Post Hodgkin’s Risk
Post Hodgkin’s Risk Hi Everyone
I’ve posted this message on Reconstructive surgery too so apologies for the repetition but I wasn’t really sure I’d done the right thing when I saw there were other messages from some of you in a similar situation to me here!
Any advice, comments, friends would be welcome, from wherever…thanks!
I’ve been looking at the site for a while now but only just joined and I’m wondering if anyone can offer me some advice.
I am in the process of arranging to see a plastic surgeon regarding elective mastectomy - I had Hodgkin’s Disease 20 years ago and was treated with radiotherapy and splenectomy, hence I have a significantly increased risk of developing breast cancer; as I have a little boy of (nearly) 4 I really feel this is the only option for me.
I have looked at what I think are all of the options regarding resonstruction and whilst I initially thought using my own donor tissue would be best, it now seems that in fact for me, it probably isn’t.
So…(gets there at last 
) can anyone share with me their experience of implants and trivial as this may sound, can I ask to have my breasts reconstructed smaller than they are - they’re pretty large at the moment and I can’t help but wonder if having big implants of a similar size will feel strange.
I’m very scared but am more scared of being diagnosed with cancer for a second time.
Thank you for reading and my thoughts are with everyone on this site.
Sue
Helpline Dear Suzey
Please feel free to contact the helpliners and nurses on our helpline for further information about breast reconstruction. The helpline number is 0808 800 6000 and it is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
Kind regards
Forum Host
Breast Cancer Care
Hi Sue,
I also had Hodgkins, Radiotherapy and Splenectomy. I posted on here ‘ages’ ago before the site changed so I dont know where the postings will have gone.
I have now had a bilateral mastectomy with L.D. reconstruction. If you would like to ask any questions please do.
Just to fill you in on a few bits: I had round implants, asked for smaller breasts. I am 35. I’m well aware this is probably a very difficult time for you and decision to make. As I said please feel free to ask any questions.
Wishing you all the best
Yessie
Hello Sue & Yessie
I too have had Hodgkin’s - treated with chemo (VAPEC-B) and 4 weeks of radiotherapy (mantle-field) in 1992, age 24. The symptoms started when I was eight months pregnant with my first child - I now have three children ages 15, 11 and 7. I was called back re the Breast Cancer risk in December 2003 and had my first annual mammogram in June 04 (it took that long for my local service to organise the programme and the local BUPA hospital’s radiologist refused to do it privately in the meantime because of the ‘special nature of the recall’. The mammogram was clear as was the one taken in June 2005. Later in 2005 I asked the oncologists at my regional cancer centre to refer me to a regional breast cancer specialist to discuss the possibility of a prophylactic bi-lateral mastectomy. I was told that the wait for such an appointment would be very long so I put it to the back of my mind as best I could. In July 2006 I was called back to my local breast unit when my annual mammogram showed an abnormality. After an ultrasound and biospy I was found to have Invasive Ductal Carcinoma of the left breast.
I still hadn’t heard from the regional breast cancer unit and decided to call them to see what had happened re my appointment. It turns out that my request had been forgotten and no referral was made.
In Aug 2006 I had a full mastectomy and then between Oct 06 and Feb 07 chemotherapy (Docetaxel & Capecitabine). Radiotherapy to treat my breast cancer has been ruled out and I have already had my life-time limit of anthracycline drugs (Doxyrubicin/Adriamycin/Epirubicin) with my Hodgkin’s treatment so I was given drugs usually reserved for more advanced cases of breast cancer. Also, the type of breast cancer I have is one of the most aggressive and more difficult ones to treat - triple negative, grade 3, which means that Tamoxifen, Herceptin and such hormone-related drugs do not work and are not an option.
My local oncologist and breast surgeon have no doubt that the cancer is due to my radiotherapy for Hodgkin’s and have agreed to performing a prophylactic mastectomy of the remaining breast later this year - I need to wait 6 months after chemo to be declared fit enough for surgery.
My reason for posting this is to say that you both absolutely made the right decision to go for preventative surgeries and I hope that all has gone well since the surgery and you have not had too many difficulties. Obviously I am kicking myself hugely for not chasing up my regional oncology/ breast cancer centre about my appointment and at the same time I feel very let down. I don’t know whether I would have opted for preventative surgery 2 years ago and I wasn’t given any advice about surgery when recalled in Dec 2003. I can’t decide whether I should make a complaint - my energies are really needed to be directed to recovery and staying well.
I am very interested to know what advice you were given and how you came to the decision to go for surgery. When you were called back re the Hodgkin’s risk were you counselled about preventative options and when did the suggestion of surgery come? I hope these questions are not too personal. You are the first people I’ve found who carry the same bc risk due to a history of Hodgkin’s radiotherapy. I’ve been trying to find others affected by this since originally being called back in 2003 …apparently in my Health Authority area there is just one other person affected.
Wishing you both all good things. Sue, I hope the reconstruction goes well… let me know what you decide. I’m thinking of having recon-surgery maybe next year so I’m interested in any info on the types of surgery available. I’m definitely going for smaller than my now (lop-sided!) 44G! But I’m actually quite relishing the idea of being completely flat chested for a while… no more jogger’s black-eye.
Take care & thanks for listening
Jules
Hi Yessie and Jules
Sorry I feel a real twit - I haven’t been able to access the internet for a while now and consequently saw your post Jules, on diagnosed with breast cancer post radiotherapy for HD. Thank you both for your replies.
Yessie, can I ask you - was your mastectomy prophylactic or because you developed breast cancer and where was your surgery done - sorry but I can’t seem to see your profile.
Take care both of you.
Sue x
Dear Jules and Sue,
It’s been ages since you and I posted, but I figured if you did find this and it was helpful in any way then all to the good!
By now I’m sure there will possibly have been many changes for both of you.
Sue, my mastectomy was prophylactic, well, except they’d found DCIS so…It was me who ‘randomly’ requested a Mammogram and hadnt had any symptoms, screening or knowledge of my risks prior. I was deemed a bit ‘paranoid’ I think by my GP, but thankfully she consented!!
My surgery was done at the Royal Surrey Hospital by Mark Kissin over a year ago now. I did get a 2nd opinion, and it was a good one too, but I wanted to be somewhere ‘I’ felt safe and I knew Mark Kissin had a wealth of experience. The Breast Care nurses were fantastic, Helen in particular, she got me (got NOT pushed) through the op’ I was close to bailing!
Jules if you’d like any info on my experience of the surgery let me know I’ll try and keep an eye out this time!
Best wishes to you both. Yessie x