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Inflamatory breast cancer survivor
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susanivan posted:
Hello everyone. I am the daughter of a IBC survivor who had her surgery and treatment (all extremely aggressive as she was stage 3 and the nature of this beast is aggressive). She was 76 at the time and the oncologist didn't expect her to survive through the second round of chemo prior to her double mastectomy (she had 4 rounds and then surgery, 4 more rounds and then 4 times the radiation given to a traditional breast cancer patient). My dad died while she underwent her first round.

It's been 7 years and while it's remarkable she survived, she has been in extreme chronic pain as well as having pretty bad lymphodema as a result. The pain is around the surgery site (scar) as well as under her arm . She can't bear to have anything touch her skin in these areas. Does anyone out there have this problem or have any advise??? We have tried everything from patches to pills to gels to machines. Her doctors (and myself) feel that the pain is caused by a number of things including nerve damage due to her mastectomy being SO radical, radiation and scar tissue attached to muscle etc.

HELP!!!!!!
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Rachael67 responded:
As I extended our care and support for Kim in what she is dealing with in order to help her mother, so, too, do I say the same things to you....Such daughters as the two of you are treasures!

Unfortunately, I don't know a great deal about IBC, and from what you say, your mother's case is even unique among those who do! She (and you!) have been through way too much! My heart goes out to you both!

Dealing with pain is complex and daunting. Have you kept after mom's doctors about help in that area? How about a pain clinic? Or seeking advice from another physician for a second opinion?

I can direct you to some possible information that might help. Back in 2006 station KOMO did a very fine report on IBC and had much follow info as well. Please check out www.KOMOnews.com/ibc.

Also, go to ibcsupport.org

And google "Inflammatory Breast Cancer"...This will give you many sites to explore also. (I am assuming you have already checked out any info on WebMD, correct?)

Please know that we are all here to help in any way we can...even if it is merely to reach out and hold your hand or give you a gentle hug when things are really bad. Come here whenever you have the need!

Blessings. Rachael
 
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kkb22 responded:
Welcome to the board. I had some of these same symptoms after my first diagnosis and treatment in 2005. After some time they did subside. Unfortunately it sounds like your moms isn't going to. To me it sounds similar to the nerve damage I had plus pain that comes with scaring.

I went to physical therapy for scaring discomfort. The scars, as I will say, cook to overdone and shrink. PT helps to stretch these out.

I also took a nerve blocking drug call Gabbapentin. This possibly could help.

A plastic surgeon may be another place to look.

If all this has been checked into I would agree that a pain clinic would be a good place to look into. I wish you all the luck in the world to help find a solution to this problem. I know where you are at as my mother died of breast cancer long before all the new wonderful drugs they have now. Keep us posted as to what you find out as I know this would help some here that are having the same situation.

Bless you and your mother.
 
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undefined responded:
I had IBC in 2012 into 2013, had 6 chemo, six week break, mastectomy, six week break then four weeks radio therapy, then ten months later corrective surgery which was done on top of the scar that is already giving me the same constant pain your mother was experiencing. I asked the surgeon who performed my last surgery about the pain and he said it would not go away after all this time. I find this easier to deal with as I have an honest answer. I too have the lymphoedema , which with help we are keeping to a minimum. Yes I still have the same pain especially when I have to wear a bra, by the evening it is unbearable. I am 50 years old. I dealt with the cancer and all the treatment remarkably, so I am told, but now, two years on I am struggling to get back to any kind of quality of life. I hope you have found some solution for your mother, then there is some hope for the rest of us without resorting to the strong painkillers which I take as one of,s when I am desperate as I know two young men who became addicted to them. I see the last reply you had was 5 years ago, you might not still be looking here but maybe this will help someone else.


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