Hodgkin's Survivors/Secondary Breast Cancer

I am going for an MRI-guided core needle biopsy tomorrow. I'm quite worried about how painful the procedure might be and of course the results. Because my BS is on holiday soon, they have made me an appointment on 8th August! I have been told to call next Weds lunch time to see if my case has been discussed at the multi-disciplinary team meeting in which case I may be able to be seen then. I do hope so.



Will I be okay to drive home straight after the procedure?

I had an MRI guided biopsy yesterday, after a sonogram needle biopsy. The needle biopsy was probably more painful, but doable. They loaded my breast up with lidocaine, and for the MRI biopsy, gave me even more lidocaine, so I really didn't have a problem with the pain. I'd agree with "uncomfortable." Also, I wasn't prepared to see the blood all over the table when they let me up. I'm not squeamish but it was sobering, I had no idea what was going on. (I guess that means the lidocaine worked.)

I had mantle radiation for Hodgkins in 1977 when I was 17 years old. Have had very good health since, but now, 35 years out of treatment, breast cancer! How can it be? Just had my bilateral mastectomy with expanders last Monday. Looking for good results and to minimize any really long term effects of that ancient history of radiation. Let's talk.

It saddens me to have just had to update the 'My diagnoses' area on here. I went to the breast clinic today to get the results of my biopsy and they weren't good. I think deep down, although I was worried, I thought everything would be okay and I was going to consider drug therapy that I'd been offered previously to reduce my risk of getting BC. Seems it's too late for that. The doctors are surprised since the mammo and ultrasound were clear and there is no palpable mass.



The only recommendation in terms of treatment is a mastectomy. I can't quite believe this is happening to me. I went through four years of treatment for Hodgkin's and now this. I need to have a lymph node biopsy in a couple of weeks and hopefully they will be clear - they were on the MRI. I asked about a prophylactic mastectomy on the other (R) breast and am probably going to have that done too. Although I didn't think I would want to remove something healthy, knowing that it's occurred in one breast will make me forever fearful of getting BC in the other. I made it clear that I would want reconstruction surgery and so have to wait for an appointment to meet the plastic surgeons as I would prefer immediate reconstruction.



Everything is a bit of a blur and I don't think I've accepted it as reality yet. No doubt I will be back to ask lots of questions.



Michelle

It wasn't adding my signature with my diagnosis. Trying again...

Thank you DeborahC. It means a lot.

Hi all, just trying to revive this thread. I have been reading a lot about BC since my diagnosis and have spent a lot of time reading the threads on this board but I know I am part of quite a unique group of women and so a lot of other women's experiences and treatment protocols don't apply to me. I've been trying to find out what is the typical treatment and reecurrence risks for HD survivors since we can't have radiation and perhaps wouldn't be able to have the same chemo as most others (like more Adriamycin?). I guess information on recurrence and prognosis isn't yet available since it is only recently that the high risk we are at has been realised.



I'm worrying now about my reconstruction surgery and how well I will heal with my previously irradiated skin. I am having a DIEP recon and have a CT scan of my abdomen next week to check that the vessels are suitable for transfer. I don't think I can deal with any complications. The whole situation itself is bad enough!



I also keep worrying about the risk of recurrence even after BMX since I of course received radiation beyond the breast to the lymph nodes. What if I get cancer in the chest wall? It's not like I have a 'normal' occurrence of BC so I think it's all so unpredictable.

Hi Michelle, I am also doing the tissue expanders/implants.  The radiated skin seems to be stretching and healing just fine, but I am going to stay on the small side just to be safe.  I was afraid of the longer flap surgeries (and I get blood clots).   I am not doing chemo (low oncotype dx score said that it would not help). 

It is scary to think about more recurrances. I am on a long term survivor listserve and it scares the heck out of me when I read all the problems the HD survivors have.   I assume I'll just stop worrying about it after a few years   I guess I should go see a cardiologist, however.

Mariwyl - I think the MOPP regimen only differs slightly from the ChVPP I initially had - chlorambucil, vinblastine (Oncovin), pracarbazine and prednisolone. As you can see in my signature, I had quite a lot of chemo so am surprised I've not had late effects from that! I keep coming across cobalt radiation but not sure what it is.



DeborahC - what treatment did you have for HD, and how long after did you get BC?



Fighter34 - what treatment did you have for HD?



Glad to hear that I won't necessarily have problems healing. I do remember not having any skin problems at the time I had radiation. They were telling me I'd feel sore and sunburned but I never felt anything! Only thing I am worried about is that the skin on my lower breasts is quite thin.

Michelle-radiation.

Annie-You are on the right path by exploring all of your options. I am just concerned about option number three. Most of us rec'd some pretty powerful radiation so I am more inclined to say I would skip further radiation unless it was absolutely needed. As you know we are not doctors though. You will make the right decision.

Anniet,

I'm also in Boston, and agree with the wonderful doctors we have. I saw Dr.'s at Dana Farber, and with my DCIS diagnosis, they would not radiate again, so my only option from them was a mastecomy.



I went with a unilateral mx, even though I know I'm high risk, for the other breast. I did a TE with a silicone implant. And I've had success. 3 1/2 years so far...because stretching our pre radiated skin can also be a problem. I had the TE in a long time (9 months), extra stretching time. But I have heard from others, where the TE failed.



Keep asking questions like you are!

Kle

This study says that while our risks are higher to get BC and we don't usually get radiation again, the prognosis is similar for anyone else with BC

http://intl-jco.ascopubs.org/content/18/4/765.full

This study (while small) says we do fine with TE's and implants after radiation

http://www.ncbi.nlm.nih.gov/pubmed/11786799

I don't like seeing that 55% ten year survival for Stage 2.  I guess I didn't realize it was that low.

I had stage 2B Hodgkins in 1984 when I was 28.  I had radiation therapy and was cured.  My Dr. warned me that I was at a higher risk for breast cancer so I starting having check ups and mammograms at an early age.  In 2005 I had a mammogram that was clean.  About 6 months later I found a lump in my left breast.  They thought it was small and I was planning on lumpectomy and radiation.  When I saw the surgeon she informed me that I could not have radiation twice and would need a mastectomy.  After a brief meltdown she sent me to see a radiation oncologist to find out if I was eligible for mammosite radiation (brachytherapy).  She and the surgeon agreed I was a candidate.  I had a lumpectomy but the tumor was bigger than they thought, close to 2cm.  I also had 2 positive lymph nodes.  We discussed whether I should still have the mammosite radiation and decided to go ahead with it.  I then had a second surgery and fortunately no more positive lymph nodes.  I had 6 chemo treatments.  3 with 2 drugs, and 3 with 1 drug.  Because of my history, they wanted to try and protect my heart by splitting rather than giving me 3 treatments with all 3 drugs.  I finished treatment at the end of 2006 so I am 5 1/2 years out from treatment and doing well.  I do take Femara and also get breast MRI's or mammograms.  I wish I had gotten a breast MRI before my lumpectomy, they might have seen that the tumor was bigger than it appeared.  I don't know if I would have made different decisions if they had known.  I wear an enhancer in my bra because they had to remove more tissue than they thought.  This way I look even.  I know if it should return, I would need to get a mastectomy.  Doctors had been following a nodule on my thyroid for years.  Finally had to have one lobe of my thyroid removed.  Had microscopic thyroid cancer but did not need additional treatment.  I also got an echocardiogram this summer to make sure my heart is doing ok.  I do try to eat healthy and exercise (although I have been pretty lazy lately).  This is certainly not a club any of us ever wanted to belong to.  I volunteer at a cancer support center and you know what they say; there is always somebody worse off.  Glad to find there are other survivors out there.  Stay strong.

I too was treated for hogkins disease at age 20, thirty five yrs ago, at Stanford Univ Hospital. I had my thyroid removed because of multiple benign tumors in '94 and diagnosed in August of last year with BC in both breasts. I originally had a double masectomy with expanders in December, but had trouble healing because of damaged skin from previous radiation, got severe necrosis and had a second surgery in February, continued with several minor surgeries to clean up infected skin until April when I ended up having a double latissimus dorsi flap with reconstruction. Very tough surgery, because I didn't have any healthy skin left by then they had to remove the whole lat muscle to put over my chest on each side and I had large skin flaps, 10 x 4 inch on both sides, eight drains but the good news is my skin healed nicely and I just had my last fill. My implant exchange surgery will be in December.. I highly recommend physical therapy if you end up on this route. I still have a lot of pain, muscle spasms and nerve pain but it gets better with time and I look forward to a complete recovery.