Breast Cancer after Hodgkin's Disease

6 Posts | Page(s): 1 

Breast Cancer after Hodgkin's Disease

by Swan1968 on Tue Feb 21, 2017 03:48 PM

Quote | Reply

I would be very interested to hear from anyone who has been diagnosed with breast cancer having been exposed to mantle field radiation treatment for Hodgkin's Disease.

Back in 1992 at the age of 24 I received Mantle Field Radiation for Hodgkin's disease.  Two weeks ago I found a lump and swelling in my right breast and after routine tests have been diagnosed with breast cancer.  I am due to have an MRI in the next few days.  The lump is a grade 3.  I have been advised to undergo a double mastectomy.

I would love to hear from anyone who has a similar story.

RE: Breast Cancer after Hodgkin's Disease

by jilla on Thu Feb 23, 2017 05:34 AM

Quote | Reply

I was diagnosed with Hodgkin's when I was 14 (back in 1984) and was exposed to mantle field radiation.  I do not have any lumps or swelling in my breasts (I did need a diagnostic breast exam after my intial exam showed a "dense left breast" recently, but I was told that the findings were normal).  I  also was diagnosed with Thyroid Cancer in 2011 (thank God for the birth of my 2nd baby at 40 or I probably would not have realized it!) and have undergone a full thyroidectomy.  I have done some research and thyroid cancer is apparently a probable result of mantle radiation from 20 to 30 years prior.

I also have an autoimmune disease called Primary Bilary Cholangitis.  I was diagnosed when I had my 2nd baby(my liver functions were showing abnormal off the charts when I was in the hospital).  I cannot find anything that points to early radiation being a risk factor for the disorder.

I have read that breast cancer risk is much higher for those that have had full mantle radiation.  I was also told that I probably would not be able to have children because of the radiation (but I have two boys, ages 6 and 7). 

To make matters worse, I was told by my cancer docs treating me back then (all dead now) that I was "cured" after 10 years.  In other words, at about the age of 25, I did not worry about cancer any more.  I did not worry about it until the birth of my second child, at the age of 40 (this is when I was diagnosed with all the above).  I then called my local cancer center (the same that treated me as a teen) because I was worried about "secondary" cancers from the radiation, and requested an appt.  I was told I was not, and had never been, a patient there.  I was told they had no record of me.  I later found out that since my Hodgkins diagnosis was so long ago the center had destroyed my records.  I did manage to get an appt. with an oncologist who has since agreed to see my yearly, but I am still upset.  The oncologist did not beleive that I had full mantle radiation (my mother, thank god, copied most of the records), but he still stated that I only had radiation to my neck and head.  I kept telling him that I did not remember percentages as a young teenager, but I do remember that I was told I would probably never have children because my ovaries were being radiated.  I also told him I remembered the smell of the radiation (a chemical type smell).  I also offered to show him the indian ink dot tattoos that were used to line up the radiation machine (do you have those?)

Anyways, I hope everything turns out okay for you. I think it always better to be safe than sorry, especially with all the radiation junk exposure from the past, so if both need to go in order for you to live, let them go.

Wish You Well

RE: Breast Cancer after Hodgkin's Disease

by gymbosyl on Thu Feb 23, 2017 02:53 PM

Quote | Reply

On Feb 21, 2017 3:48 PM Swan1968 wrote:

I would be very interested to hear from anyone who has been diagnosed with breast cancer having been exposed to mantle field radiation treatment for Hodgkin's Disease.

Back in 1992 at the age of 24 I received Mantle Field Radiation for Hodgkin's disease.  Two weeks ago I found a lump and swelling in my right breast and after routine tests have been diagnosed with breast cancer.  I am due to have an MRI in the next few days.  The lump is a grade 3.  I have been advised to undergo a double mastectomy.

I would love to hear from anyone who has a similar story.
Yes, my Hodgkin's treatment was in 1980 and had breast cancer in 1991 and the other in 2006. Had mastectomies with both and chemo with the second. It is very common and I was told that mastectomy was necessary as radiation can't be repeated to that area. It's the treatment that keeps on giving ??. I had a non Hodgkin's lymphoma in my duodenum in 2015 that is attributed to the mantle radiation as well. If you are on Facebook there is a terrific group called "Hodgkin's disease survival repercussions from 1960 - 1990's only". If you ask to join it may take a day or so to get accepted but it is well worth it. The only drawback is that so many on there have so many more issues that occasionally I have to ignore the posts as to not worry about what may come next as I am in very good health right now. Good luck to you and feel free to ask for my email if you have any questions.

RE: Breast Cancer after Hodgkin's Disease

by Swan1968 on Fri Feb 24, 2017 07:58 PM

Quote | Reply

Hi Jilla

I want to thank you so very much for responding to my post.

I want to be honest, it isn't me but my twin Sister. She was diagnosed with BC last week and is in shock.  She was told by her doctor that it was highly likely caused by her HD radiation back in the 1990s.  No one had told her that she was in any risk!  So she's not just been dealing with the shock of having BC but also she feels let down by the health system here (apparently they tried to reach her but they were unsuccessful - her telephone number never changed from 24 years ago).  So a very similar story to you.

I am so sorry to hear what you've been through. My sister too was told it was unlikely she would have children, but two years later she has had her daughter followed by 3 sons.

Thank you again for sharing.

RE: Breast Cancer after Hodgkin's Disease

by Swan1968 on Fri Feb 24, 2017 08:01 PM

Quote | Reply

Hi Gymbosyl

Thank you for responding to my post.  I cannot believe what you've been through, it's humbling.  Thank you for sharing.  All this is still so fresh and new.

And thank for your information on Facebook.  None of us are alone.

RE: Breast Cancer after Hodgkin's Disease

by steveb50 on Mon Mar 13, 2017 03:47 PM

Quote | Reply

My husband had mantle radiation in 1985 and was treated with EVA in 1992 for recurrent Hodgkins disease. He has hypothyroidism, radiation fibrosis in the neck, shoulder, upper back and several occluded arteries but the biggest challenge has been esophageal cancer. Beware of esophageal cancer! He s treated at Dana Farber cancer inst and Brigham and Womens hosp in Boston. They are very aware of the long term effects from Hodgkins lymphoma.  He also sees a onco-cardiologist. That is imperative for all survivors. 

Best of luck to all, 

Tracyb

6 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.