Hello there
I am really keen to hear from anyone who has a history of Hodgkin’s Lymphoma (or Hodgkin’s followed by Breast Cancer) who were invited to undergo annual screening due to the high Breast Cancer risk caused by mantle field radiotherapy.
I had Hodgkin’s Lymphoma (Nodular Sclerosis) in 1992 at the age of 24 (first symptoms occurring March 92 when 8 months pregnant with my first child). My healthy son was born at the end of April 92, I was diagnosed in the July and treated August-October with VAPEC-B chemotherapy and 20 sessions of mantle field radiotherapy. Thankfully I was given the all clear in Jan 93. 
In 1997 I was diagnosed with an underactive thyroid - a common long term side effect after mantle field radiotherapy - despite the fact that I was given a lead shield during treatment.
In 2003 I received a letter from the Christie Hospital, Manchester (the centre responsible for my Hodgkins care) inviting me to attend for a review due to the recent decision by the Dept of Health to offer Breast Cancer screening to the 5000 women now considered at high risk of BC due to previous radiotherapy treatment. My level of risk was considered to be between 1:7 and 1:3 of a BC diagnosis before I reached 50. I commenced annual mammograms in June 2004 but was exceptionally concerned by the lack of counselling offered - I was not part of a high risk clinic and was not offered regular access to a Breast Cancer Specialist Nurse or consultant. I wanted to know whether I should consider a preventative bilateral mastectomy. No one seemed to want to take responsibility for my Breast Care and I was passed from pillar to post between my GP, local breast cancer clinic and the Christie Hospital. Despite the decision to offer screening based on the DoH information released in Nov2003, all agencies seemed to be confused as to what advice to give me and who I should be placed in the care of. Apparently, it was just me and one other lady in the catchment area of our local breast care centre affected by this risk.
In September 2005 after my 2nd clear mammogram, I visited the Christie Hospital’s new ‘Long Term Effects Clinic’ - a newly set up clinic to monitor the longer term effects of cancer treatment (though not a clinic for breast care). Disappointed in the lack of counselling offered re my high BC risk I felt it was time to insist on being referred to a Breast Cancer Specialist. I was assured a referral was now on its way to the Regional specialist who would be able to advise me whether preventative surgery would be appropriate, but I was warned that the waiting list would be a number of months.
At the end of 2005 & into 2006 my Mum was diagnosed with terminal Renal Cancer so thoughts of my own health were not at all on my mind and I didn’t think about chasing up the referral.
In June 2006 my 3rd annual mammogram showed an abnormality in one breast. I had a biopsy and a week later the result came back as Breast Cancer. It thankfully had been caught early and was a Stage 1, Grade 3 and Triple negative ER-/PR-/HER2-. I was placed under the care of a local team of specialists in breast care & oncology. I was advised that my best option would be to have an immediate full mastectomy with level 2 node clearance followed by chemotherapy (6 x 21day cycles of Docetaxel & Capacitabine).
Obviously my immediate thought was the referral already made to the Regional Breast Cancer Specialist and I realised that I had still heard nothing in 9 months. I chased up the referral to find that absolutely no referral had been made and no record had been made of it either. The clinic’s consultant had completely forgotten to do it. I’d been waiting 9 months for nothing. Most gallingly, if the referral had have been sent I would have had the opportunity to discuss and perhaps seek preventative surgery before my Breast Cancer occurred - a double mastectomy, yes, but I wouldn’t have needed any of the high dose chemotherapy.
During 2006-2007 my treatments went very well and the moment I was well enough I opted to have a second mastectomy as a preventative measure. I was given the all clear at the beginning of 2008 and now continue to attend 6 monthly checks at my local breast care unit (who since my diagnosis have been truly excellent, instantly approachable and wonderfully supportive) and annual checks (still) at the Long Term Effects Clinic, Christie Hospital - who begrudgingly apologised ‘if an error had been made’ but also state that I ‘couldn’t possibly have asked for a referral as the consultant seen made no record of it in my notes’. Arrrrgh! I’m not going to make a formal complaint. Hey, we all make mistakes and in any case there’s no guarantee that it would have made any difference at all to the outcome. I have always and still continue to have the highest of respect for the high skill and excellence the Christie Hospital offers in all areas of oncology.
Sorry to give such a lengthy history but I am wondering if any other ladies reading this have had a similar experience. I’m particularly interested in what type of care those at high risk of BC have been offered aside of annual mammograms. Were you placed in the care of a clinic with access to counselling? Did anyone offer you advice on preventative surgery? Are you happy with the care you have received?
Does anyone feel that we should be compensated for being placed at such high risk due to being given radiotherapy treatment with no concern as to possible long term effects?
I can’t help having mixed feelings on all this - the Hodgkin’s treatment I received saved my life and I am grateful for being born in a time when something could be done to bring about a cure. But surely we need to know how many women are now dying from Breast Cancer as a result of the radiotherapy treatment they received (1960s-1990s) for Hodgkin’s Lymphoma? The government has compensated those haemophiliacs who were treated with blood products later found to carry HIV. Does it follow that there should be compensation for women who were given radiotherapy treatment later found to cause Breast Cancer? We are talking about less than 5000 cases in the UK - it wouldn’t cripple the already flagging economy. I’m playing Devil’s advocate here.
I’m genuinely interested in everyone’s opinion on all of this and keen to hear your story.
Sending keep well wishes to you all
Julie