Hodgkin's Survivors/Secondary Breast Cancer

SurfaGrl · February 2012

Hi, Iʻm new to this thread as I am also a 23 year survivor of HL. I had invasive ductal carcinoma on right breast. I just had a DIEP reconstruction in New Orleans and doing well. But, it wasnʻt recommended to me to do a bilateral but after reading everyoneʻs posts, Iʻm thinking of going back to do a prophylactic on the left side. Argghh. So many surgeries.

Anyone on arimadex? My doc wants me to start but Iʻve been reading the negative effects of bone loss.

Iʻm trying to log into ACOR. Maybe Iʻm doing something wrong. Will try again.

lifelover · February 2012

Welcome Sammyc and SurfaGrl,

I'm sorry we have to be here but it's a great place to learn and for support.

SurfaGrl, I'm on tamoxifen because I was pre-menopausal before breast cancer. There are lots of threads on Armidex on this forum though so search for some great information.

I'm not pleased that I have to take tamoxifen and deal with the side effects but I feel I have no choice given my history and the Grade of my IDC. I'm having less noticeable side effects 5 months after starting tami though.

Today I'm having a 24hour tape fitted to record my heart rate as in the past few years I've had a rapid heart beat. Can't ever get it below 90 and mostly it's 100 to 120. Hopefully it's nothing serious but it will be good to rule anything out.

Oh yeah, SurfaGrl, just my experience but I'm glad I had the prophylactic on my left side. My breasts are evenly matched now. They actually look better than they did prior to BMX. One side effect to consider though is numbness. From what my PS says, it is rare for feeling in the reconstructed breast to return. Although this bothered me at first I now accept it. I did have the TUG reconstruction though so perhaps the DIEP is different. Ask your surgeon.

debshipshape · March 2012

Hello,

I had Hodgkins Disease Stage IIIA in 1981 at the age of 26. I was treated with total nodular radiation, 4400 rads to the mantle. I just was diagnosed with Breast Cancer in my right breast. I had a core needle biopsy which seems to indicate Stage 1 ER+Pr+Her2-. I spoke with Stanford Radiology (where I was treated in 1981) and my Breast Surgeon who both seem to believe that it may be possible to have a lumpectomy and radiation after 30 years. I am scheduled to talk with the radiation oncology department before the lumpectomy to see if this is possible. I have been debating about a double mastectomy because of the risks. After my visit with my Surgeon I thought well maybe we could try the less is more approach and see what that looks like. At the very least it would give me a clearer diagnosis because more tissue would be removed in the lumpectomy. Then I could still opt for a mastectomy.

Any feedback would be greatly appreciated.

Thanks in advance,

Deb

lifelover · March 2012

Hi Deb,

It's such a difficult decision whether to have the lumpectomy or mastectomy. My rads were in 1994 and my BC was diagnosed in 2011, 17 years later.

I was given the choices of lumpectomy or single (of right breast) or double mastectomy. My decision was based on the fact that the lump had been there the year previously and despite a fine needle biopsy wasn't diagnosed. It was also based on the fact that micropapillary cells were found, which are considered more aggressive. During my ultrasound it was obvious that something was also going on in the lymph nodes under my arm. I also had a few lumps in my left breast and although it was felt these were only fibroadenomas I felt more comfortable having my left breast taken as well even if it would be prophylactic, which it was.

In part, I also based my decision on having an immediate reconstruction using my own tissue so that there would be some symmetry between both breasts.

I was 49 at the time of diagnosis and in a new relationship so I felt BMX was my best option. Saying that, I do not have any feeling in my newly reconstructed breasts. That is definately something to consider.

I'm okay with my decision but it wouldn't be everyone's choice.

Debs, I'm sorry you are here with us but there is a lot of great information on this site and in this forum to help you make the right decision for you.

Best wishes for a clear head!

debshipshape · March 2012

Hi Lifelover,

Thanks for your speedy reply! It is amazing to send my info out in the ether and have someone like you reach back.

I am trying to look at the lumpectomy as a starting point to gather more information. I need more of a definitive diagnosis than the one I have from the core needle biopsy. I have been around this block before where they say it looks small, it looks early, only to be told later something else.

What's interesting is talking to other BC women (w/o a Hodgkins history) who hate the idea of radiation. Radiation therapy gave me 30 years of survival so I have a different take.

I do feel that we are a special group who need each other for information. The Doctors are somewhat stumped by us.

Thanks again for the hug across the ocean!! xoxxo Deb

kle · March 2012

HI, another Hodgkin's survivor here, when I was diagnosed with BC in 2008, my Doctors at the Dana Farber in Boston, would not let me go lumpectomy/radiation, route because they said I could not be radiated again successfully a 2nd time . They recommended a MX, which I went with.. I had my radiation about 20 years prior.

Just an FYI, I've had some other side effects last year, from the original radiation 20 years ago with my Thyroid and heart ( radiation induced coronary artery disease). Keep up your follow up with all your doctors.... and be sure to have a cardiologist on your team!

Good luck

kle.

debshipshape · March 2012

Hi Kle,

Thanks for your reply and the good advice!

I also had coronary issues. I am being closely watched on that end as well. I was treated at Stanford in 1981. They did a heart study about 15 years ago which I participated in. I was diagnosed with Atrial Fibrillation 3 years ago which they think it unrelated but who knows. I also have been on thyroid meds for the last 28 years. If it's not one thing it's another!! But we're here!!

Deb

kle · March 2012

That's for sure we get a little bit of everything!! When I had my thyroid out last July, I ended up having a mini heart attack after the surgery while in the hospital. ( I think my stiff vocal chord from the radiation let some liquid get into my lungs...) Then they tried to find out if I had a blockage, which I did, the location of the blockage was at the "V" of the artery so you can't stent it .., so they sent me upstairs for emergency double by pass surgery! All is well now 6 months later! So you know all about the heart issue side of this!

kle

Fighter_34 · March 2012

Hi Ladies:

I added a Cardio Dr. to the mix and had an EKG done and it was fine. So in about a month we are going to have the stress test done. never knew that I needed to follow up with a Cardio Dr. I thank everyone here.

Wishing a peaceful journey ahead for us all.

kle · March 2012

Fighter that is great, since I lived through the heart side effects, I know how this can be a life or death addition to your health team!

kle

sammyc · March 2012

Hi girls, it's been a tough 5 weeks. Surgery went OK. Results were both lumps IDC Grade 3 (one multi-focal). Only 1/7 micro lymph which was good. Neg for both hormone. Started chemo, lots side effects, think my body remembered the ABVD??? Major bummer yesterday, Picc developed a clot and had to come out, husband now giving me Clexane jabs to the belly for the next 3 months. On the positive, I got my silicone prosthesis yesterday and named her "Polly" she's awesome.

I've got lots of heart issues from past chemo so reading other posts, never underestimate to go hand in hand through second treatment with a cardiologist in tow. Also, I'm pretty sure I'll be opting for the removal of righty when I go the recon.

Take care all, S x

mariwyl · March 2012

I just regsitered here today as a newly diagnosed BC patient. Just saw the surgeon, and have scheduled an XRT/onc and plastics appt for next week, too. My last week has been Hell emotionally. I've had every scenario I could imagine.

I am concerned with treatment, as HL adds a twist to things. I am a 37+ year survivor of HL, diagnosed in 1975, treated with mantle radiation with cobalt, chemo (the old MOPP), and did have a splenectomy. Aside from an early menopause and hypothyroidism, I've been pretty healthy and lucky.

Now, I, too, am faced with the special considerations for BC treatment for a HL survivor.

Has anyone with HL had lumpectomy and repeat XRT? I am seeing mostly MX as the standard recommendations. I'd even consider SSM. If I do have a MX, I will go bilateral. Either choice scares me. The XRT brings a host of risks for myelodysplastic disorders, and a bilateral MX to include the primary irradiated area (left breast) may have healing issues from damaged tissue.

Thanks for any feedback!

MA

lifelover · March 2012

Hi MA,

Sorry you are here with us but keep reading as there is a lot of good information here.

You may want to check out the long-term survivors forum on ACOR's website. It is full of recommendations for those of us who have had our first dose of cancer treatment in 70's, 80's, 90's. If you use this link: www.listserv.acor.org you can then access the specific forum which is: LT-SURV.

BMX was recommendation to me because of prior radiation to my mantle. My stomach was also radiated so the reconstruction breast material could only come from my bum or thighs. My breasts were reconstructed using my thigh tissue including the gracilis muscle.

I was also offered a lumpectomy but I read so much information on Hodgkins survivors who had BC, then lumpectomy and then another lump was found a year or so later - I thought I would just get it over with and have both removed. I did have some lumps in my other unbiopsied breast that needed to be looked at and they all turned out to be benign. So they considered my left MX to be prophylatic. I'm happy their gone as I don't worry so much now.

I hope you come to the decision that is right for you. Best wishes to you for peace of mind in making your choices.

mariwyl · March 2012

Thanks for the welcome and info, Lifelover. I have a feeling I am going to go for the dbl MX. Like you, I don't want to worry more than I already do. Did your reconstruction take place at the same time of the MX? The surgeon told me it was a 10-12 hour sx!!!!! I am NOT going to be intubated that long!! LOL I may do impants, which is a much shorter surgery, albeit 2x.

How long is the recovery? And how did your incisions heal from the irradiated tissue? I was also told that previous radiation poses special complications in healing. Wonderful. I'm a mess. How do you all cope? Wish I could go on a 6 month bender! LOL Thanks again!

sammyc · April 2012

Hi gals, it's 7am here, about to head in for dose 2 & new Picc. Saw cardiologist & surgeon this week, all happy. Surgeon aiming for new boobs for Christmas! Has anyone done the tissue expander & implants? I'm leaning this way as I'm a big busted gal & want to end up with 2 perkys at the end of this ;oP Sammy xx

kle · April 2012

HI Sammy, I'm the one that heart issues from the HD, so when I see someone went to the cardiologist, that is good! I had a single MX with tissue expander and silicone implant. My radiation was 20 years prior, and the PS did take an extra long time with the expanders in, for extra stretching. I had them in 9 months! So it was not quite immediate reconstruction! It is almost 3 years, and I've had no issues!

kle

Lisette123 · April 2012

Hi everyone, I am also a HL survivor from 1991, had mantle radiation, chemo and splenectomy. Diagnosed this past December with ILC of the left breast. It took me a few months to come to terms with the fact that a BMX was my best option, I was absolutely horrified and could not speak with out bursting into tears every 2 minutes. I took a long time researching and deciding on type of reconstruction I wanted, finally went with a NSBMX with implants as I was not a candidate for any type of flap surgery. I too was worried about skin healing etc but had found other women who had gone this route with the same background and all went well and they were happy, they even went direct to implant. I had my surgery a week ago and feeling good at this point. My PS took expanders into the operating room, but everything went well and the skin looked healthy so he was able to do the direct to implant route.

Please feel free to message me with any questions.

Sammy where are you from in Australia? I grew up in Perth and moved to Canada about 14 years ago, I really miss the Aussie lifestyle!

DeborahC · April 2012

HI everyone, I had Stage 2 HD back in 1992 and had laparotomy/splenectomy and extended field radiation (upper abdomen up to my ears). I was diagnosed with BC in left breast in Feb 2012 (2 cm lump). They recommended single mastectomy and said double was personal preference. As MRI showed some suspicious areas in right breast and for peace of mind, I chose double mastectomy. I chose TE's because I thought the surgery would be shorter and not require any more skin (after previous abdominal surgeries wasn't sure I would recover well). I had my surgery 2 1/2 weeks ago. I am pretty good during the day, but still having trouble sleeping. It has been more painful than I expected - these expanders are tough. I am trying to wean off the pain pills. The skin looks like it is healing nicely, however. Pathology was pretty good - only 1 tumor (just over 2cm) and no lymph node involvement. They may start expansion this week depending on how I am feeling. I am anxiously awaiting my oncodx score.

debshipshape · April 2012

Hi Ladies,

I have been interested in all your journeys. I had a lumpectomy last Thursday with a possibility to do brachytherapy starting next Monday. I am anxiously awaiting the pathology report on Wednesday. The decision to go forward with bracy will be dependent on the size and type of cells present. I am scared about not doing the mastectomy but I wanted to see what would be possible before making that decision.

I will keep you posted on my week ahead.

Thanks,

Deb

sammyc · April 2012

Thanks for the positive on the expanders kle. My surgeon didn't give me option to go straight to recon or expanders as I had 2 tumors & wasn't sure about rads.

Who doesn't remember that lovely little op called 'splenectomy'? Step away from my tummy!

I hope you keep getting stronger Lisette! I'm in Adelaide, wine country (wish I could chugg a few right now). See ur in BC, remember my 25th birthday @ the Empress! It's supposed to be my 40th next month but methinks I'll be 39 again this year & go for broke in 2013!

Good luck with the bracy Deb, am interested in how this goes for you.

Lifelover thanks for starting this, it's good to b informed.

Sammy

lifelover · April 2012

Hi Mariwyl,

Sorry about the delayed response but I've been away on a 2-week holiday - my first since my diagnosis. It was wonderful

I had my reconstruction at the same time as my BMX. They would not take any tissue from previously radiated skin because I had such a high dose back in 1994.

My reconstruction material came from my inner thighs and gracilis muscle. I did not heal quickly either in my breast area or in my thighs. However, one year post-op my scars look so much better. My breasts look good and friends tell me they wish their's looked like mine.

I was in surgery about 16-18 hours. I spend some of this time in recovery and had to return to the operating theatre because of a hematoma in one of my thighs. I did well otherwise.

My recovery was a long process. I had a lot of infections in my thighs and recurrent swelling (seromas). I did not get any breast infections. I started chemo six weeks post-BMX and reconstruction. Post-chemo, September 2011, I was still having problems with swelling and infection in my thighs. These problems have resolved now and I am happy with what I see in the mirror.

I wish you well and a smooth journey.

ColdenMom · April 2012

Hello... I am as well a Hodgkin's Disease Survivor. I was diagnosed Stage IIB while pregnant with my second child December 17, 2002. I underwent Chemo (ABVD) and Radiation and beat it (and had a beautiful healthy baby girl)...I recall clearly my Doctor saying that my chances for BC have increased having received mantle radiation. I started going for regular mammograms when I turned 30. I am 34 now, in June 2011 I went for my regular mamo and they found a 3mm unspecified tumor in my left breast - I was told it was too small to biopsy so they wanted me to return in 6 months for a follow-up ultrasound. I returned on 12/2 where a second tumor was found, same side. I was diagnosed on 12/6 with IDC. I had a bilateral mastectomy on 1/23/12, started chemo on 2/23/12 and have finished my 3/4 cycles. My last one being April 26. The side effects of TC have been manageable but not favorable. I recall ABVD being extremely difficult and TC does not feel as bad. I am also in the reconstruction phase following my surgery. I have had 5 fills (I have tissue expanders) and will be receiving my last fill next week. Then I'll have about a 4 month wait for the exchange surgery. I'm doing well over all... I have bad days and good.

I saw some of you posting on issues with your heart and thyroid. My MO did say the 'A' in ABVD causes heart issues as well as the radiation, I haven't been seen by a cardiologist but am considering it just for a peace of mind. As for the thyroid, mine burnt out a year after my completion of radiation. I've been on synthroid since.

I wish you all well and I am sending on positive vibes! It really stinks to have to go through cancer treatments again. I'm glad we have these boards to support each other along the way!

((hugs))

Kelly

lifelover · April 2012

Hi Kelly,

Thanks for posting your experiences. And as for the positive vibes - keep them coming. I find that keeping a positive attitude helps me fight back in a non-stessful way.

I see my cardiologist tomorrow and although my resting heart rate is quite high I hope to be told that there isn't anything to worry about. It's important to get checked out. I want to get the okay to do aerobics a few times a week.

Fighter_34 · April 2012

Just dropping in to let you ladies know everything is moving along fine. Reconstruction is totally complete. I feel good and my activity level is up again. Are there any reports of long term survivors after being Dx w/ BC related to Hodgkin's.

lifelover · April 2012

Hey Figher and Congratulations!

On the ACOR website there is a forum for cancer patients with late effects from treatment. I've found some very good information there. I feel more informed now so that I can monitor myself and see a cardiologist or endocrinologist when I need to. Please give the a try.

The forum for late effects in long-term survivors is entitled "LT-SURV".

I hope you continue to do well Fighter!

Lizzie66 · April 2012

Hi there all

I couldn't believe it when I found this thread on this wonderful web-site. I was diagnosed with Non- Hodgkins Lymphoma in 1992 and I had six rounds of CHOP, and then 4 weeks of radiation. I was told there was a higher risk of breast cancer from the radiation, but thought (naively),surely I couldn't be so unlucky to have two types of cancer!!! As I am a worrier I have been getting mammograms since I was about 32, I am now 45.

In January of last year I was diagnosed with triple negative BC. I had I full mastectomy plus a reconstruction done with an expander implant. In hindsight I think I should have had a double mastectomy, but the thought of having more surgery now fills me with dread, the thought of a new breast cancer also does the same thing!

My big worry now, as I am sure it is with all you ladies is secondary BC, I am constantly worried. It is great to have such a fantastic support group like this, that you can meet other people in the same situation.

Regards

Lizzie

Still_Snarky · April 2012

Hi, another Hodgkins survivor here...I don't have breast cancer but have decided at 30, done having kids, to go forward with a prophylactic bilateral mastectomy with expanders. My surgery will be at Stanford (where I was treated in 1999) on May 8th! I'm excited and relieved!

lifelover · April 2012

Welcome Lizzie and Still Narky! But sorry you have to be here.

It's a personal decision to have a bilateral MX whether prophylactic or not. I couldn't advise either of you. Consider your options. There are so many today. There is a lot of research but not enough on Hodgkin's survivors. I read about my chances of getting in in the left breast after having a BC diagnosis in my right and decided to go ahead with having both done as I was worried about some fibroadenomas in my left breast

Please post any new research you are aware of here if you run into any! There is constantly new information on this subject.

Best wishes to you both.

mariwyl · April 2012

I have decided to have a BMX with expanders. I saw the breast surgeon for f/u today, and they will be scheduling my sx soon. I could not tolerate the thought of a flap reconstruction with the lengthy surgery and recovery of an additional surgical site. I'm actually glad for the BMX, because I am very large breasted and will have smaller, perkier breasts that I can actually shop for cute bras in Victoria's Secret!!! LOL I dread any surgery, though. I'm so neurotic about my health since my HD dx in '75.

To SammyC, I sure do remember splenectomy! It was awful and, of course, left me with some issues regarding immunity, thrombocytosis, etc. They don't routinely remove the spleen anymore for HD.

DeborahC · April 2012

Wow mariwyl - a 1975 HD survivor! I also went the BMX and expander route for similar reasons. That was almost a month ago. I had my first fill today that was delightfully easy. I get to skip chemo (11 oncodx score) and will soon start Tamoxifen. Every step makes me nervous and I am now dreading the swap surgery. I am back at the same cancer center and still hate walking back into that place.

Hodgkin's Survivors/Secondary Breast Cancer

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