high risk due to treament for hodgkin’s disease
high risk due to treament for hodgkin’s disease Hi
I’m new to this forum. Tried posting on the reconstruction bit, but got no response so I’m trying here. My story is that I had Hodgkin’s disease about 16 years ago. I was treated with chemo and mantle radiotherapy. Mantle radiotherapy has now been associated with an increased risk of breast cancer. I was at my local breast care centre last week, having some nipple discharge investigated, which looks as if it is benign. The surgeon offered me preventative surgery and reconstruction to reduce my risk. My risks apparently will increase over time (I am 38) , not decrease, being about 1 in 3. She said surgery would reduce this by about 90%. I’m really just looking for any input. Is there anyone out there in my particular circumstances? For those who have had preventative mastectomy for any reason, what are your experiences? What sort of reconstruction did you have, if any? And what would you do? Live with the risk or go for the surgery? I can’t have more radiotherapy if I do get breast cancer because of my previous treatment. I am seeing the surgeon again in December to discuss it again, and I’m arranging to see someone for a non-surgical input too. Is there anything else I should be doing?
Thanks for listening - I’ve got a lot to think about!
GET INFO Hello there,
Just wanted to say sorry for your predicament. You have a serious amount of thinking to do but before any thing is decided get all the info you can. Talk to as many people as possible. I havent had the same problems as you but I want you to know you’re not alone.
Good luck, take care of you
Love Binner
have had preventative mastectomies Hi teepee,
I’ve just read your post and wanted to respond!
I’m not in your exact situation, but I had a double preventative mastectomy in April 2006 and just wanted to share my experience with you.
I can relate in a small way as my mum had Non-Hodgkins disease last year (she had unconnected breast cancer 5 years ago) and she now has to deal with the issue of being limited in treatment options if needed in the future.
My reasons for having the operation were purely genetic (I have the BRCA2 gene). I inherited the gene from mum and my two sisters also have it. We have all had the same operation this year!
I can honestly say I am so relieved I have done it. I know it doesnt 100% reduce my risk but I feel I have done the right thing.
Having never had an operation before I was very scared but 6 months on I am completely OK and wear prostheses which I dont find a problem - it was quite good being able to select your size!. I think I will probably have reconstruction in a few years (my youngest sister has just had her op and been reconstructed at the same time and I am very impressed with her results! She has had the tram flap method of reconstruction).
Recovery was painful at times (mostly due to the drains) but I was back at work 2 months after the op and now dont even think about it most of the time.
Sorry if I have rambled a bit! If there is anything you want to ask please do. I do feel for you having so many things to think about but I certainly found it helpful to talk to others who could relate in some way.
Take care.
For teepee Thanks for posting, you sound like you’re having a tough time.
If you would like to talk about how your are feeling and what the best next steps would be for you, then you might like to contact our helpline or our Ask the Nurse service
You can find these services on
breastcancercare.org.uk/content.php?page_id=5072
Hope this is of help
Breast Cancer Care Host
Hodgkin’s Disease/Breast cancer Hi Teepee
I also completed treatment for Hodgkin’s disease some years ago(19 yrs ago) and also underwent Mantle radiotherapy and chemo.I was diagnosed as having widespread high grade DCIS in JUly this year and I am now 5 weeks post mastectomy and IGAP recon( using buttock fat had to be to my advantage!)My situation is different because I developed the DCIS having lived with the risk.I am now awaiting mastectomy and IGAP recon for the other side in November.I have also been quoted the risk reduction to 10%.Having 2 very young children made my decision easier I think.The surgery itself was long but 5 weeks on I am back to normal and very active.MY recovery was uncomplicated and I am delighted with the results-buttock and breast!
It’s hard to think you have been cured of the Hodgkin’s then have to face the consequences of the treatment!
All the best in your decision making.
Maisie
Thanks I am posting this response on behalf of teepee.
Moderator
Breast Cancer Care
Hi Maisie
thanks for this. I’m glad your surgery went well. Will you have to have any chemo, or are you considered cancer free now? I also have 2 children, aged 10 (next week) and 8 (next month), so I really want to make the right decision. It is not easy to get the true meaning out of all the statistics that are thrown at you, and there keeps being stuff in the news which just seems to make it more confusing! I’m going back to the hospital tomorrow to discuss the risks further, this time not with a surgeon but with someone medical rather than surgical. Then back in December to talk to the surgeon again.
How did you decide which sort of reconstruction to have? Sorry to ask so many questions, but it all helps!
Anyway, thanks again and hope your next surgery goes well.
Teepee
For Teepee I won’t need any chemo given that I had DCIS with clear margins and no evidence of invasion.An option was Tamoxifen to offer protection for the other side but drs were unable to say how much reduction in risk this would offer.Having made the decision for bilateral mastectomy they all agreed I made right decision.
Choice of recon was difficult.My initial thought was to choose an option that was the ‘least’ in terms of surgery but after discussion with plastic surgeon realised that flap recon would offer ( for me) the best cosmetic result in long term.I did’t have enough abdominal tissue for a TRAM (I was delighted at this revelation) but then we realised I had plenty of buttock fat! The major down side was I could not have both sides done at same time.However the thought of a ‘free bottom lift’ spurred me on!I have been fortunate and I have had no complications and my next surgery was planned very quickly -I was keen to put this all behind me and recover before Xmas.
I lived with the risk of this developing for some years and I will be honest and say I did not consider preventative surgery.
My children are both under 7 and they were a major influence in opting for bilateral surgical option although form mammograms it looks as though one side is ok.
Glad to answer any more questions
Maisie
Hi Maisie
thanks again for your reply. I was interested to read of your type of reconstruction, as I’d not heard of that. I find that one more attractive than some of the other options, as I am quite slim and have been told I don’t have enough tummy to do a TRAM and would be very flat with the Lat dorsi (?) type of recon. Like you I initially thought go for the least surgery option of implants, but I’m not convinced that I want to do that now (if I do go for preventative surgery) - so reading about your IGAP was very interesting.
I saw another doctor today, who was very helpful. Are you part of the screening programme for people treated with mantle radiotherapy? Is that how your cancer was picked up? If you don’t mind me asking, how old are you now? Don’t mind if you don’t want to answer! I’m 38! Were you ever offered prevantative surgery? I wasn’t when I went for the intial risk discussion 2 years ago, but since then I have had discharge and the doctor I saw was a surgeon and she offered it. How long have you known about the increased risk?
Sorry! More questions! But very interested to read your experiences and it really does help to talk to someone who has had HD too - we share quite a rare combination of circumstances that don’t really fit into any of the other categories, so it is very useful for me!
Thanks again.
Teepee
For Teepee Hi Teepee,
Don’t mind the questions at all!I am 37 and was part of the screening for radiotherapy patients when diagnosed.I attended for first mammogram last year and second one this year when micocalcification was noted.I then had a core biopsy which led to surgery.I was not offered surgery prior to the diagnosis but as you will have noticed form my profile I have a medical background and was quite well aware of the risks because of my job!However, even though I was very aware you still don’t think it will happen to you!
I don’t know how common IGAP/SGAP recons are(they are very popular in the states) but as a relatively new venture for the unit in which I had my surgery they are all very impressed.The recovery rate seems to be quicker compared to TRAM etc because of the lack of major muscle involvement.Six weeks on and I am back to normal -swimming,running after children etc!
The one benefit you have is that you have time to make the decision that is right for you-it is major surgery-even as a medic I was shocked!
Not so nice being on the receiving end!
Best Wishes,
Maisie
RE POST MANTLE RADIOTHERAPY/HODGKINS Hi TeePee, (I POSTED THIS ON THE RECON SECTION YOU MAY HAVE MISSED IT)
I too had Hodgkins Oo some 17 years ago; I had Mantle Radiotherapy and 2 years later Chemotherapy.
I have just had a Bilateral Mastectomy and Lat’ Dorsi Reconstruction. I kept my nipples!
My story is slightly different to yours in that noone told me I might be at risk; and dont ask me why but I randomly requested a Mammogram in June this year. They found DCIS; post Mastectomy LCIS in the removed tissue. (I’m sure you are aware that this is early cancerous change, in some people it never goes any further, but having had radiotherapy I felt it was highly likely).
I met with another patient of my surgeons, who like you had been informed of the risks and had had NO signs of cancer etc. She like me is 35. Anyway, she had the same surgery as me (bar sentinal node biopsy) and is VERY happy that she did. (this is of course how ‘she felt’ we’re all so very individual, although I have read and heard that people feel relief at not having to worry!) she had this about a year and a half ago and is as active as ever, she had two children she carrries and when i visited she was carrying enormous boulders in her garden to make a rockery!!
I am 7wks into recovering from the surgery and not doing too badly, my boobs look AWESOME! (of course I have scars, but my incredibly image conscious/perfectionist man, thinks they are better than before). I wont lie its painful and early days can be frustrating, but every week there has been miraculous improvements and I’m feeling way more normal!! It is nice to think its gone and the risks are now extremely low.
I appreciate the position you must be in, and that the decision feels like the hardest thing on earth, whatever you decide WONT be wrong. I wish you much much luck!!
Anyway, I leave the essay there, but if you fancy anymore info etc. just drop me a line!
K x
For K Hi - yes I did miss it! I only came back here today to look again, as I’ve been back to the surgeon today. Because the discharge is still happening and is occasionally bloody, but mostly clear/yellow, she offered me surgery to remove the duct to have a look at it. I think I am happy with this. If the surgery shows no cancer, then I’m back to where I started with as far as deciding whether to have the preventative surgery. If it is not clear, it’s a whole new ball-game anyway. I’m having it done on 2nd January.
I have just replied on the other thread too as I found that first! As I said on there, it is all hanging over me a bit. I’m not spending ages worrying about it, but I have had the discharge since July and despite nothing showing up on mammograms/ultrasound/physcial examination, I still feel anxious it may be cancer. And even it if itsn’t the whole decision whether or not to have the preventative surgery is still hanging over me.
Thanks again for replying. sorry my reply comes so long after yours!
teepee
Hi Teepee I’ve just posted in ‘reconstructive surgery’ for you!
Best Wishes,
Maisie
Thanks Maisie Thanks for the post - I posted an update last week in “reconstruction”, but you may have missed it. I had my duct excision last week, recovering OK, although it is still quite sore. Had a local rather than a general which was OK. I get the results next week, which I’m not looking forward to. Either I’ll have my decision made for me, or I’ll be back to square one. Anyway, I’ve found this site very useful. Hope you are doing OK.
Teepee
For Teepee Hi Teepee,
Just a quickie to say I hope you’re doing well and not still too sore!!
I wish you ALL the best with your results I truly do.
Should you ever want ot ask anything more, dont hesitate to ask.
I do usually tend to be on the recon forums tho, just so you know.
K xx
Hi Teepee Hi,
I don’t know how I managed to miss your update! I am doing well and returning to work next week following second mastectomy and recon.I hope the waiiting passes quickly-its the worst bit-I can remember not sleeping too welland stress levels running high!
You just need to know don’t you-all the best for Friday.
Best Wishes ,
Maisie.
got results Hi Maisie, Yessie and anyone else
I have posted on recon too, but thought I’d put this here. Got the results - it was a papilloma, which is great news. I am now back to thinking what to do next and have an appointment to talk with a surgeon in a few weeks. Unfortunately, the surgeon I saw before who is also a plastic surgeon and also has done work with ex-Hodgkin’s patients and breast cancer, is off work for a few months (having a baby), so I can’t discuss it with her. At the moment, I’m tending towards a watch and wait policy, but keep changing my mind when I think about the prospect of more chemo etc etc.
Anyway - keep in touch with your news - I will still be looking on here and probably posting too! Thanks again for posting on this forum - it is so hard to find info or other people in the same situation as us, so I’m very grateful!
Teepee
Hi Teepee Hi Teepee/Maisie
How are things now, its been ages hasnt it!
I’ve been busy, getting work and trying to get fit, move house etc.
Things seem like a rather horrible dream at the moment, I have my moments of random tears, being sad and not liking my boobs. These pass… It is odd the whole things really, and such a whirlwind.
I think there should be more info out there for post Radiotherapy/Hodgkin’s people; my surgeon is lookng into this with me, albeit slowly. He’s always stupidly busy.
Anyway, hope you have a restful, un-stressful Easter break both of you and that you are both doing well!
love K xx