HD 15yrs out, newly diagnosed with DCIS

corgifan
corgifan Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Wish I had found this site sooner. I thought the tingling and hearing loss was just me!

I was diagnosed with HD in 1992 after a routine physical found a lump. Laperotomy, spleenectomy folloed by mantle and peri-aortic radiation (6 weeks maybe?). Re-occurance in my pelvis (or maybe it was always there?!) in 1993. Treated with ABVD (six courses) and then pelvic radiation. Cancer free since 1994......until Feb 2009. DCIS in left breast. Everyone I have spoken to has recommended at least a mastectomy or een a bi-lateral. With a 25-30% chance that it will happen again, a bi-lateral mastectomy seems like the best option - piece of mind wise. Seems like a drastic move though.....

Any thoughts? Experiences? I have an appointement with my surgeon on 3/24 to maybe set up surguery.....

Comments

  • Survivor86
    Survivor86 Member Posts: 18
    #2
    What is DCIS?
    Hi, I am a 23 year childhood hodgkin's survivor, I just had a mammogram and they found a spot on my left breast, I'm high risk for breast cancer due to the radiation to my chest. The radiologist said they would check it in 6 months, because my implant would make it difficult to do a biopsy, I told them to just take the implants out. I was pretty much dismissed probably because I have no medical insurance. I have filed for disability due to the numerous health problems I'm having from the late effects of chemo and radiation.
  • Kat09
    Kat09 Member Posts: 1
    #3
    HD 15 years out, also newly diagnosed with DCIS
    Hi Corgifan,

    I just found your post, and this site. I was diagnosed with HD, stage IIA, in Dec 1992 and treated with mantle radiation in 1993. Cancer-free since then,...until Feb. 2009. DCIS in left breast. Had two lumpectomies and now have clear margins. The DCIS was less then one cm. However, I am in the same boat as you - every doctor I have seen recommends a bilateral mastectomy due to high risk of recurrence. I am not ready for such a drastic measure for a small amount of DCIS. I am 40 yrs. old and still kind of in shock about this diagnosis. But I have am trying to seriously consider doing it as I also hate to worry about more breast cancer down the road.

    I would be really interested in hearing what you decided to do and how everything is going,..??? Hope you are okay.
  • lindaps
    lindaps Member Posts: 9
    #4
    Kat09 said:

    HD 15 years out, also newly diagnosed with DCIS
    Hi Corgifan,

    I just found your post, and this site. I was diagnosed with HD, stage IIA, in Dec 1992 and treated with mantle radiation in 1993. Cancer-free since then,...until Feb. 2009. DCIS in left breast. Had two lumpectomies and now have clear margins. The DCIS was less then one cm. However, I am in the same boat as you - every doctor I have seen recommends a bilateral mastectomy due to high risk of recurrence. I am not ready for such a drastic measure for a small amount of DCIS. I am 40 yrs. old and still kind of in shock about this diagnosis. But I have am trying to seriously consider doing it as I also hate to worry about more breast cancer down the road.

    I would be really interested in hearing what you decided to do and how everything is going,..??? Hope you are okay.

    Hodgkins Lymphoma 9 years out and just diagnosed w ductal TBA
    Hi Kat 09 and others,
    I've just received the diagnosis of a ductal carcinoma, still to be staged, no not sure if DCIS or infiltrating. I was HD stage 2B with ABVD and no radiation with 6 months of chemo with great response after 2 rounds. My oncologist always told me that I was at high risk of other malignancies and sure enough, a regular mammogram found a 3 cm mass. I had another mass removed in the other breast just 3 months after having stoopped chemo but it was benign. Neither my oncologist or surgeon recommended any specific treatment for me. They both went through the risk/ benefits of lumpectomy, mastectomy and bilateral mastectomy. I have elected to have the bilateral mastectomy because of a long history of fibrocysitc breast disease, lumpy/ bumpy breasts and not being able to discern when this present mass (which I have felt for months if not years) went from benign to malignant. I am now 56 years old and felt this was right for me. But you need to do what you feel is right for YOU. If necessary, get counseling to support you through this process. There is no WRONG decision. Make the best decision for you that you can do at this time. Godspeed and hope you can find what makes you feel best and get peace of mind. Linda
  • missde3
    missde3 Member Posts: 7
    #5
    lindaps said:

    Hodgkins Lymphoma 9 years out and just diagnosed w ductal TBA
    Hi Kat 09 and others,
    I've just received the diagnosis of a ductal carcinoma, still to be staged, no not sure if DCIS or infiltrating. I was HD stage 2B with ABVD and no radiation with 6 months of chemo with great response after 2 rounds. My oncologist always told me that I was at high risk of other malignancies and sure enough, a regular mammogram found a 3 cm mass. I had another mass removed in the other breast just 3 months after having stoopped chemo but it was benign. Neither my oncologist or surgeon recommended any specific treatment for me. They both went through the risk/ benefits of lumpectomy, mastectomy and bilateral mastectomy. I have elected to have the bilateral mastectomy because of a long history of fibrocysitc breast disease, lumpy/ bumpy breasts and not being able to discern when this present mass (which I have felt for months if not years) went from benign to malignant. I am now 56 years old and felt this was right for me. But you need to do what you feel is right for YOU. If necessary, get counseling to support you through this process. There is no WRONG decision. Make the best decision for you that you can do at this time. Godspeed and hope you can find what makes you feel best and get peace of mind. Linda

    DCIS
    Hi - I'm a 20 year survivor of HD. Stage IIIA. Radiation only was my choice of treatment (25 neck/chest, 25 abdomen). Didn't want chemo. Had 3 little kids at the time. I was in my 20's. April 13th I was DX with DCIS and IDC. The consensus is it was caused by the radiation. Had 2 spots in the left breast. Opted for bi-lateral mastectomies. Onc surgeon, rad onc put my case up to the tumor board. There were no other options. Can't do 2nd round of rad due to the damage. Had surgery 7 weeks ago. It's hard to be DX with another cancer after surviving one already and choosing a cure only to find out it's probably the cause of a new one. It's been very emotional. I also have had numerous other health probs - thyroid, neck probs, migraines, etc. Anyone else with multiple different probs?

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