DCIS 10 years after Hodgkins Disease-any others?

solson
solson Member Posts: 3
edited March 2014 in Breast Cancer #1
I have been free of cancer for 10 years after surviving Hodgkins, and just recieved a DCIS Stage 0 dx. I am , as well as my doctors, leaning towards a bilateral mascectomy, with a latissimus reconstruction. I have been assured that I am not overreacting, as the reality of cancer reacurring is very real. I don't think I could bear the idea of chasing shadows the rest of my life, and I have two beautiful boys, 14 mos, and 9, who need me. Has anyone out there been through this experience. I need some fast answers, so direct e-mails will help. Remember, Moms' w/ babies can't spend alot of time searching on the computer. I am determined to be done with this, and admire everyones' strength and candor on this site. I am still in shock that I have cancer again, and am wondering what elso is going to pop up as a result of the radiation I had. HELP.

Comments

  • gayj
    gayj Member Posts: 38
    #2
    A bilateral mastectomy seems like a radical solution to a contained Stage 0 DCIS. Have you gotten a second opinion? Do your doctors think you are at a high risk for recurrence because of the Hodgkins Disease you had 10 yrs. ago or because of a family history of breast cancer or because the cancer could be particularly aggressive? A lumpectomy is a relatively simple procedure - day surgery with a short postop recuperation. The more complicated and lengthy the surgery, the more that can go wrong. Also, with mastectomy they can't remove all breast tissue on the chest wall, so there still is a chance (hopefully very small) that cancer can recur in the tissue that is left. Also, has a biopsy been done? Do you know if the cancer is ER+ (80% are) because if it is, Tamoxifen might help prevent another recurrence. This is such an important and difficult decision (difficult because there's no clear-cut, consequence-free choice available). If you can't do the research because of time constraints, perhaps you can appoint another family member or friend to do the research (internet as well as books) for you. Doctors are not infallible and doctors do have their biasses; personally I wouldn't and didn't rely on one opinion alone. I had an invasive Stage II lobular carcinoma and a condition called LCIS. I opted for lumpectomy plus radiation even though there's a 20% risk that the LCIS could later develop into an invasive cancer. I decided to take that risk, because I figured the odds (80%) are better that I won't develop an invasive cancer again, especially getting off HRT and on Tamoxifen. Of course, this means my doctors and I will have to watch my breasts closely for many years (I call it boob-watching). And chances are if another invasive cancer turns up, at least we will be getting it early, and then I'll have to decide again what to do. An influencing factor in my decision was the research I read about mastectomy and reconstruction and the risks and possible side effects involved. Best wishes to you. - Gay
  • jeancmici
    jeancmici Member Posts: 665 Member
    #3
    I read not long ago - and will look for the article to be more specific- that young women - teens - twenties - who survived Hodgkins are at greater risk for developing breast cancer because of the radiation.

    Before so many people survived Hodgkins, this was not so apparent. I believe that differences in the way radiation is given now for H's will improve the outlook but not for those already where you are. The same with radiation to the breast after lumpectomy- people were more often left with congestive heart failure a few years ago. It can still happen with left breast involvement.

    By all means get a second opinion at a cancer center which specializes - altho' you may have gone to the nearest one already.

    Good luck and you will be in the prayers of a lot of people here.

    JEAN
  • solson
    solson Member Posts: 3
    #4
    gayj said:

    A bilateral mastectomy seems like a radical solution to a contained Stage 0 DCIS. Have you gotten a second opinion? Do your doctors think you are at a high risk for recurrence because of the Hodgkins Disease you had 10 yrs. ago or because of a family history of breast cancer or because the cancer could be particularly aggressive? A lumpectomy is a relatively simple procedure - day surgery with a short postop recuperation. The more complicated and lengthy the surgery, the more that can go wrong. Also, with mastectomy they can't remove all breast tissue on the chest wall, so there still is a chance (hopefully very small) that cancer can recur in the tissue that is left. Also, has a biopsy been done? Do you know if the cancer is ER+ (80% are) because if it is, Tamoxifen might help prevent another recurrence. This is such an important and difficult decision (difficult because there's no clear-cut, consequence-free choice available). If you can't do the research because of time constraints, perhaps you can appoint another family member or friend to do the research (internet as well as books) for you. Doctors are not infallible and doctors do have their biasses; personally I wouldn't and didn't rely on one opinion alone. I had an invasive Stage II lobular carcinoma and a condition called LCIS. I opted for lumpectomy plus radiation even though there's a 20% risk that the LCIS could later develop into an invasive cancer. I decided to take that risk, because I figured the odds (80%) are better that I won't develop an invasive cancer again, especially getting off HRT and on Tamoxifen. Of course, this means my doctors and I will have to watch my breasts closely for many years (I call it boob-watching). And chances are if another invasive cancer turns up, at least we will be getting it early, and then I'll have to decide again what to do. An influencing factor in my decision was the research I read about mastectomy and reconstruction and the risks and possible side effects involved. Best wishes to you. - Gay

    Thanks for answering , Gay...I have already seen 2 oncologists, 2 oncology surgeon, 1 who is a breast specialist, a radiologist, and a plastic surgeon , so far. I have also spent tons of time researching on the internet..all of the treatment options.Maybe that's why I don't seem to have alot of time these days. The doc's are all deeming the masct. as reasonable due to my past CA history, and from what I am telling them about my views....Chasing shadows, as my husband and I call it, is going to freak me out every 6 months. I am VERY susceptable to all types of breast CA, and noone can tell me for sure how many other little DCIS cells are lurking around. It is Comedo, high grade, so I am extremely fortunate to have caught it so early...and I am not a gambler. I HATE playing odds. I spent a week in Vegas once and only spent 70.00 gambling. I am still not 100% sure which way I will go...I trust the WOMAN breast specialist, who is also a top notch surgeon from Loyola University, and a close family friend. She sees appx 100 breast cases aweek at her practice, she's seen it all. She is also the Medical Director for my brother's Air ambulance company....She is consulting with my "team" now, and I should hear her final reccomondation early this week. I may not be a candidate for more radiation, as I had a pretty hefty dose already, and I am not so sure I want more, knowing/living the afteraffects. I am just spending the weekend not thinking about it, or trying not to, anyways. I know I have a lot of time to find my best decision. I am praying that God will erase my fear to lead me to the best choice for me. Soooo...I'll keep you posted.
  • jeancmici
    jeancmici Member Posts: 665 Member
    #5
    solson said:

    Thanks for answering , Gay...I have already seen 2 oncologists, 2 oncology surgeon, 1 who is a breast specialist, a radiologist, and a plastic surgeon , so far. I have also spent tons of time researching on the internet..all of the treatment options.Maybe that's why I don't seem to have alot of time these days. The doc's are all deeming the masct. as reasonable due to my past CA history, and from what I am telling them about my views....Chasing shadows, as my husband and I call it, is going to freak me out every 6 months. I am VERY susceptable to all types of breast CA, and noone can tell me for sure how many other little DCIS cells are lurking around. It is Comedo, high grade, so I am extremely fortunate to have caught it so early...and I am not a gambler. I HATE playing odds. I spent a week in Vegas once and only spent 70.00 gambling. I am still not 100% sure which way I will go...I trust the WOMAN breast specialist, who is also a top notch surgeon from Loyola University, and a close family friend. She sees appx 100 breast cases aweek at her practice, she's seen it all. She is also the Medical Director for my brother's Air ambulance company....She is consulting with my "team" now, and I should hear her final reccomondation early this week. I may not be a candidate for more radiation, as I had a pretty hefty dose already, and I am not so sure I want more, knowing/living the afteraffects. I am just spending the weekend not thinking about it, or trying not to, anyways. I know I have a lot of time to find my best decision. I am praying that God will erase my fear to lead me to the best choice for me. Soooo...I'll keep you posted.

    :-) Sorry to say this but....
    I am wondering why you would have posted here. You already have more experts on your case - even a family friend who is an expert - and yes, I would think bilateral is the way to go so looks like you are all set.

    Your doctors should remind you - which is a damper for a 'non-gambler' - that there are no promises with cancer - just the best treatment deemed possible in a given situation and then a positive attitude and trust in God.

    Good Luck,
    Jean

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