Hodgkin's Survivors/Secondary Breast Cancer

lifelover

How are you Ladies? Any ladies we haven't heard from who are new to this board?



I'm quite frightened at the moment and trying not to drive myself crazy. I've been having high fevers the past couple of weeks and my doctors couldn't find the source of infection. They did a chest x-ray and found a shadow in my chest. I'm now waiting for a CT scan. To scare me worse, I've also been having night sweats, heaviness in my chest and dry coughs. It reminds me of my HL but I hate to think I have lymphoma again. Docs are being positive with me and saying wel, it could just be a deep chest infection. I hope so to but I'm so worried.



Have any of you had lymphoma following BC treatment?

MegM

I just got a PM from Mimi DPL who is another one of us unfortunate girls... I told her about this link, hope she gets a chance to drop in.  Sorry to hear of your current worries Lifelover... hope all is OK.  I had a scare a week after I had a c-section with my last child...(5 years ago)  about a week after I had her I started noticing I couldn't breathe well, they found I had pleural effusions... luckily at the time I had no clue that that is a sign of metastatic disease and couldn't figure out why everyone was looking so concerned... I spent a bout a week in the hospital and had a ton of fluid tapped off both sides that came back benign... still don't know why it happenned, just so thankful it was nothing.  Hope yours is just a chest infection  I just had my exchange surgery on the 21st... so happy with out tissue expanders, now on to nipples, but for some reason I am extremely queasy about the whole thing... even the tattoo idea is freaking me out.

kle

Hi all, I just wanted to mention my recent experience to those HD survivors. Something everyone should follow up on.



The side effects of my radiation 22 years ago seem to keep on coming. July of this year I had my thyroid out, although it was not cancerous I had many growths, due to previous radiation. During that hospital stay I had a complication with my heart ( a mini heart attack), that brought to light I had a heart issue.



I was found to have radiation induced coronary heart disease. The radiation from years ago had caused a 90 percent blockage to the heart. The location of the blockage was in a spot that required I have open heart by pass surgery. I'm two months from that surgery and healing well.



My message to HD survivors is to be sure you are seeing a cardiologist, and your heart is monitored. I,ve been followed closely since the HD, by oncologist and primary care drs and no one suspected I had such damage to the heart .

. I don't want to scare anyone with my story, but knowledge is power, and we have to always stay one step ahead of this disease.

lifelover

Thanks MegM!  I'm so hoping it's something like pleural effusions.  CT scan is 14 November so then I'll find out more.  I'm staying positive.

I'm sorry you have been through so much kle.  It's scary wondering what damage could have been done.  My heart scans all come back quite good.  But I think they never really know.  I do have a high pulse (100-120) but otherwise all seems okay with my heart.  My doctors say I shouldn't worry.

kle

Lifelover, I just read up , and see your post that you are having some issues. Hopefully the upcoming CT scan, will answer all your questions. Hopefully it is an infection or something already on it's way out of your body.

Have you had night sweats before from the tamoxifen? I'm going thru a bad bout of them this week too.

Kle

lifelover

Thanks Kle, I did start the tamoxifen about a week before the fevers started and the night sweats.  Its hard to separate what might be coming from the tamoxifen.  But I also take Effexor which helps with sweating during the day when I'm flushing.  I never had night sweats before.  Certainly not every night like this.  I will just be so relieved when the results of my CT scan are in.  I so do not want to have anymore chemo.  I know other Ladies here have had to have more though so I'm trying to be strong.

Fighter_34

Wow Heart Problems next....can I get a break! Thanks I will be checking into this.

kle

Fighter, I know it is crazy, google Hodgkin's and heart attack, they have done some studies, and there seems to be a bit of info on this, on line. Definitely worth a check.

Kle

Fighter_34

I very open ladies if you ever have any questions please ask you can PM or post here....

Take care!! 

Eli1642

Hi there fellow hodgkin's survivors! I have a question for you... A prophylactic mastectomy was recommended to me recently due to my elevated bc risk after having the radiation treatment for hodgkin's (had the radiation approx 11 years ago) I have had yearly Mamo, MRI, sono yearly for the past 7 years with no notable change but very dense breast tissue is making it difficult to see a lot. I don't have a family history of bc on my mother's side and my paternal grandmother had bc in her 70's but lived to be 97 - so I don't think that counts. The dr seemed to think the proactive route is a smart option for me. I am curious to know if there is anyone out there in the same boat... I have been through the months of chemo/radiation for hodgkin's and now with two small children feel terrified at the prospect of getting breast cancer. From what I have read a mastectomy seems like a tremendously difficult thing to go through and the more I read about reconstruction and it's many risks I am fearful. The surgeon is recommending reconstruction with tissue expanders and implants. Anyone have experience? I am so anxious and confused. Thank you.

CaliMom425

Hi Eli1642, I had Hodgkins 9 years ago - positive nodes in neck and chest - treated with surgery and radiation.  At my last Ob-gyn visit in July, my doc told me about new studies showing that Hodgkins survivors are at an increased risk of BC and recommended we talk about prophylactic mastectomies.  I laughed and told him "NO, I do not want to discuss that!" Three months later I found a lump in my left breast. Stage 2, Invasive Ductal. I am two weeks post bilateral mastectomies, chemo will begin in December. My oncologist wants to discuss possible radiation again, I'm not interested but I am not ruling it out either. I am focusing on next summer when I will get the reconstructive surgery to look normal again. Good luck to all survivors out there and keep fighting! Love ya

lifelover

Hi Eli,

I had Hodgkins 17 years ago next to my windpipe.  In the area where I was radiated extensively (my right breast) I was diagnosed with Grade 3 cancer in February 2011.  The previous year I had a mammo, ultrasound and biopsy after finding the lump.  The cancer was not identified at that time although my feeling was that it was there and the biopsy was not done effectively (it was a fine needle biopsy).  In the space of a year it spread to my lymph nodes and extensive lymphovascular invasion was found.

It's a difficult decision, Eli, and I hope you are able to make the right one for you.  Good luck and let us know how you get on.

Following diagnosis, I had a right breast mastectomy and left breast prophylactic mastectomy.

Fighter_34

Eli1642- I know you will make the right decision. There is a lady on the reconstruction board that did just what you are entertaining. She looks great.

Unfortunately I had my masectomy after I got my scary news. If I had known earlier the girls would have either been reduced in size or removed. 

Good Luck and well wishes..

need2new

I to am a HD survivor w/ DCIS. There is another on-line group that deals with Late-effects on the www.acor.org website. Most of the people are HD survivors and the info is amazing. You can find out what you need to do in terms of follow-up to stay as healthy as you can. 

Many of us on the group have had beast cancer and other cancers from the radiation treatment.

I am line for a BMX w/reconstruction with GAP flaps.

Karen 

lifelover

Karen, thanks for the acor.org link.

I hope all goes well with your reconstruction.  When are you scheduled?

lifelover

Karen (Need2new), which mailing list on www.acor.org is the late effects forum you mentioned?  Thank you!

Fighter_34

Good day, I tried as well...

But from what I have researched and was told once you hit the 5 year mark from any cancer you are at risk of developing another cancer just like anyone else in the general population. Tough fact but true. I focus mostly on prevention doesn't mean it won't happen again but it does give me a peace of mind. 

need2new

It is called LT Survivors from the alphabetical list and Treatment - Late Effects from the mailing list. There is an amazing amount of collective info there. If you join the moderators will usually send all the pertinent links that deal with Late Effects on treatments. 

 I am scheduled Jan. 19th for a BMX, hopefully skin/nipple sparing w/GAP flaps in New Orleans. I also had another late effect from radiation, a gastric leiomyosarcoma and had part of my stomach removed in Jan. 2010 and then this past Sept. 2011 a met removed from my liver. The fun never ends!

Will look for you on the list,

Karen 

lifelover

Thanks Karen.  I'm now a member of the LT-Survivors' list.  There is a lot of valuable information there.  I've already written down information to take to my doctor.  Many, many thanks for this!

need2new

Yeah - we were doing a roll call and I just posted my "stuff" there. The nice thing is there is a few folks from the UK on there too. There is a push in Europe with lte effects and creating clinincs etc. 

I 'll see you there!

Karen 

Eli1642

Hi Everyone, I was treated in 2000 at the age of 28 for Hodgkin's lymphoma with mantel radiation and abvd chemo. I am almost 40 and it was just recommended to me (after I asked)  that I consider having a prophylactic mastectomy. After the recomendation I reached out to 3 women who also had hodgkin's, one was 14 at age of treatment and the others were in their 20s. They all would have been treated in the late 80's/early 90's. I learned that the woman who was treated in her teens just lost a 6 year battle with bc and the other two have been diagnosed with bc and have had mastectomies. I wonder, how many of you were aware of your increased risk of developing bc and if you were aware would you have opted for a prophylactic mastectomy? 

lifelover

Hi Eli1642,

I was advised of my breast cancer risk in 1994 when I completed treatment although I was told my chances were "low".

When I was diagnosed with BC in my right breast in February of last year, my breast surgeon said that because of my Hodgkins treatment a prophylactic mastectomy on my left breast would be recommended. 

I'm glad I had both breasts removed and I decided on immediate reconstruction using my thigh tissue.  My decision was influenced by the thought of having both breasts more like each other.

I wouldn't have had a prophylatic mastectomy based on my risk as it was explained to me in 1994.  I wasn't aware of the increased risks until I found the lump recently.  But if I was BRCA and knew of that I would have had prophylactic mastectomy.

Does that make sense?  Oh well . . . it makes sense to me

huskylover

Hi ladies!  I'm new on this board.  I had Hodgkin's Disease in 1987 and was treated with mantle radiation and had a splenectomy and laparotomy.  I believe I was stage 2.  I'm now 40.  I had a breast cancer scare before the holidays which thankfully my biopsy was negative.  Prior to that scare, my health has been good.  Because I recently discovered how high my risk of getting BC is, I'm planning to have a nipple sparing/skin sparing prophylactic double masectomy the end of February.  I truly never knew all the cancer risks that we may come across  secondary to radiation from "back in the day."  I have learned a lot since joining this website and reading the many different threads.  I wish you all the best and thank you for sharing your personal stories.   

huskylover

Hi Eli642, I was never told of exactly how high my BC risk was until I asked the surgeon who did my biopsy a few months ago.  I would've gotton a prophylactic double masectomy years ago had I known.  I 've done a lot of research on line and was astounded and frankly frightened of what I read.  I'm scheduled to have my surgery the second to last week in Feb for my skin/nipple sparing double masectomy.  I would encourage more women with our history to do the same.  Nothing is 100%, but  I definitly feel better getting this done. 

lifelover

Hi Huskylover,

I hope your surgery in February goes brilliantly.  You sound strong and positive and that should get you through the difficult times easily.  I'm 9 months post surgery for my double mastectomy and I'm feeling very good about myself and my new breasts.  I don't look back and I look at all the wonderful times I have planned for my future.  You'll be there before you know it.  Look to the future, is what I say to myself

huskylover

Thanks lifelover.  I'm glad you're doing well.  Thanks for the support:-)

Lola123

Hello everyone! I hope you don't mind me barging in...



I'm 22 and have hodgkin's disease. I have finished my 8 long months of chemo but my doctors still want me doing rads afterwards for 20 days as I had extensive chest disease.





This whole experience has been so overwhelming. I don't think my life will ever be the same. I'm scared of skipping rads and relapsing...but also terrified of the secondary cancer risks.

I have just recently started researching prophylactic mastectomies. Not immediately, but having it done in 3 or 4 years from now. Or maybe I should have children first? I'm not sure.

What do you guys think of my approach? I have seen some pics and they look incredible, so I'm not so worried aesthetically. Seems like plastic surgeons can do miracles! I'm interested in the skin sparing type. Would I be able to keep my nipples?



I'm so sorry, I don't know anything about this topic so I'll keep on researching, but my jaw dropped when I saw a hodgkins survivor topic so I instantly had to post.



Thank for your time, you're all a great inspiration and I hope everyone is doing well!

lifelover

Hi Lola!

You're so young.  And you're going through so much.  Yes, keep posting here as it helps to get things "out" to people who understand.  Mostly.  I don't have children so I can't speak to that aspect of your decision.

You know you have to make your own decision.  It helps to be informed and it sounds like you are doing your research.

When I had radiation for HD my goal was to have children at some point afterwards.  But life being as it was, I didn't have those children.

But speaking only from my view I would have the radiation (they don't do the high doses they used to do).  Have your children and enjoy them - enjoy your life with abandon!  Later on, you can decide about the prophylactic mastectomy.  Just my opinion

Lola, I wish you the very best of everything.  Keep us informed of your journey if you care to.

Lola123

Thanks Lifelover! This really seems like a great place for support. While it did scare me a little to see so many secondary cancers, it also cheered me up that all of you lived past Hodgkins. So that gives me hope that I'll be able to go back to a "normal" life too.



I am very interested in prophylactic mastectomies, so this is a very good place for information. It's not in my immediate future, but I would like to get one in a few years. I figured having children first would be better so I could breastfeed. I'm always reading how important it is for babies to be breastfed for at least a few months...so I might wait a little for the mastectomy.



Im a member on a lymphoma board and just by glancing can understand everyone's signature over there and what it means. I read all of yours...and it's Greek to me lol. But I will keep on researching here on the board. Information is power!



Hope you're all doing well

sammyc

Hi All, can't believe i'm seeing myself reflected in your posts. I'm 39yrs old and just been diagnosed with DCIS x2 lumps. Seeing the surgeon tomorrow who has recommended mastectomy with sentinal node biopsy to get started. I'm 23yrs post Hodgkin's after 9 months ABVD chemo (no radio) and 8yrs post Cervical cancer after surgery only. Can't say i'm looking forward to this next lot of #%?* with two kids to chase. Your comments have made me realise it's our cross to bear. Amazing how we pick ourselves up and keep moving forward eh? God bless you all. I'm looking forward to more posts.