BC Dx and Hodgkin's Disease Radiation Treatment

michellej1980

Hi Traii! It's weird as I was just thinking about you earlier today and wondered where you'd been as you've not been on the November chemo thread for a while. 

Hi to you too Jenn! I've not been on the Sept surgery thread for a while. Must pop in and see how everyone is doing.

Anyway, I had DIEP flap recon and surgery was about 8-9 hours. i spent a week in hospital feeling very uncomfortable but was surprised at how quickly I bounced back from then on. I was driving after 3 weeks and able to get about even though slightly stooped over. apart from the lack of nipples/areolas my breasts look and feel completely natural. It's amazing. I will probably see the PS for follow-up once I've finished chemo but I don't think I will bother with any nipple recon. I'm just happy I got my lady lumps!

I woud definitely get some more opinions. If you don't need expanders and therefore no need to stretch the radiated skin, why only 50% of it working? 

Traii

Thanks for your stories Jenn and Michelle.

Tram recon didn't sound that bad of a healing time for you Jenn, I'd be happy too if I was back on track within 4 weeks.....I know i have the support of my parents looking after my son for me whilst I was in hospital and healing but it will be so hard, was hard enough for a few days when I had the lumpectomy let alone BMX ! will see what happens I guess.

I'm more heading towards implants at this stage as I know I have the tummy one as back up if the implants weren't to work out for me.

Valid point Michelle, I thought the TE were used to stretch the skin so that you get bigger boobies....thats why I told the surgeon that I didnt' want Expanders because I didn't want to stretch anything, I want a reduction if I'm going to do this....she said that she hasn't done one with no TE's but she would put the implant in and put some tissue or something folded over it to hold ? I'm new to all this so have no idea what she was on about, all I want is implants so I can have my girls back once they were gone.

She did mention to me that she was a little biased re the Tram or DIEP one because she likes using our own tissue which yes, makes sense as its not a 'foreign object' , it would be better off she said because if i loose weight or gain weight the boobies would do the same!

I'm happy to loose weight and keep my 'girls' the way they are....

I am going to speak with my BS that actually did my lumpectomy to see if she can refer me to her other hospitals Plastic Surgeon so that I can get that 2nd Opinion about it and to see if perhaps they have had a patient that had HD radiated chest and did the same procedure......its all a bit rushy as they want to perform the BMX no later than 6 weeks after chemo finishes which is on the 12th March ( happy birthday to me - on my b'day) !!

Traii

Oh Michelle, I do look at the november thread to see how you are travelling because I saw that you weren't having a good of a time with steriods etc, I get on the Tax thread to offer my support to the ladies going through treatment and am now on the CMF thread too.

How many TX do you have left ?

ablydec

Just noticed this thread.   I had Hodgkins at age 28, 20 years ago (stage 2A), but did not get radiation (at the time, was getting pressure from prior patients to go to Stanford, CA for radiation.  I went for a second opinion at Sloan-Kettering, where they said this was a current research question (chemo vs. rad vs. both). I did just chemo, ABVD (based on a blessing from the Lubavitcher Rebbe, but that's another story), so when I saw the research about elevated risk in post-radiation Hodgkins patients, I felt very fortunate in my choice.  

But as you can see, I'm here on this thread now, so clearly, I ended up getting BC anyway.  Go figure.

Traii

Oh wow ablydec....sorry you are here on this journey. Im shocked by your dx despite no rads..





Good luvk with your treatment...i notice you have just started !



Hugs

Traii

ablydec

 Thanks for the encouragement.  Yes, I just got started with chemo.  So far so good, I had very little in the side effect department, and have been working the whole time.

As for the surprise that I got BC, I have a family history.  My mother was diagnosed at the same age I am now.  I guess I wasn't shocked.   And I got through the Hodgkins pretty unscathed, so I'm hoping I can do the same thing this time.

srstheo

Wow. Just found this site. I had Hodgkin's disease when I was 16 back in 1984. I had my spleen & thyroid removed followed by 6 weeks of radiation therapy 5 days a week on my upper chest, and then another 6 weeks on my abdomen. In 1984, at age 34, I was diagnosed with breast cancer (5 cm tumor in my left breast). They thought the breast cancer had metastasized to my spine. To quote the doctor from Brigham & Women's Hospital in Boston, "There is no point in removing the tumor. The horse is already out of the gate." I'm not kidding - that's a direct quote. So I was told I was terminal and removing the tumor was pointless. I was treated with weekly chemotherapy treatments for a year and a half to keep the tumor at bay. Then finally a local radiation specialist in my home town finally decided to biopsy the "cancer" in my spine. Turns out it wasn't cancer, just radiation damage from the Hodgkin's disease, plus a lesion between my T4 & T5 vertebrae. I immediately stopped the chemotherapy treatments & chose to have a bilateral mastectomy with reconstructive surgery. Then just today, at almost age 46, I was diagnosed with skin cancer. I wish I had known about all these "links" to Hodgkin's disease. They didn't tell me about any of these risks back when I was sixteen! Anyway, I'm hoping for the best with the skin cancer. Thanks for listening! :-)

Traii

Hi srstheo,

Sorry to hear that of your docs mouth...that is terrible. I cant imagine what I would have wanted to say to that doc for misdiagnosis!!



Sorry to hear you now have to deal with skin cancer. If you dont mind me asking how did you find the cancer there?



I just cant believe what we all went through with our HD to survive is putting us through more challenges in life. Its horrible !

michellej1980

Hey ladies,

I have created a Facebook group for us HD survivors who are at risk of or already have developed BC. I want to try and connect us all more easily as I feel it can be quite isolating being part of this 'special' group. It might also help those not yet diagnosed make decisions regarding avoiding this beast altogether! 

The link is www.facebook.com/groups/119043... and I will need to approve your membership. It's a closed group so nobody but members can see anything we post. please join and post your story! 

Michelle

michellej1980

Hey srstheo. I can't believe what that doctor said! Thank goodness it wasn't cancer but terrible you had to go though the chemo for nothing. Sorry about the skin cancer. I assume it is in an area where you had radiation??

srstheo

Hi Traii -

Thanks for your reply.

The skin cancer just started as a wound on the side of my face about a year ago. It was a small open sore that just wouldn't heal. When I went to the doctor last week for my yearly GYN exam, she asked about it. She didn't like the loooks of it so she referred me to dermatology. They did a biopsy and it came back cancerous. I'm having it removed using MOHS surgey. Going back to dermatology after the surgery for a full head to toe full body check.

I just want to get the word out there that pediatric Hodgkins patients treated with radiation therapy have a much higher risk of skin cacner so be careful in the sun ladies!

Thanks!

srstheo

Michelle -

No, the slin cancer is on my face, so not really near the areas of my radiation therpay. I really wont to make sure everyone knows how much higher the risk is for develpong skin cancer after radiation therapy. I didn't know. So maybe we can educate others. Thanks so much.

Traii

Thanks for your info srstheo. Good luck with the surgery.

Its an eye opener for everyone to look out for signs. I would never have thought taking much noticed to a wound that wasn't healing well enough to be that.......

Take care

Pomag

Hello all- so glad to have found this group! I was treated for stage IVB hodgkins at age 15 with high dose chemo and radiation and have been on the roller coaster of breast masses and biopsies since. Too many to remember honestly, but I would probably say 6- needle, core, and surgical open. So far all have been benign tumors/fibroadenomas but I am going for a great MRI next week and am in knots about it. I am 18 years out of treatment so I am fully in the window. I have two young kiddos and all of this is just so surreal - aside from a nearly non functioning thyroid, some joint issues and "battle scars" I have been otherwise healthy all this time. Anyway, I have felt so encouraged reading this thread and know that if and perhaps when the dx comes it is manageable. Oh, and I have been wondering about prophylactic mastectomy- anyone consider this ?

Patricia

kcmanis

Hi,  It took me a while to not only look for this group but reply.  I had HD in 1992, Stage IIB, MOPP, ABVD and radiation.  I hit my 20 year cured anniversary and was diagnosed with Breast Cancer in November 2012.  I was 16 at the time of my HD and my mother was the one talking with the doctors and listening to the long term side effects.  I found the lump in my breast and really had no idea i really had a high risk of BC.  I underwent a double mastectomy in December and this Thursday will be having my 7th CMF treatment.  One more after that.  I feel these last few months I have been more emtional.  After the Mastecomy i was in great spirits, felt on top of the world.  Going through chemo again, has me deflated.  Its not as tough of chemo as when i was younger, but just doing it sucks..  I can cry at the drop of a hat lately.  I also have not really talked to many women with or who had BC and when I do i get very emotional.  I put in a request to join that FB page.

Thank you for letting me share.

DeborahC

Hi kcmanis,  Welcome to the group.  It is so hard to go through this again.  I was also 1992 HD and 2012 BC.    I have never had chemo, so I don't know what that is like - I hope your last two treatments go well.  I was just at an ACS cancer walk this weekend.  I stopped by the survivor's tent and a man asked me about my cancer and I told him I had two.  He told me he had three and had run out of treatment options.  I then noticed he was pretty young and walking with a cane.  I know I am in pretty good shape compared to many others.

missde3

I haven't been on this site for a while - glad to see so much support for each other!

  Just a side note:  i was told after being dx with HL that my risk for skin cancer was higher regardless of treatments.  It's the HL itself.  There's a connection somehow.

I have a question for everyone:  I was DX with pneumonia last March, relapsed and it went into other lung.  Suffered with pleurisy and fevers for almost 3 months.  After 3 antibiotics (they were afraid to put me in the hospital because of no spleen), 4 different cough medicines, and having fluid on the left lung, we thought I was ok.  My CT scan in Aug showed fluid, Oct showed scarring and the fluid was mostly gone.  The pul doc gave me an inhaler to use in Jan because of the cough - continued with the codeine cough medicine.  I still never felt right.  I kept getting out of breath and feeling tired.  Just had my follow-up CT scan and the lung now has 'moderate' fluid after it was almost gone!  They are perplexed.  I'm getting it drained on Monday (scared) and they will test it.  Onc wants a PET scan now.  So - has anyone had probs like this?  Can it be post-rad damage???

Ippuni

missde3:

How are you doing?  I just spent 9 days in the hospital for constrictive effusive pericarditis.  I started out about a month ago with a Dx of double pneumonia.  Was on levaquin for 10days along with steriods.  Felt better while on steriods, but as soon as I was off them again, I had a hard time breathing.  In the end, I was running a low-grade fever and my pcp told me to go asap to the er.  At the er I had a chest ct which show fliud around my heart (pericardial effusion) and between my chest wall and lungs (pleural effusion).  Both were tapped and there was no sign of malignancy.  At this point, the docs at the hospital are thinking it is radiation induced from my HD rads.  I'm on colchicine and ibuprofen.  I'm feeling a little better now that I've been home for a couple of days but I'm still wiped of energy and it doesn't take much of anything to make me short of breath.  I have a recheck with my cardiologist next Thurs.  Have they ruled out pericarditis in your case?  Apparently it is not easy to diagnose.  I hope you are doing better!

Has anybody out there dealt with pericarditis as a late SE of rads?

GaleM

Hi Michelle,



Thanks for starting the FB Group--I just applied to join. I'm at the beginning of my BC journey. I was treated for stage 3a HD in 1978, when I was 16, with MOPP and radiation. I had a recurrence of HD in 1982, which was treated with MOPP and ABVD.



I've been remarkably problem free until this year, when my platelets started to rise due to the splenectomy in 1978. Then I had a problematic mammogram, which led to a problematic ultrasound, and then to today's biopsy. The radiologist told us that she's concerned by the look of the mass and we should prepare ourselves for BC. The mass is 1 cm, mammo showed the other breast clear (although that could change once I have an MRI, of course).



After reading this message board and so many other articles, my husband and I have realized that a bilateral mastectomy is probably our best option. I, like many of you, had no idea I was at such a greater risk of BC because of the radiation I had so many years ago.



Your stories are so inspiring and helpful. I'm terrified of the chemo--I know the side effects aren't as harsh as they were for HD 30 years ago, but I'm so traumatized from those two bouts of chemo that I'm having trouble with the possibility of having to go through it again.