Breast Lymphedema and Chronic Breast Pain

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BarbaraT54
BarbaraT54 Member Posts: 14
edited January 2017 in Surgery - Before, During, and After

hi - I am a newbie and am really sneaking over from my "own" ovarian cancer :) . I am a two time ovarian cancer survivor with BRCA2. I read an article by my own plastic surgeon on breast cancer.org and really needed to vent !

When I was almost 5 years NED, my high risk oncologists and gynecological recommended a prophylactic double mastectomy. I had been taking Tamoxifen, but it seemed to be the right time.

All of my physicians are with Penn Medicine and started researching everything about reconstruction options. It was highly recommended that I was a perfect FLAP candidate - I had an abdominal hernia that needed repair and a pretty horrendous abdominal scar. I was 59 and had no other health issues, retired with unlimited time to cooperate. The "free" tummy tuck was really highlighted to me and the naturalness of the FLAP,etc.

It seemed this was the way to go for me. I had the 10 1/2 hour double mastectomy and FLAP construction in July 2013.

Since that day, I have not had ONE PAIN FREE moment! I had a very successful surgery, no complications; aesthetically my breasts look great. Every doctor and nurse are very impressed.

Unfortunately, my plastic surgeon was very flippant about the pain and said liposuction would help with the swelling. His office manager thought I was looking for an excuse to get out of Jury duty!

When I called to come in again that October, I asked the plastic surgeon if I should be doing scar massage or physical therapy he had me dobdone simple stretches and said I was "fine" - everything normal.

I learned from my high risk oncologist that there was a breast rehab physician literally upstairs from my plastic surgeon. Who knew?

She diagnosed breast Lymphedema and in December I told her I thought my hernia was already back and that I thought I had Post Mastectomy Breast Pain Syndrome. I did. I also have never ending abdominal tightness and pain. Thank you tummy tuck.

Anyway, in February, 8 months after breast surgery, my ovarian cancer was back. More surgery and chemo.

Cut to today, chronic pain still here. I have tried everything - I am in my 4th round of Lymphedema therapy. I see an integrative MD. I have tried acupuncture, dry needling, drugs, meditation, physical therapy, ice, heat. You name it! I am in physical therapy 3x a week!

I do not regret my double mastectomy as I am at high risk for breast cancer. What infuriates me is that my PS never discussed the remote possibility of any post FLAP pain, connective tissue, scar tissue issues, excruciating abdominal tightness and pain. After surgery, zero guidance regarding physical therapy, scar massage and the breast rehab center.

Ironically, the fear of ovarian cancer recurrence is paramount in my mind and causes intense anxiety, but there is no physical pain or issues with the quality of my life.

Unfortunately - the breast surgery and FLAP reconstruction causes me to be in 10 plus pain even in my sleep, walking, doing anything! Just sitting hurts.

A cautionary tale about FLAP reconstruction. My breasts and flat stomach look great- I would take my flabby belly back any day.

Any suggestions are greatly appreciated. The Chief of Pain at Penn suggested Methadone !

The pain is terrible, but being cancer free is something to be grateful for every day!

Barbara

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2017

    Hi Barbara, and welcome to Breastcancer.org,

    We're sorry you're experiencing so much pain! You're sure to find great support here.

    In fact, you may want to join in on the Post Mastectomy Pain Syndrome thread where others are discussing similar experiences. We hope this helps!

    --The Mods

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2017

    Have you tried a Chiropractor?

    I was never one who 'believed' they could do all that some said they do - so never went to one. Several yes ago, my Dressage gelding was having issues that Vets could not figure out. My trainer suggested having Dr Max out to see him. (Dr Max was an elderly human Chiropractor who had branched out to horses to help his daughter's barrel horses - from there he went on work on many competition horses in many different disciplines.). I did have Dr Max out to him and it made a huge difference immediately. Had to have him adjusted a couple of times after that - he'd always let me know when he needed another adjustment by starting to carry his tail to the right when being worked. Had a made that had been a broodmare all her life before I got her. All I did with her was pleasure trail ride her but she seemed a bit 'stiff' in hindquarters so after the positive results with gelding, I decided to have Dr Max check her out. She had issues in lower back and hips which were resolved with chiro.

    I know - horses are horses and not humans but they also feel pain and have no pre-concieved ideas of what will or won't work - as I had had for years. I now see a fantastic chiropractor for myself (have lots of 'aches and pains' from years of 'abusing' my body all my life by being a very active outdoor woman) and she definitely helps.

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  • debiann
    debiann Member Posts: 1,200
    edited January 2017

    I had breast swelling and pain on one side for two years after my flap surgery. My PS and BS just kind of threw their hands up and said it happens. Neither offered any solutions. The pain was getting so bad I thought I'd rather have the breast removed. My PS moved before I had nipple recon, so I had to see someone new. I told him about the pain and he said he would see what he could do. During nipple/areola recon he "cleaned out the breast envelope" and removed a lot of necrosis. I felt better immediately.

    I also saw a lymphedema pt. Between the two treatments my swelling and pain are almost entirely gone. I do need to be careful about the amount of strenuous activities I do and certain bras cause edema, but its all very manageable now.

    I hope you can find a solution to your pain too.

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  • BarbaraT54
    BarbaraT54 Member Posts: 14
    edited January 2017

    hi- thanks for your reply. I do see a chiropractor on a regular basis and also get reiki massage there every other week. It does help a little temporarily.

    It's very frustrating and perplexes every health Practioner I meet :)


    Best,


    Barbara

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  • BarbaraT54
    BarbaraT54 Member Posts: 14
    edited January 2017

    Hi- Thanks for your reply. My Lymphedena therapist says my swelling is a lot less and my range of motion has really improved. Unfortunately, my pain hasn't gotten the memo!

    I am going to ask my oncologist about breast necrosis. Is there any way to diagnose it without surgery? I have been told more surgery would definitely increase scar tissue.

    Best,

    Barbara



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