DCIS - treatment options following Hodgkins disease

Anniet

I was diagnosed with high grade DCIS with comedo necrosis. I met with the doctors at Mass General Hospital yesterday and was told that I am not eligible for radiation treatment because I was treated 18 year ago for Hodgkins disease. The doctors strongly recommended the bilateral masectomy, but I was given a couple of options:

1. a biopsy of a second calcification and if it is not DCIS a lumpectomy (no radiation) with a 30%+ chance the cancer would recur.
2. If the second biopsy showed cancer a bilateral masectomy.
3. A bilateral masectomy due to high chance of recurrence

Has anyone been in a similar situation? Any ideas, suggestions? My tendancy would be to take the risk having survived Hodgkins already. My family members say I am crazy and my husband is on the line as I am.

Thanks,
Annie

maize

Hi Anniet,

You wrote you can't have radiotherapy because you had it in the past for Hodgkin's disease.  As I understand it, it is now understood that there is a risk of radiation for Hodgkin's disease leading to secondary cancers, like breast cancer, sometimes years after the radiotherapy for Hodgkin's. 

It's wonderful that you are a survivor of Hodgkin's.

Did your doctors tell you whether or not hormonal treatments (Tamoxifen, etc.)
would be helpful since your DCIS cells are ER and PR positive?  If you don't have DCIS in other areas of the breast or breasts, they give you the option of lumpectomy without radiation, as long as you understand the risk of recurrence?

Have you considered getting a second opinion?  A second opinion from another medical source might also be helpful to you while making your decision.  Making decisions about DCIS treatments, the risks versus benefits, the unknown, unpredictable future, is really difficult, and, IMO, there aren't any easy answers. 

Here are links that might be helpful:

http://community.breastcancer.org/forum/47/topic/764830

http://community.breastcancer.org/forum/47/topic/783805

http://cancerchat.cancerresearchuk.org/thread/1354

http://www.cancercompass.com/message-board/message/all,14349,0.htm?mid=136226

http://csn.cancer.org/node/166492

Anniet

Hi,

Thanks for your response and the links.  I plan to get a second opinion and hopefully they won't recommend such drastic treatment.  I was told because the DCIS is high grade and their is comedo necrosis they usually do a umectomy followed by radiation.  They discussed Tamoxifin, but suggested it might be used after a masectomy, not in place of radiation.

maize

Anniet,

The options seem so drastic, don't they?  I hope they give you the choice.  I read that one of the oncologists said the current treatment is "slash, burn and poison" and that someday that might all seem barbaric. I'm sorry that it's all so drastic and I really hope that one day soon, there will be better treatment options.

The MO told me that I have to have radiation and take the Tamoxifen or go back and get a mastectomy.  What a choice!  I am a little concerned that yesterday she said it was a large area of DCIS--because the surgeon and the other oncologist said 1 cm isn't considered a larger sized DCIS.  The doctors may have different opinions about your case.  That's why I think a second opinion is so important.

Some women are relieved from worry after they have a mastectomy, and are not sorry they had a  mastectomy, but IMO it isn't a simple thing to have a mastectomy and every choice has consequences. Every woman has her own opinion about what is the wisest choice--if you get a choice.   Ultimately, we have to do what we have to do, though, don't we?  I hope you get a choice.  It sounds like you may get to choose.  I am getting a second opinion about the type of radiation, hoping for a safer option than the one offered.  What a rigamarole to get all of the slides, scans, reports, chart notes, etc., sent to the other specialist--and I feel like the doctors will be offended that I want a second opinion about treatment options, interpreting it that I am doubtful of their judgements.  A second opinion or even a third opinion, if possible, might help. It is your life, and no matter how concerned they are about their patients, it's still your own life and you need the opportunity to make informed choices.

I am not clear about the meaning of comedonecrosis, but I did read that if they squeeze the duct when there is comedonecrosis, some substance comes out almost like when you squeeze a tube of toothpaste. Comedo makes me think of a pimple. Necrosis is the death of some of the cells. You might get a somewhat different opinion from another specialist about what would be your best options. Wishing you the best.

abriddick45

Anniet -

While looking for information for a friend I couldn't help but read your post and respond.  I am also a Hodgkins survivor and was in your shoes 4+ years ago.  I also felt that the doctors were overeacting recommending a double mastectomy.  Its ironic that as survivors we are more willing to take risk or not always absorb the reality of our situation. 

I received three opinions from three different doctors and all recommended the double mastectomy based on my history.  From each one I learned something that led me to validate it was the best option to reduce all future risk.  The deciding factor for me was when the doctor said it was not a matter of "if" my DCIS would turn invasive it was a matter of "when" which would then mean that my life would be at risk.  The chemo options for survival would be limited due to the chemo I had already received during my Hodgkins.  Also if that happened I would have to do the double mastectomy anyway.  This information pretty much sealed the deal for me and my family to choose the double and elimanate all risk.  Thank God I did as 3 months prior to my double I had a mammogram and MRI which said I was clear after my lumpectomy but after my surgery the lab reported finding DCIS in my left breast that was never detected and my right breast was already A-typical again.  Had I played the odds I would have lost big.  Also, my childhood friend that I met and we both fought Hodgkins as kids ended up with DCIS and was also told her best option was a double mastectomy. 

There are less treatments and the risk higher for those of us with our history.  A double mastectomy is not an easy decision but knowing what I learned and being on the other side of it I will never have to be concerned about Breast cancer nor fight for my life again made it the right choice for me.  Also, since we are high risk for other cancers (ie lung, skin etc) due to our treatment of our Hodgkins that leaves those treatment options available, hopefully not, but if necessary. 

That said I am sharing my experience and knowledge so you understand "why" they are pushing you in that direction.  It is not an extreme treatment when your options are limited to begin with.  I wish you the best of health whatever you choose.