BC Dx and Hodgkin's Disease Radiation Treatment

mollyinco

hi all,

I am relieved to find this forum. In May2010, I had a BMX with immediate reconstruction after finding a mass in my left breast that tested as IDC. Due to my Hodgkin's 18 years ago (I had ABVD plus mantle rads to chest and upper abdomen) it was recommended I have the BMX. It was not until I was diagnosed with BC and saw a radiation oncologist that I learned that I was at such high risk for BC because of my former treatment. IT was shocking to hear every doctor I spoke to (oncologist, radiation onc, breast surgeon and plastic surgeon)  tell me that I was classic in showing up with BC at this timeframe. I had no idea. So here I am, just finished my third round of chemo (Taxotere and Carboplatinum) with 3 more to go. Still have to decide on radiation. The radiation oncologist said he'd look at radiating just the nodes since I had 3 that came back positive. The interesting thing was they found only 6 nodes altogether under my arm and they feel this is due to the prior radiation. I'm conflicted over doing any radiation this time around but won't make a decision until I've spoken in depth to the rad onc again. It's a comfort to know there are others out there in this situation. I wish my regular physician and the radiologist who did all my mammograms/breast ultrasounds over the past decade had known how at risk I was. I had multiple fibroids in my left breast over the years and micro-calcifications in the right breast, but no one ever mentioned anything about my Hodgkin's treatment put me in the high risk category for BC. In fact, I was treated as a normal patient. As for other SE from Hodgkin's, I too have asthma, low BP, headaches, low thyroid and feel as if food often gets stuck in my throat.

taranebraska

Welcome Molly.  This discussion has gotten pretty quiet lately, but hopefully folks will join in again.  I think I've seen your posts elsewhere.

When I had Hodgkins in 1997, I only remember the follow-up care doc simply telling me I needed an annual mammogram now, instead of in 6 years when I hit 40.  I'm 46 now, and my BC was caught in a mammogram.  I didn't realize, and I'm not sure anyone quite has the exact % numbers on how more likely we are to get BC, but it is a risk factor.  I only had radiation to my mantel field and abdomen, and didn't have any chemo then.  I may be facing chemo now, but we'll see after Wednesday.

My docs last summer never totally settled the questions about more radiation in my breast.  At first glance, it was a very concrete, "no".  But the one surgeon wanted to do mammosite radiation after lumpectomy, and it didn't seem anyone was really telling him no.  No one was really sitting me down and laying out all my risks as I heard that too many women were panicking at the first sign of BC and doing radical mastectomy.  I left that doctor's care and went to another hospital who also said a concrete "no" to radiation.  So, I only did a lumpectomy. 

Now, just had my BMX on Aug 10, which I should have had last year, but we can only look forward.  In June, only 10 months later, I had new spots that have turned out to be IBC.  So, yet another surgeon later, revisited the issue as he thought since my spots were potentially outside the mantel field of radiation, we might still consider the mamosite radiation.  Quite frankly, that was the expertise of the one surgeon.  After the new surgeon consulted with all the other docs, including the oncologist and radiation guy, the answer was treatment should have been a mastectomy.  Beside the Hodgkins, I never had kids, I'm pre-menopause, my DCIS was grade 3, and with new spots and an MRI that read "fair amount of disease throughout" .

Luckily, I haven't had any other post Hodgkins issues except for L'hermette's syndrome, which is just tingling from my middle back down through my legs when I start exercising.  But that's it.  I have a booklet, and I'll look for the web link, that is supposed to be a guide for doctors on how to look for future problems given the doses of radiation to different parts of our bodies.  I hope to review that with my oncologist this week, too.

Good luck Molly.  I keep checking this board so I'll see you here, too.

Caroline-H

Thanks Taranebraska for planning on looking up the guide for doctors; that'll be great to get more ideas of what to excpect. I too have advocated for that and will be getting a CT scan tomorrow to check out the rest of my body. That'd be nice to have more ideas to talk about with my doctors this week.

Caroline-H

I just found a provincial guideline on the British Columbia Cancer Agency website:

"For women who had radiation for Hodgkin's disease or other childhood cancers, screening may be indicated earlier due to the high risk of breast cancer, particularly if the radiation occured in teens or early 20s (annual mammography for women beginning 10 years after diagnosis of Hodgkin's lymphoma or at age 40 years, whichever comes first). "

missde3

all my docs said that females who received radiation have a 30-37% chance of developing breast cancer.  VERY high risk.  i have been told all these years by my rad onc (i still see him yearly for follow-ups) that i'm a high risk.  so, i knew it but no one ever said to have a bmx prophalacticly (spelling?).  my new onc is so concerned about my lungs, skin, thyroid, etc and my cardiologist is very concerned about heart and artery damage.  my thyroid is already dead - can't really be found on a sono - i've been on meds for that since 3 mos after the rads.  my swallowing is poor, muscles are atrophied, neck is bad, shoulders are bad.  we just have to be aware. 

mollyinco

i'd be very interested in the link to that booklet too. i need to make an appt with the radiation oncologist soon to discuss possible rads in the lymph nodes but to be honest my hubby/i are not even close to thinking this is a wise idea given all the radiation i had with hodgkins, must make the appt and face whatever is suggested, then pray over the decision

taranebraska

I haven't been able to put my hands on my paper copy, and I'm googling and not coming up with it.  I will look again in my bags that are in a pile ... sorry for the delay

mollyinco

my radiation oncologist gave my the NCCN guidelines for Hodgkins. Unfortunately i cannot figure out how to put the attachment on here so if you're interested, just email me and i'll send it.

molly.guthrie@comcast.net

he also said based on my previous radiation and the fact that only 3 nodes were cancerous, he is recommmending NO radiation for the BC!! YIppee!!

mollyinco

http://www.nccn.org/professionals/physician_gls/PDF/hodgkins.pdf

go to page 15

if there are difficulties, just email me:)

hope this helps!

rSunshine

hi  i am also one of u guys. im off to get chemo in a few for the third time in my  life.  ive had breast cancer over and over again because of  the radiation to my chest when i was 18. im 39 now and pissed off that i have to keep going through this. the breast cancer has spread to the outside of my bowels. they call it periotineal mets.all of my problems are due to the hd cancer i had when i was 18. should have never taken the radiation.

taranebraska

Hi rSunshine - Sorry to hear of your long history with the battle.  When you had radiation - was it only to the mantel/chest field?  I had radiation to my abdomen in addition to the chest - because I refused to do any chemo. 

I am worried not just about recurrence of BC but the long term effects of radiating my abdomen.  One of these I need to dive into the research and get some risk %s...

rSunshine

hi taranebraska, yes i did have the abdomen treated as well and i do take medicine for my thyroid too. this has been a long road for me. i just got back from chemo and im ok for now...not sure what is to come later. i hope this will work for me.

taranebraska

FYI- I haven't read this in detail, or even looked at how a doctor should use it.  follow the link at the bottom if you can, or cut and paste it, and then you can download a free pdf of this report.

Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers

New! Version 3.0 of Long-Term Follow-Up Guidelines

http://www.childrensoncologygroup.org/disc/le/

2ndttimearound

Hello! Glad to find this information, due to I am a HD survivor (15 yrs!!) and now have BC.  Wow!! If we only knew then what we know now!  I remember them telling us that I would be back...but not at this time frame.  I feel like other do...why are we not treated differently when comes to screenings? Why are the dr's not looking closer at our screenings, especially when more & more info is coming out that HD patients are coming up BC positive in these time frames?!  Yes, this all makes me very angry!  I was diagnost early this month and today find out that the best option for me is a bilateral mastectomy with no option for radiation!  I had HD at 24, with a laporatomy and removal of my spleen, the radiation destroyed my thyroid-so med's every day. Now, at 40 BC. 

Is a BM really the only option?  And, do I go with a BM with reconstructive at the same time? I am so confused and mad at the medical field for not taking more effort in watching out for all of us.

(Deep breathe....)Okay, so I feel a little better, but really would like to hear from anyone who has undergone just a BM & BM w/reconstruction at the same time. 

Thank you all!!

taranebraska

Hi 2ndtime around.  Sorry to meet you here, but you've found a good place.  You'll find lots of helpful information that you can talk with your doctors about.  Hopefully you've found a good doctor that will encourage your questions and give you even more information and help you make good decisions for you.  If you don't, you've got these lists to help you out.

My HD doctor said I needed to start having annual mammograms, so I did.  He didn't tell me I was 4 times more likely than other women to get BC.  Would I have acted differently if I had known?  I don't know.  I tried the vegetarian health route for a couple years after HD, but didn't stick with it.  I can kick myself for a long time about what I should have done differently.  It's hard to process the shock of the BC diagnosis, let alone the shock that it wasn't made clear how great a risk we faced.  I wish you all the best in this battle.  Come here when you need to vent. 

I had bilateral masectomy with no reconstruction.  You'll read from everyone that everyone's situation is different, and the likes and dislikes of breasts and length of time fussing about them is different for everyone too.  I knew I wanted to stay out of the hospital and as far away from the medical world as possible, and saying goodbye to both breasts felt very right for me. 

(((((((HUGS)))))))))))

olivieri

Hello 2ndtimearound,

This is a great place and glad you found this site. I was where you are last year and I know how devastated you must be.  Please do not panic it does get better once you have made your decision and have a treatment plan in progress.   

I had HD in 1996 at 38 years old and  I was  diagnosed with BC last year in Sept at 51. I still see my oncologist from the HD  and she  recommended yearly mamo .  A routine mamo in Aug. 09 came back abnormal and then my journey began.  I was so overwhelmed and confused at first and I just wanted to remove both my  breasts.   My oncologist from the HD seems to be of the opinion that my BC may not necessarily  be related to HD , because it was in my outer quadrant of the breast. In addition my  radiation for HD was precautionary and of low dosage.  Both my breast surgeon and oncologist for the BC were of the same opinion.  I therefore agreed to do the lumpectomy first and depending on my pathology I would make my final decision.  My lumpectomy had wide clear margins and my BC was small and very low grade so based on my particular cancer  I decided not to have a BMX for now.   It was  recommended that I do not do the usual  radiation of the entire  breast since I already had radiation in 1997. My oncologist for the HD recommended Brachy Therapy. I was a good candidate for this type of  local radiation and I did this twice a day for 5 days.  In addition I am also taking Arimidex and I had a complete hysterectomy 4 months before my BC diagnosis so I am pretty much estrogen deprived .  

I am from Canada and the standard of care may be  different here, but it is important to remember that not all breast cancers are the same.  The size of the tumor and grade of the tumor, hormone receptors, state of the lymph nodes and so on  give unique identifiers to our cancer. This is really important to know in order to  guide your treatment and make a decision based on your specific pathology. 

Take care

Sylvia

Caroline-H

Hello 2ndtimearound,

I had HD 16 years ago, and am since taking daily thyroid meds like you. Then BC this past year at age 43. I'm very happy to have had a bliateral nipple and skin sparing mastectomy with immediate reconstruction using Alloderm (one step), for which I was a candidate, on July 9. Only certain physicians are up on doing this relatively new one-step procedure. It's less invasive (doesn't use other parts of your body for the reconstruction), needs less surgeries (1) and doctor's visits (4 follow-up?), & looks great which really helps pschologically. I was also able to go from a 36B to a 36C size, which my DH likes. See the following websites for more info, plus there's an Alloderm discussion group on this site. http://www.breastrecon.com/id27.html  http://www.lifecell.com/patients/369/ 

Good luck with your decisions!

Kadyann

Hi all,

I too am so glad to find this site.  I was treated for hodgkins in 1988 (20 yrs old) with only radiation (stage 3a) so it is interesting to me that some in the same time frame also had chemo.  My first bc diagnosis was in 2003 at the age of 36 and second was in august.  The first was primarly dcis with micro invasion so I opted for a masectomy with reconstruction and no further treatment.  All was good for 6.5 years until a found a small lump in the reconstructed breast.  My ps told me that he was almost sure it was fat necrosis, so when I was told it was bc again it hit me like a ton of bricks.  The doctors are not sure if it is a recurrence or a new primary (long complicated story) but I needed to be more aggressive with treatment this time so am taking TCH chemo.  The question I have is how to go on after treatment is done?  I can't help to feel that I am doomed to deal with cancer forever!  It is like i am constantly dodging bullets and one of these times it is going to take me down.  Have any of you been told that you are also at a greater risk for lung cancer?

mimi1964

Kadyann, sorry for everything you've been through and I really understand how you are feeling.  I was cancer free for so long that I never imagined that I would ever get it again.  None of my docs ever told me that I was at increased risk for getting another cancer because of HD.  This was probably because I never had any radiation... apparently I am one of the strange ones, because I only received chemo, 8 rounds to be exact!  Finished that up at 17 after being dx at 16 and was cancer free till I was 45 last year.  I pray to GOD that I never and my family never has to deal with it again.  I know each and everyone of you feel the same way. 

Good luck to all of you on your treatments and bless you.

Renee

Kadyann

thanks for you kind words and thoughts Mimi.  I know that I will get through this but I think that it will take a long time before I trust my body again.  Have 3rd THC treatment tomorrow, fun, fun!

missde3

hi Kadyann - anything in the radiated field is at a higher risk for cancer including lungs, thyroid, skin, esophagus, stomach, etc.  also, your heart is at risk.  my cardiologist said it causes damage in the lining of the arteries.  i get a stress test every 2 years from him.  all of here who have survived hodgkin's are so thrown for a loop with a second cancer dx.  it's like we did our time already - we didn't need it again!  i, too, have a hard time trusting my body!  i have a lot of medical issues that i'm dealing with now and it seems to be a common thing!  we keep plugging away at it and we go on! 

mollyinco

my radiation oncologist told me that my risks for lung cancer are double the normal population due to the mantel rads from HDl, same goes for the thyroid and colon cancer risks, and i am at higher risk for heart problems as others have said on here. i've been taking thyroid meds for years too

i had a aBMX with immediate reconstruction in may with TE's, jsut had the exchange done in early october. i'm glad i chose to go that route and can just spend my time now recovering and healing from the past 7 months. the PS surgeon told me that if this didnt work (which thankfully it did) then i really had no other options for reconstruction due to the rads i also had on my abdomen for HD

mollyinco

i have an appt with my cardiologist today to discuss baseline testing for me, and a game plan from here on out to keep a watch on my cardio health, past radiation can cause a gumming up of the arteries

Squeezie

My name is Kelly and I am new to this forum.  I am 47 years old.  I had HD 3B dx. '81 and tx. with mantle/pelvic rad. and MOPP with no recurrence of disease.  Had cold thyroid nodule with hemithyroidectomy (benign) in 1991.  Several small basal cells treated aver last few years.  Had a normal mammogram first week in Nov. 2010 and found a small pea-sized lump with Left breast pain 1 week later.  I am a nurse practitioner and decided I would watch it for 1 cycle to see it it changed...it did not.  Had the ultrasonographer where I work do an ultrasound to check for cyst and no cysts were identified.  Decided to see surgeon 2 weeks ago, he said it was nothing and really didn't think a biopsy was necessary even though he was aware of my history of radiation.  I told him I would prefer to have it removed so we scheduled an excisional bx. on 1/14/11.  Path report was invasive ductal carcinoma with positive margins.  He was shocked!!  The final path with ER/PR/HER2 receptors is still pending. I have an appt. with my previous medical oncologist tomorrow to see if he remembers anything about the amount of radiation amounts I received since my old rad oncs have since died or retired and my records have been purged and no longer available. I will also talk to him about his recommendations for tx...Lumpectomy w/ rad (if possible) ; Lt. mastectomy: possible bilateral mastectomy???  Just not sure yet but hopefully will know more on Tuesday after talking to both med. onc. and surgeon.  I just know that this is my second rodeo and I don't want to do this a third time.  Once is enough for anyone, twice just sucks, and a third time is just out of the question !!!!!  Any thoughts???  Thanks for listening. 

michellehb

I'm sorry you are going through this Kelly. My story is similar. I am 47, had HD in 77. I was either stage 1 or 2, so didn't have chemo, only rads. I couldn't track down my records, but my rad onc talked to my former onc and they agreed on my probable dosage based on protocol for the time.

MX was only option b/c of the previous rads. Lumpectomy is normally accompanied by rads (otherwise recurrence risk is too great), and they don't recommend re-radiating unless you have more than 4 positive nodes. I opted for bilateral MX, but honestly not sure if I would make that same decison now almost 2-years later. Just make sure you take your time making decisions. It's a rough road for that year of surgeries and treatment, but life does get back to a new normal. Good luck on your appointments.

Squeezie

Thanks so much for your reply...is thee a reason you would recxonsider your decision for a double mastectomy??  That is what I am considering at this time.  I wa hoping to do reconstruction at the same time, but my case was presented at Tumor Board today and they have recommended the mastectomies first and reconstruction later.  They want to make sure everything heals before they consider the reconstruction.  this just sucks...I thought once was enough !!!  Thanks for any insight....

mollyinco

our risk of breast cancer is double the normal population which is why it was recommended to me that i do the BMX. i could have opted for a single and have lots of yearly testing on the other breast but for me it wasnt worth it. it is my understanding that we got our  limit of rads with our hodgkins so its not a real option now UNLESS there are a lot of nodes involved then they would try to find someway to radiate (at least this is what my radiation onc told me) my medical onc wanted me to do the reconstruction later because he feared i might be at higher risk for infection due to past rads but the PS and BS both told me that that really didnt play into the picture, my past rads didnt make me at higher risk for infection. i did the immediate reconstruction and all went well and i'm really grateful i did it that way. i had the biggest surgery when i was feeling the strongest and wasnt tired from the chemo. for me it worked. theres lots to learn and process as you get into not only the BC but the other issues we face due to the rads....but take your time and do what feels best to you

michellehb

I also did immediate reconstruction with tissue expanders. No mention of increased risk of infection. Everything went fairly smooth, except due to prior rads my scar wasn't healing well on my BC side. As a result I had to do the swap to implants before I could get my expansions in, which kind of defeated the purpose of having done the tissue expanders. Still I can go back and increase size now if I wanted, but I was always an A cup. I'm not much in the mood for another surgery, just yet, so I will wait to decide.

I was quoted stats that we reached normal lifetime risk of BC by age 40, and that around 30% risk of getting BC in the other breast (though not enough sample size to say for sure). So it's a matter of how comfortable you are living with the risk. I had a positive node, so I have had to learn how to live with a 20% risk of recurrence regardless (which would be much worse than a new cancer in the other breast). It's not optimal, but over time you do get to a place where you learn to live with it, and it's not as bad as you think. Life goes on, you just have to monitor carefully.

My sister is BRCA1 positive (oddly enough, I'm negative), and she's really taking her time to think this through, and I think that is good. In my case I made the decision when I was in a mental state where I was pretty much willing to throw anything toward the fight. I even participated in a clinical trial which ultimately may not have been in my best interest. Who knows, I ultimately may have made the same decision. I don't spend too much time thinking about it because what is done is done. You make the best decisions you can at the time, and I'm happy with the decision.

My only point is that it's a big alteration to your body for a bit of piece of mind, which you may not get anyway. My new boobs look great for fake (fortunately, they were able to spare both nipples). They are however different than before, and you lose all sensation, so it's a big change. I hoped that made sense, and maybe helped in some way.

Caroline-H

Hi Kelly. I'm 44. I had HL 16 yrs ago, treated with chemo and mantle radiation. Then got breast cancer on the right side diagnosed a year ago. Fortunately I had time to research and found doctors who were comfortable doing a nipple and skin sparing double mastectomy, then immediate reconstruction using Alloderm, and silicone implants. All one surgery (4 hours) and one overnight stay in the hospital. Finished chemo 2.5 months ago. 6 months post surgery things are looking really good, all things considered. I did both sides, to alleviate worry, and get better cosmetic results. Turns out the left side had precancersous lesions, so just as well I got both done at the same time. If you have the time and inclination, I HIGHLY recommend you see if any doctors are using Alloderm to reconstruct breasts, so you don't have to take healthy skin from other parts of your body. In my home town this wasn't presented as an option, and I only found out about it when referred to a larger center (Vancouver BC) where the doctor was onto this new procedure.

michellehb

I also got the Alloderm and skin and nipple-sparing double mastectomy. I got recommendations on the best facility close to where I live (fortunately in Chicago there are many), and this was offered straight up. Agree with Caroline about doing the research so you get the best result. I know others who live in more remote areas that were not offered these options.