Hodgkin's Survivors/Secondary Breast Cancer

hi HD survivors. I am unfortunately a return customer since my DCIS Right MX w/ silicone implant in 2008. I was diagnosed again w/ DCIS left side, and last Monday had the left MX and right implant removal. I'm so happy to be going the flat route. Healing well already.

I am a textbook case of the residual effects of the mantle radiation for HD. Breast cancer, thyroid removed, stiff vocal chord, double by pass heart surgery and shoulder sarcoma.

Just a warning to keep up on all the follow up. That original radiation is a hidden danger. Anyone else following the same path as me?

Kle

Kle that's exactly what my friend does. One step at a time and gets through it.

By the way , I too live in Boston. My Oncologist is at the Dana Farber

I had that feeling Kle.

I hope they are doing well by you. I'm pretty crazy about my doc there but I've known her for 25 years already.

April-

Thank you for joining us, and for offering your experience and support!

The Mods

Hi Kle,

Likewise, I was interested when I read your post on the similarities. I am doing great as far as my heart and no other issues. I do see a cardiologist annually and like you I seem to get slightly winded by the time I reach the top of a few flights of stairs. I do exercise but not as much as when I was told of my blockages. We moved back to our home state and my work schedule is making it hard for me to get back into an exercise routine as I had before.

It is nice meeting someone who has been through the same bumps in the road of life. I was expecting the breast cancer diagnosis for the past 20 years. My oncologist would always tell me to be sure and keep up with my mammograms due to the increased risk, which I did. I guess that's why I wasn't that shocked when I was diagnosed, was always expecting it every year.

Take care and carry on!

Hi Kle,

I am doing OK with the DCIS diagnosis, very grateful it was caught at an early stage. My mind was made up before my first visit with my breast surgeon. I knew a double mastectomy was my only option, and I chose no reconstruction. I decided to go flat and free 😁. My breast surgeon was somewhat shocked and gave me a week to be sure and talk it over with my husband some more. My decision stood and I have no regrets.

I don't have any dizziness however, don't know if you are experiencing this. It seems like my throat may be scarred from the radiation? Seems like food has a tendency to get stuck? Never had an issue with this until recently, always sure to have water nearby and small bites.

Also when you were diagnosed with BC, were you a little apprehensive when you were told you needed no further treatment? I was somewhat shocked when my surgeon told me to go home and get on with my life, no further treatment needed, see you in six months. I felt like I should be doing more.

Take care.

Hi Kle,

I truly find it amazing that we have so many of the same side effects. I also have that raspy, scratchy voice at times. My thyroid was totally destroyed about a year out from radiation, have been on synthroid since.

I agree with you as to paying attention to our bodies and keeping up with annual appointments, as much as I dislike going! Honestly believe it has saved my life, especially with the CABG.

I am grateful for the life I have been given and know that mine has not been bad at all and that so many people have been through much worse.

I will talk to my dentist at my next visit.

April

I haven't read through all the posts in this thread, but I wanted to share my personal conclusion on the Hodgkin's (with mantle radiation) to breast cancer journey...

In retrospect, I wish I had gotten a prophylactic bilateral mastectomy (P-BMX), and this is the advice I would now give to someone in my position.

Admittedly, had someone suggested this to me, I would have dismissed them, but with the benefit of hindsight, I now think differently.

Here are the pluses I see:

1. Just to clarify the risk: this article found a 30% risk by age 50 for those women who got chest rads for HD--this is the same as having BRCA.
2. I certainly did not know pre-dx that mastectomy is usually the only option for HD survivors even with very small tumors since we should avoid further rads. So, if you do get BC, you are likely to get a mastectomy anyway, and the BMX is perhaps recommended on the assumption that, similar to BRCA carriers, our risk of opposite-breast cancer is higher than average.
3. You can choose a surgical team at your leisure, and plan your surgery at your convenience, rather than in the panic of the post-BC diagnosis.
4. You will be eligible for a skin and nipple sparring mastectomy, which is not always the case after BC diagnosis
5. Based on my experience so far (just a few months!) reconstructed breasts are fine and you get used to them and IMO your quality of life can be mostly unaffected by fake boobs, and of course some women are fine with no boobs. I was initially horrified at the prospect of losing my breasts, but, based on my experience, you adjust to it quickly and it just doesn't affect you that much, and I am a very non-calm, neurotic person! Admittedly, they're numb and feel a bit strange, but they look fine, and boobs are just not that central to existence at the end of the day. Also, you will have the advantage of having the time to do a lot of research and find a great plastic surgeon.
6. You can avoid a lifetime of constant surveillance and worry. Skimming through the posts in this thread, it doesn't seem that everyone is aware that the guidelines recommend alternating between mammogram and MRI every 6 months. Studies have shown that this makes a difference in catching BC earlier in HD survivors. Insurance covers it for HD survivors. Mine was caught this way after not showing up on the previous mammogram. If you do not get a P-BMX, then you absolutely should be doing this. See Children's Oncology Group guidelines p.95
7. This is my big one: you avoid BC treatment (other than the surgery itself). I am lucky in that I don't need chemo, and this must be tough for HD survivors who have already undergone chemo at least once. A small number even need rads again. If you have hormone positive BC, you must also take some kind of hormone blocker or inhibitor or whatnot to reduce recurrence risk. If you are pre-menopausal, which many of us will be, undergoing either this or the chemo will affect your female hormones in non-fun ways, including likely premature menopause in the case of chemo. Based on my experience so far, taking tamoxifen has been terrible and I may not be able to stick it out, though I know many women are OK on it. I remember that I actually used to think that getting BC wouldn't be a big deal b/c I would certainly catch it very early. I did catch it early and it still sucks.

So, in conclusion, if I could get in a time machine and go visit my younger self, I would tell her to get a P-BMX. In my opinion, even if you have a 70-80% chance of never getting breast cancer (to put things in positive terms), it would still be worth it just to avoid the stress of the diagnosis and treatment, and of course the increased chances of a grim outcome. Fake or no boobs turn out to be a surprisingly minor downside and you will soon forget about the brief misery of the surgery itself. Keep in mind this advice applies only to HD survivors who got chest rads and I believe those who got MOPP have lower risk because of premature menopause, though I'm not sure how much lower.

Hi Michelle,

So weird...I haven't logged in here in many months, but did just as you replied! Nice to hear from someone who feels the same way. How crazy that an onc dismissed the idea when you brought it up. I have definitely seen it in the medical literature as an option that should be discussed with HD survivors who had chest radiation. No onc I saw over the years ever discussed it with me, though I suppose I was vaguely aware of the idea anyway. But I never would have done it unless everything I wrote above could some how have been drilled into my head!

In the year or so that has passed since I wrote that post, I still stick with what I wrote, but I would add that the whole fake boob thing did end up being more trouble than I had anticipated, mostly because I had pain for several months after the second surgery, but it seems to be getting better. Also, I had to cancel a surgery at the last minute when it was announced that textured implants are associated with--of all things--a rare lymphoma, so I went with smooth instead.

Congrats on getting through some really tough cancer treatments....you make me look like a real lightweight!

Sophie,

As a HL survivor (19 yrs remission!) I agree with you. Had I known what I know now, I would have had a pbmx, Having said that, my younger self likely wouldn't have done that!

I find it hard being a 2 time cancer survivor before I'm 50. Most people can't even begin to relate, Glad to have people who understand.