Hodgkin's Lymphoma survivors now with BC due to chest rads

MamaFelice

I am on a quest to find any other women that are going through or did go through a BC diagnosis as a result of the radiation treatments to the chest received from treating Hodgkin's Lymphoma.

I was treated for HL 24 years ago. 2 1/2 years ago my annual onco said that a study came out stating that 20+-year survivors of HL are at high risk for BC, and they started to monitor me more closely and biopsy even the least suspicious things.

In May, a shadow was found on my annual mamma and went for biopsy to be safe and found BC. Totally shocked me!! I work very hard to make healthy choices every day, but docs explain that there is nothing I could have done because it is a result of the rads.

Now things become murky because I cannot (or should not) receive more rads to my breast....though one radiologist said it would be fine to receive which makes no sense to me. I had lumpectomy with clear margins but found micromets in 2 nodes. MammaPrint showed high risk leaving chemo recommended which I am fine with.....but it is the choice of additionally surgery that I am bumbling over. Docs say it is reasonable for me to be conservative with breasts. If I don't remove them will I worry that they are radiation time bombs waiting to explode with another unpredicted BC. The decisions are being left for me to make and I am a mess!

I would be thankful for finding anyone that has had to go through similar deliberations to please chime in-- thank you and blessings to all

pupmom

So sorry you are going through a second cancer diagnosis! But it would help if you put your bc stats into your profile. Hard to respond without that info.

MTwoman

MamaFelice, I think Pupmom is right, bc is too heterogeneous to give good info, the more specifics you give us, the better the info we can give back. There is a thread, however, which might help you clarify some of the issues involved in the lx vs mx question. It is here: https://community.breastcancer.org/forum/91/topics/849193?page=1#post_4828669

So sorry you're struggling with this decision, it can be hard for many women. ((hugs))

Lula73

We've already touched base on this topic, MamaFelice. Just wanted to say hi, answer a couple questions you posed here that we didn't cover and support you!

You already know that with the previous rads for hodgkins and subsequent higher risk for BC (quoted at 80%) double mx was the recommendation for me. Do I worry still? Yes a little. Would I have worried more without the bmx? Yes a lot. Am I glad I did the BMX? Yes

Two things that may help you as you're talking with the docs- 1) ask if they've ever treated a childhood cancer survivor who has had previous rads to the chest; if not, can they recommend someone who has. 2) when the docs want to quote stats to you or tells you "it's reasonable to be conservative" ask them to clarify if it's reasonable for you given your previous rads history. You'd think they could keep that in their mind but we found we had to keep asking things that way so that the docs remembered to include the history otherwise they seemed to fall back on their usual and customary protocol of what to say. Unfortunately, survivors like you and I are anything but usual and customary :-)

Don't be afraid to tell them that 2 rounds of the 'C' word is enough! And ask 'given my history what path will give ME the best shot at living til I'm old and grey without another BC diagnosis or recurrence?'

MamaFelice

First-- Thanks MTwoman & pupmom for informing me that my "stats" were not set as public......I hadn't even noticed! I hope that gives you the information you are looking for. Regardless of the HL aspect of my treatment, we are all still going through BC together and like to know how to empathize with the aspects we are each dealing with -- so again, thank you!

And Hi Lula! Thanks for finding me back here again! Hoping to find other HL survivors that have battled or are battling BC.....according to Duke, there are tons of us out there. Or this might help others like us moving forward. I know there will come a time when my breasts will be coming off in order to completely reduce the risk of future HL rads induced BC, but for this moment, I am starting to find some peace with waiting on any additional breast surgery, and instead go for aggressively eradicating this cancer with an ANLD followed by systemic treatments. Of course I just hope and pray that the ANLD shows healthy nodes, and I can rest that the disease is controlled in a greater metastatic sense. It is all so scary. Thank you for all your support!

MamaFelice

well, in case anyone comes looking for info regarding a similar case or situation, apparently, all the previous treatments and such has just contributed to a weaker chance of success. After 6 treatments of Taxotere and Cytoxan finished on 1/130/18, followed by 25 rounds of proton radiation finished on 5/25/18, on December 3, we discovered the BC had metastasized to my pancreas, spine, and brain. Moving into final effort to offer me hopefully a few extra months. I am thankful that my Hodgkin's lymphoma treatments gave me over 25 years of healthy living from a disease that only a few years before as not survived. Bummer it also had to lead to all of this. Best wishes to any others that check in here. 🙏🏻

beauz

mamafelice, I am sending you and your family lots of love and strength.

edwards750

OMG mamafelice so sorry. BC is such an insidious disease. I keep hoping and praying for a cure. 25 years is a long time but still hoping you get 25 more.

My son’s friend’s mother died a few weeks ago from TNBC. It just kept coming back despite the treatments. She was only 53. Of course my son is upset because of me and this is the second Mom of his friend’s to die from cancer.

I’m sure it’s hard to keep the faith but you sound like a very upbeat lady.

Diane

Daniel86

Gina, I am so very sorry about your recent progression. I know it sucks but as the Stage IV women have shown me, its not the end just yet and there are many successful paths to go through.

You were the first person ever to welcome me here when I found out my wife had been diagnosed with breast cancer 12 years after lymphoma. I know that helped me a lot to hear from you. Sending positive vibes and thoughts your way

Daniel

Lula73

MamaFelice- Not the update anyone wants to hear especially after all the treatments you went through. I am very sorry to hear this. Yes, the extra 25 years was a gift. There are so many things that wouldn’t have happened, wouldn’t have been experienced if not for the Hodgkin’s treatment. The song, ‘The Dance’ by Garth Brooks comes to mind everytime I encounter a new issue stemming from the Hodgkin’s treatment. Listening to the words soothes my mind/emotions. Perhaps it will yours too. And stage IV, while scary, does not mean imminent end of the line with BC as it does for other cancers. Please hop over to the stage IV group and talk with the ladies overview there. You have much more to experience before this dance ends. (((Hugs to you)))