank for us survivors. And yes like the one comment above we need clothes designed for us. Not one dr ever mentioned nerve pain.

    1. Tracy – I tend to write and share so much during breast cancer awareness month, because we (me, you and everyone else with this problem) are seeing the happy, “pink” stories every day. For me personally, yes, I am happy for them -but, and you probably know, they hurt emotionally to look at. And no matter what time of year, the pain is overwhelming – physically and emotionally. Some days worse than others. All of us need support and just from our families and friends – professional mental health help too. I probably should have added that whole dimension to the post above, so thank you for speaking about it. Please keep up the fight.

  8. This just opened the flood gates to my eyes. Ihave thought I was alone. That my pain was somehow my fault.I have been told my problem was from my neck up.for me it is not just about the pain ,or the ability to eat and sleep normal.it’s the feeling of betrayal .

    1. Nancy – I’m so sorry you’re in pain too, but I’m glad you found this and now know you are not alone. It is a completely feeling of betrayal and one we need to fix. I’m trying by getting this story (our story) told. And I will keep at it.

  9. Still another point: I have had a hellish time with scars and pain, nut can’t begin to think imagine what it would have been had I opted to go for reconstruction! They make it sound like a face lift. They don’t tell you about all the revisions, stretching, fat necrosis, implants slipping, iron bra feelings, loss of sensation, difficulty checking for recurrances etc. and the % of women who deconstruct. Recon is a big money maker. Women who chose not to go through with more painful procedures are treated as oddities, told “you can always change your mind” and are more often than not left with a lumpy mess where they were chopped and stitched. If insurance pays for recon they should also pay to get a smooth flat chest

    1. Susan – there’s just so much they don’t tell us and it’s ridiculously inhumane that they don’t. This is why I’m so committed to making sure others know up front all of the possibilities. I’m so sorry for all you’ve been through.

  10. Like many others I thought I was alone. I live in Australia and risks are blurred over before Surgery and because I was like a Deer in headlights after being diagnosed I don’t recall if Nerve pain was ever explained as a risk. This debilitating pain has very little research or support and all too often we are being told it is in our heads. Drug therapy can help in some cases or ease the pain however we can be left feeling like a 3rd party struggling to function. After my mastectomy and axillary node clearance Rt breast stage 3 breast cancer,I struggled with chording ,phlebitis and diagnosed Mondors disease. I had 24 weeks of Chemo and 35 fractions of radiation. At the completion in May this year I felt fantastic for 3 weeks and then PMPS kicked in. People tell me how great I look because I don’t wear my ongoing pain on my arm and shoulder. I see everyday people telling the Brave I survived stories and it saddens me that I can’t relate as this ever consuming chronic nerve pain takes over my life. Thanks to you an the other amazing ladies that Have shared your stories it helps to know we are not alone . I have just recently attended a pain specialist in Brisbane Qld and been given some options to try. The first is a drug therapy and the 2nd is Spinal cord Stimulation. Fingers crossed something works….. I won’t stop looking for the answer

  11. I recently had a double mastectomy and then diep flap reconstruction. They used my lower abdomen to re construct my breast. I was in ICU for 7 days. It was then that I noticed an area just under the incision that I could not even touch without screaming. I could not wear anything that touched the area. I went to doctor’s appointments in my loose pajamas. When I told my doctor about it, he wasn’t sure why I had the pain. He did some research and thought just possibly they had sutured some nerves in the incision. We scheduled another surgery. When it was over, I had no more pain.
    I appreciate my doctor not dismissing my distress.

  12. I am 9 weeks past double mastectomy and in expansion process. I cannot bear any fabric touching my breasts. Has anyone found a way to access this?

  13. Thank you for this article. I’m in the same place! I’m 9 weeks past a double mastectomy and have constant nerve pain which my surgeon can’t seem to understand. I can’t bear to have any fabric touching my breast area. I’m wondering if you or any of the others in this thread have found any ways to address this issue.

    1. I’m so sorry you’re in the same boat. The only thing I’ve found (short of Rx’s that I don’t want to take) that helps (albeit temporarily) is peppermint oil. I use it at night. There is a private Facebook group for us called Surviving Post Mastectomy Pain Syndrome) – a lot of people have shared what they’ve tried. Truthfully, for me it’s little depressing to follow because I haven’t seen anyone find relief yet – but I’m still hopeful someday something will be found.

Leave a Reply

Copy Protected by Chetan's WP-Copyprotect.