Desperately need advice for my mom

sandra127
sandra127 Member Posts: 3
edited March 2014 in Breast Cancer #1
My mom had a double mastectomy one year ago followed by chemo and radiation on one breast. During the surgery, she had breast expanders put in. Since the radiation, the breast that received the radiation has been varying stages of black, purple and red. The skin is thin and looks like it could open at any minute. She is in constant pain and at times the pain is "shooting" and she yells out in pain. What scares me is that she's not the type of person to complain about anything and she has a really high threshold for pain - which makes me think that it's even worse than what she's telling me. It's been several months since the end of the radiation, and while the condition has gotten somewhat better at times, the improvement is not significant or long lasting. She went to some of the best doctors in NYC, none of whom are willing to do anything but prescribe pain medication. They have said that they've never seen a case this bad and had hypothesized everything from the surgeon not leaving enough skin after the surgery to remaining cancer cells. If they've never seen it this bad before, why aren't they suggesting something to help make it better? Thanks so much for any advice you can give.

Comments

  • Roxi1
    Roxi1 Member Posts: 39
    #2
    Hi Sandra
    I am so sorry for your Mom. Its an awful journey sometimes to get this disease under control. The pains are due to the fibrosis/scarring which has occurred in the breast tissue. Shooting pains are not abnormal after RT. It can take 6-12 months after RT prior to the patient's A/P being considered stable. You said your mom did have some improvement? How long has it been since RT stopped?
    Even though your Mom tolerates pain well, sometimes these 'shooting pains' catch you by surprise, before you have a chance to 'grin and bear it'. The good thing is that your mom should continue to see improvement. If not, there are various treatments for it, if your mom considers the shooting pains an impediment to her activities of daily living. Her oncologist or radiologist should be able to inform her of various treatments available.
    Hugs
    Roxanne
  • hounddog
    hounddog Member Posts: 115
    #3
    I would take your Mom to a specialist like MD anderson in Houston or some where like that because being in pain something is deffinately wrong. Talk to her oncologist also.
    marilyn
  • Idalia
    Idalia Member Posts: 76
    #4
    What do her own doctors say? If the surgeon put breast expanders in, is he planning on putting in breast implants? If there isn't enough skin, maybe he could take the expanders out. If there is even a suspicion of remaining cancer, there should be follow up to treat it. Shooting pains can be due to scarring. Mine lasted for months and sometimes felt like muscle spasms. Ask her oncologist and her surgeon about her problems. If you aren't satisfied, go to a teaching hospital or one that specializes in cancer. Good luck.
  • sandra127
    sandra127 Member Posts: 3
    #5
    Thank you all for your responses.

    I got in touch with her oncologist, surgeon, plastic surgeon and radiation doc yesterday. They still won't provide any answers - or even tell us that it is a result of the radiation. It amazes me that her skin is deep purple and as thin as it is and yet they refuse to identify the problem other than to say "it's the worst case I've ever seen." Wort case of what?? Anyway, the plastic surgeon did agree to schedule surgery at the end of the month to remove the expanders and put in the permanent implants. I'm worried because my mom believes that this is going to make the problem significantly better, and I'm skeptical. I'm now trying to find a medical (i.e., not cosmetic) dermatologist to see. I'd like to rule out the possibility of cutaneous metastasis. Any recommendations in NYC would be greatly appreciated. I hope that I'm not overreacting, but the improvement is almost nonexistant in the 4 months since radiation ended. I just feel that there might be something else wrong for there to be such little improvement in that amount of time. I hope I'm wrong.
  • Roxi1
    Roxi1 Member Posts: 39
    #6
    sandra127 said:

    Thank you all for your responses.

    I got in touch with her oncologist, surgeon, plastic surgeon and radiation doc yesterday. They still won't provide any answers - or even tell us that it is a result of the radiation. It amazes me that her skin is deep purple and as thin as it is and yet they refuse to identify the problem other than to say "it's the worst case I've ever seen." Wort case of what?? Anyway, the plastic surgeon did agree to schedule surgery at the end of the month to remove the expanders and put in the permanent implants. I'm worried because my mom believes that this is going to make the problem significantly better, and I'm skeptical. I'm now trying to find a medical (i.e., not cosmetic) dermatologist to see. I'd like to rule out the possibility of cutaneous metastasis. Any recommendations in NYC would be greatly appreciated. I hope that I'm not overreacting, but the improvement is almost nonexistant in the 4 months since radiation ended. I just feel that there might be something else wrong for there to be such little improvement in that amount of time. I hope I'm wrong.

    Sandra,
    I don't know of any resources in NYC, as I come from the other end of the country. However, on another board, www.cancerforums.net, one of the moderators is a radiologist and might help with your question.............
    Roxanne
  • inkblot
    inkblot Member Posts: 698 Member
    #7
    Sandra,

    It sounds unusual that your Mom could possibly proceed with having implants placed into skin that is so unhealthy. Seems this would just be asking for additional problems.

    With such thin skin, how can the docs put in implants? How do they know the skin will hold them, etc.?

    I'd suggest getting some second opinions and quickly...before the planned implant procedure.
    A dermatologist may have some ideas but your best bet may be a different radiation oncologist, for starters.

    I agree with your thoughts: The worst case of WHAT? I think the docs are very wrong in not telling your Mom exactly "what" it is that's going on. Not giving it a name, yet saying it's the worst case they've ever seen, is very strange indeed.

    Hope you can secure some answers with 2nd opinions and that your Mom can find some pain relief that is effective for her soon. To my thinking, this would be of greater priority
    and urgency than the seeming rush about the implants. Finding out what's going on with her radiated skin and getting rid of the pain would seem to be the first order of business. Just my personal thoughts about it.

    Best wishes to your Mom and hang in there with her and be her best advocate. Unfortunately, simply asking politely doesn't always get answers from doctor's. Push if necessary and get downright demanding if that's the only route to getting answers.

    Love, light and laughter,
    Ink
  • sandra127
    sandra127 Member Posts: 3
    #8
    Thank you, again, to everyone who responded. This site it so helpful and I'm sorry that I didn't use the resource until more than 1 year after my mother's diagnosis.

    I finally got a call back from the primary surgeon this morning. Apparently they have decided to pay attention because I've been calling nonstop and making a lot of noise. The surgeon wants to see my mother first thing Monday to determine whether she agrees with the plastic surgeon's decision to replace the expanders with implants later this month.

    I agree that it seems crazy to try to put implants in there when the skin looks like it's going to pop at any minute. He said that he will put smaller implants than he originally planned, but I don't know if that will compensate enough for the damaged skin.

    As I said originally, these are some of NY's finest cancer doctors, so it can be confusing when feeling like you disagree with their course of treatment (not to mention that I'm not a doc and failed biology;)). That being said, I'm going to encourage my mother to be skeptical of their offered solutions until we feel comfortable with the ultimate plan of treatment.

    God bless!
  • jchauhan10
    jchauhan10 Member Posts: 3
    #9
    Hi Sandra,

    There is a promising new drug therapy called Herceptin developed by Genentech. Your physician should order a lab test to determine eligibility for Herceptin treatment. The test kit is called "Her-2/neu antibody test kit". They take a very tiny sample of tissue and run the above test. If you have questions please feel free to call me at 925-963-6983.
  • MiaKrause
    MiaKrause Member Posts: 4
    #10
    sandra127 said:

    Thank you, again, to everyone who responded. This site it so helpful and I'm sorry that I didn't use the resource until more than 1 year after my mother's diagnosis.

    I finally got a call back from the primary surgeon this morning. Apparently they have decided to pay attention because I've been calling nonstop and making a lot of noise. The surgeon wants to see my mother first thing Monday to determine whether she agrees with the plastic surgeon's decision to replace the expanders with implants later this month.

    I agree that it seems crazy to try to put implants in there when the skin looks like it's going to pop at any minute. He said that he will put smaller implants than he originally planned, but I don't know if that will compensate enough for the damaged skin.

    As I said originally, these are some of NY's finest cancer doctors, so it can be confusing when feeling like you disagree with their course of treatment (not to mention that I'm not a doc and failed biology;)). That being said, I'm going to encourage my mother to be skeptical of their offered solutions until we feel comfortable with the ultimate plan of treatment.

    God bless!

    Implants are not the only option- have you looked into diep flap or gap flap reconstruction for your mom? Maybe she should wait and heal? I worry for her. Just a suggestion. Mia

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