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Possible Breast Cancer 12 Years Post Hodgkins

amacart
Posts: 2
Joined: Jul 2007

I was diagnosed with Stage IIA (bulky) Hodgkins in 1999 at age 19. Completed 12 weeks of Standford V Chemo and 20 treatments of mantle field radiation to the chest and neck. My thyroid failed immediately and I have been on meds for that for almost 12 years. I've had a few side effects such as heart palpatations/fluttering, chest pain, neuropathy in fingers.

I was always told about the risks of secondary cancers such as leukemia and breast cancer. Seven years post radiation I began getting yearly mammograms and MRIs. I was also told the radiation could effect my heart. My doc wants me to start getting a stress test every few years too. Luckily I've already had one as a baseline.

Every year I went back for check ups at the hospital where I was treated and then almost four years ago I moved to Florida. The first year I flew back for my scans and got the whole work up. The second year in FL my new doc gave me the Mammogram and MRI my original oncologist had recommended. However year three (last year) he refused and said he did not agree with getting them b/c of the false positives, more radiation risks, etc. I was not happy and he really didn't seem to know anything about me even though I saw him the year prior anyway. Right then I decided I wasn't going back in 2012.

So here I am in 2012, almost 12 years out. A lump has been found in my left breast on my MRI. I had an ultrasound to confirm. It's 9mm so at least it's small. I'm scheduled for a biopsy Monday morning via MRI. I have a lumpectomy scheduled for Wednesday morning. If the results are benign we will proceed. If they are malignant I believe we will cancel the surgery and discuss what options are.

Anyone else out there have this similar situation? Do treatments ever call for more chemo? Tamoxifin? There are so many different types of breast cancer it's making my head spin. I am just trying to understand all the options for if it's cancer. I'm 32 now and have no children yet.

Thanks!
amacart

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Amacart,

I too had Hodgkins in 1989 treated with mantle radiation and relapsed in 1994 treated w/ABVD. In 2007, a breast biopsy for calcifications post MRI (I insisted on adding MRI's to my followup plan). It was 2007 that I had a feeling I needed to take control of my health. My biopsy came back Invasive Ductal Carcinoma, stage 1, only option, double mastectomy. This did not bother me as I wanted a prophylactic mastectomy years earlier to avoid the almost inevitable dx of breast cancer for many Hodgkins Lymphoma survivors treated long ago. I never pushed hard enough for this.
My tumor was sent out for oncotype testing resulting in a score of 8. This meant that chemo would reduce my chances of a recurrence by 2%. I opted out, as I have heart damage from the previous rads and chemo. As for tamoxifen, I had gyno problems and a TIA, so I stopped it after 2 months. Radiation is not an option for us. (I think some pinpoint targeting of rads by a specialist may be an option?)That was 4.5 years ago. So the "only" tx for the Breast Cancer was mastectomy, no reconstruction, I was 47.
Luckily my original rad oncologist made sure I had annual mammos since I was 30. Unfortunately, I never asked for the reports , I had the same area for concern mentioned for 3 mammos. If I had a Long Term Adult Followup Doc at that time, he would have insisted on a biopsy 3 years earlier.
As for a stress echo, I have been getting them for about the last 15 years because of my rad oncologist. It wasn't until 2 years ago that I found the LT doc I mentioned, who sent me for a stress echos in the presence of a cardiologist who has extensive knowledge of our radiated/chemo'd heart. Also, the previous echos were done with radiation, a no no for us survivors. I gathered those results too and was shocked to read "poor study as the patient is too thin". I was never sent back to get a proper study. (The stress echo I get now is an ultrasound and treadmill test that takes the tech 6 times longer to do properly.)
A long winded response to you to say, don't let any doctor claim to know how to follow up on a long term survivor of HD unless they have experience in that area.
What is the reasoning for the biopsy on Monday and a lumpectomy on Wed? For me, no decision was made until the results of the biopsy. I did know one thing before, if it was cancer, all my docs suggested double mx and I agreed. I do know other HD survivors that had lumectomys with close follow ups. Also, many have had prophyalactic mx's before any cancer dx. Additionally, the leading BC specialist at Fox Chase and Memorial Sloan Cancer Center confirmed the decisions of my local doc and myself.
Hopefully, you will avoid all of this by getting a benign result, if not, you may want to take the time to get a few opinions for your unique circumstances.
Finally, a few years after my BC, after much searching, I was led to the specialist at Memorial Sloan Kettering Cancer Center that is aware of our unique circumstances as a survivor. There are many similar clinics throughout the states. When I met my doctor he explained to me that all radiated HD survivors have tachycardia and the reasons why and when to consider meds. Up to this point all my docs said I had an anxious heart. Now I feel i have the best medical team in place to manage any potential side effects from treatments.
It sounds like you are assembling your team too. I wish you all the best and try not to worry while awaiting this biopsy.
Cathy

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hope your biopsy went smoothly and that you get benign results.
Cathy

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