Diagnosis of Breast Cancer post mantle-field Radiotherapy for Hodgkin's Lymphoma

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Hello there! My name is Jules, I’m 39 and a mum to 3.

I’m interested in discussing any issues regarding the risk of developing Breast Cancer after having mantle-field radiotherapy treatment for Hodgkin’s Lymphoma (at under the age of 35).

I’d be pleased to hear from anyone has been affected by this risk/has been recalled by their oncology centre to discuss the risk of breast cancer/has been placed on annual mammograms or MRI/decided to have or not have preventative surgery etc etc.

I had the first symptoms of Hodgkin’s Lymphoma in 1992, age 24 and 8 months pregnant. Soon after my son, Guy, arrived I was treated with chemo (VAPEC-B) and 4 weeks of radiotherapy (mantle-field). I was given the all clear in Jan 1993 and have had few problems, excepting a failing thyroid gland, until recently.

In Dec 2003 I was called back by my regional cancer centre to discuss the risk of developing Breast Cancer due to the radiotherapy treatment I received for Hodgkin’s in 1992. I was placed on a programme of annual mammograms and had my first in June 04 (it took that long for my regional & local service to organise the programme). I had enquired about having an initial mammogram done privately at my local BUPA hospital so that I didn’t have to wait for so long but was refused by the BUPA radiologist because of the ‘special nature of the recall’.

The mammogram thankfully was clear as was the one taken a year later 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 merits and 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 biopsy I was found to have Invasive Ductal Carcinoma of the left breast. Breast cancer!

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 had been 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. I don’t know if this is the case for most other breast cancers post-Hodgkin’s radiotherapy.

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.

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 anyone (who has a post-Hodgkin’s breast cancer risk) has been given and whether anyone has opted/or not for preventative surgery, if anyone when called back re the Hodgkin’s risk was counseled about preventative options and did the suggestion of preventative surgery come up? I hope these questions are not too personal.

I’m also interested in knowing whether there are specific types of breast cancer that tend to develop in these cases (e.g. what proportion are triple negative, or grade 3, ductal, lobular or other? etc). How many cases are there currently in the UK? Treatments available or preventative therapies in the pipeline?

I’m interested in anything and everything and especially in hearing other stories and experiences.

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 all good things.
Take care & thanks for listening

Jules

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Hi Julie

Sorry to hear your story.

I’ve been using the boards for quite a while and there are several women who have posted who have breast cancer following radiotherapy for Hodgkins. If you try the search facility you may find them.

I have triple negative breast cancer so have gathered a fair amount of information about it, and haven’t noticed that post hodgkins people are particularly prevalent among our numbers…but it would be interesting to know if this is the case.

There is a new site in the US specifically for triple negatives. You might like to register:

www.tnbcfoundation.org

Hope you get some replies from others in similar situation.

best wishes

Jane

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Thanks Jane
I have the TNBC Foundation on my list of favourites… it’s been an excellent site for sharing information, meeting other triple negs and comparing notes. I registered last month when the membership was just 33… I think it’s now approaching 100 and growing bigger by the day. I’ve signed up for email alerts on the site so it makes it easier to keep up with new posts… it’s a shame the same isn’t offered here…unless I’ve just missed it somewhere.
Thanks again Jane & take care
Catch you on this site or the TNBCF.
Jules

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Dear Jules,

I am very sorry that the treatment for your first cancer should have caused you another very serious illness, breast cancer.

If you want more information concerning the purely medical side of your situation, you could
consult www.pubmed.gov and enter “radiotherapy for hodgkins and breast cancer”.

I would like to send you my very best wishes,
Brigitte

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Hi Brigitte (Amazone)… and thankyou for your best wishes & pointing me towards a whole collection of studies on the Hodgkin’s/BC subject. I’ve now got plenty of reading material to get my teeth into!
Wishing you all the best & take care
Thankyou again
Jules
x

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Hi Jules

My name is Sue.

Firstly I’d like to say how very sorry I was to read your story.

I was 20 when I was diagnosed with Hodgkin’s and I’m now 44. Like you I was notified of the risk regarding breast cancer in 2003 though nobody seemed able or willing to give much more information other than offering annual mammograms; as I had only recently had my only baby I was very scared and immediately discussed prophylactic mastectomy with my husband but no-one else seemed that concerned so like you I just tried not to dwell on it.

Obviously my baby was my overriding preoccupation and I lapsed from checking the internet for information after the initial period but had my mammograms.

Then more recently I was contacted by the institute of cancer research asking me to participate in a study which involved me giving blood annonymously for screening; I had no problem with this but was very alarmed to read that the risk was actually ‘greatly’ increased and after A LOT of internet research I became increasingly worried.

I wrote to my GP and paid privately to see a consultant breast surgeon who did his best to reassure me but at last someone discussed prophylactic surgery and following further discussions with my husband and extensive soul searching I have decided that I really feel this is the only way forward for me and just yesterday I had an appointment with the surgeons at Whiston Hospital to go over my options for reconstruction. I have a further appointment in 4 months during which time i will see the breast nurse to re discuss those options and to see a clinical psychcologist. We can then move forward and hopefully I will have the operation sometime mid-next year - not soon enough or my liking now I’ve decided but the procedures have to be followed.

I really wish you well with your treatments and surgery and hope you will keep in touch.

Best wishes

Sue x

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Hi
I have not had Hodgkins but had TB as a 6/7 year old in 1967/68 and had very many x-rays, last year on my first dx I had my lumpectomy, wle and chemo then read on the internet that x-rays as a very young child can cause BC so have assumed that this is why I have it and have had it twice,two diferent cancers in the same breast, am triple neg, have had mastectomy now and just finished taxotere, was risk assessed to having rads so have had them, but on the Johns Hopkins site in the USA they strongly disagree with rads after the amount of x-rays I received and the era I received them in, when little was known about the effects compared to today. and the machinary was antiquated, and poorly maintained. I am worried about getting further cancers though and the damage to my lungs will become more apparent as time goes on…last year the e-cmf didnt get rid of my second lump, and this year I had to have the taxotere reduced by 40% due to neutrophina so am worried about mets…as I just feel that the cancer is inevetablly going to return because of the x-rays I received, somewhere or another…I asked for my right breast to be removed they said no as it was a healthy breast, but I would have been much happier for this to have been done, even after the trauma I have felt having the mastectomy and 16 lots of chemo.
also my lumps were both very small 9mm and 15mm when i found them.

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I had hodgkins 35 years ago as a child. Like you I have developed BC. I had a mastecomy last November followed by FEC chem for 6 sessions. I am currently awaiting a bi lateral mastectomy with reconstruction ( probably oct 07) on my “good” breast. I have also found that I have thyroid problems and had a partial thyroidectomy 20 years ago. Prophylactic bi-lateral mastectomy was never discussed with me as part of my screening process during the 2003 recall. I believe myself to be the first in this hospital area to develop BC after hodgkins. I have grade 2 and am on tamoxifen at the moment. I have also developed leaking heart valves proir to this BC and this has been closely monitored during the chemo. I have had regular echograms. On paper the odds can be stacked against us but I feel well and wish you all the best with this current illness. I just need another 35 years in remission
Good Luck
Noddy