Hi girls, i have had Hodgkins lymphoma in the past, 18yrs ago and in remission ever since treatment,chemo , and due to mantle radiotherapy i had then, my BC risk is higher, and here I am, is anyone else here got a similar story?
I hope not, but if yes id like to hear from you!
Hi Juls
My daughter had Hodgkin’s lymphoma 3 years ago, had chemo which made her really ill and rads. Haven’t even thought about her being at risk after that even with me having bc, I can’t go there, been through enough over the last 3 years. The rads did make her thyroid go under active though and she has to take medication.
Have you actually got bc or just at risk?
By the way my daughter gave birth to our first grandchild 5 months ago, a miracle after the chemo.
Take care.
Jan
Hi Janice,
Sorry this has taken so long,
To answer your question, I was diagnosed with Hodgkins when I was 27yrs in 1989, in 2003 there was a government decision due to research found, that every women who had recieved mantle radiation as part of their treatment for Hodgkins under the age of 35yrs between the years of 1962-2003 were sent a letter to put them on a fast track breast screening service. As the risk of getting BC was found to be increased in this population of younger patients.More than 5,000 women in the uk were contacted, the Independent Newspaper published an article about it.
I was diagnosed in Oct 2007, so as you can imagine 2 nd time around with Ca has been devastating. I dont want to alarm you, but these are my facts.
I hope your daughter is well now, and sorry to hear that you are battling through BC yourself at the moment. There is a good article on Hodgkins and BC on Cancer backup site, I hope this comment isnt edited as it may help inform you and your daughter.
Take care ,
Julie xx
I’ve got a friend dx with Hodgkins in her yoouth , bc at 50!
Hi joseymarie,
Thats hard to hear, 2nd time around is scary, how is your friend?
Julie x
She had hor+ and is on Tamoxifen- doing fine after 3 yrs! Still has lymphodema in her leg after first dx though!
At the risk of sounding stupid what is mantle radiotherapy is it different to the one we have for bc?
Jan
Hi jan
Mantle radiotherapy is how rads was done over 15-20 yrs ago, a protective shield/mantle was used to protect areas not being treated,I had one made from perspex type material and had radiotherapy tattoo markers on my chest and back.
hope this answers your question.
j xxx
Hi Julie
I had Hodgkins 15 years ago when i was 18. I am being screened yearly because of the increased risk of BC. I missed last years mammogram because i was pregnant and now i am breastfeeding so as soon as i finish i will book another. I’ve gone through lots of emotions about the risk i face and i guess now i am beginning to think about it alot again as i know i have a mammogram coming up. The doctor said as i was so young when i had the radiotherapy, my risk is about 1 in 3, which if i think about it too much i find terrifying. She kept saying that it didnt mean i would definately get BC, but obviously i would have been more reassured with a lower risk.
I would love to hear from you. Posted a similar message to yours a very long time ago, so i am so pleased to have found someone to talk to.
Sarah
Hi Sarah,
Sorry to hear you had it so young, lovely tho to hear that you managed to get pregnant what a gift!, yes the risk is slightly increased for us who have had HD, but its better to be screened regularly and IF its ever found at least it wil be found and treated early.
I never had a hodgkins relapse and have been in remission now for 18yrs, Im 46 now, had HD when I was 29. Diagnosed with BC oct 2007 when I found a small lump myself.The mammo didnt pick it up. Any questions ask away, my treatment is going ok now and nearly finished, I had to have surgery and chemo because cant have any more radiotherapy after HD treatment.
There was an aricle written I think in the Independant 2003, you could google for it, it gives a few stats, also the cancer research site has an article about BC and Hodgkins.
Take Care Sarah,
Julie x
Hi Julie
Thanks. I will look them both up. Hope the rest of your treatment goes ok. One thing i would like to ask is would you have ever considered a mastectomy as prevention? Its something that is always in the back of my mind. Not something to consider lightly is it?
Sarah x
Hi sarah,
I was asked if I wanted to consider this for my left breast, mastectomy with immediate recon is a big op and I wouldnt have managed it physically twice in one year or at the same time or emotionally as you can imagine.
I discussed this with my onc at length, risk factors all considered.We decided to adopt the ‘sit and wait’ policy.Even though Im body confident, have small boobs and have a young outlook, 2 in oneyear for me was too big to deal with. Its a major decision, the Oncs set up counselling sessions to help deal with it, rightly so too.
Hope you are ok, and not eating too much choc!
love Julie xx
Hi,
I am new here, just got diagnosed with DCIS, Grade 3, and I had Hodgkin’s when I was 25 years of age. I am now 40 and the doctors tell me the DCIS is most likely due to the radiation I had for Hodgkin’s.
I am trying to find some info for breast cancer treatment options for Hodgkins survivors (high risk) and would love to connect with any of you who posted in this thread.
The doctor tells me I have to get a double mastectomy because I am so high risk, and now have DCIS. Can anyone advise? Or another info on DCIS that might be relevant?
Thanks so much.
Kat
Hi there
I am new to this. I had Hodgkin’s in 1994, I was 25 yrs of age. I was just diagnosed with DCIS, grade 3, less then 1cm. Anyone have a similar experience?
My doctor told me I should have a bilateral mastectomy but I am looking for another way to treat my DCIS, because the reconstruction for those of us who have already has radiation is very complicated.
Would love to hear from anyone with similar history or even with DCIS now.
Thanks
Hello there
I am really keen to hear from anyone who has a history of Hodgkin’s Lymphoma/Breast Cancer and who were invited to undergo annual screening due to the BC risk caused by mantle field radiotherapy.
I had Hodgkin’s Lymphoma (Nodular Scerlosis) 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, I was diagnosed in 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 BC screening to those 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 getting BC before I reached 50. I commenced annual mammograms in (the first being 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 Christies. 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. Apparantly it was just me and one other lady in the catchment area of our local breast care centre affected my this risk.
In September 2005 after my 2nd clear mammogram, I visited Christies 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 it’s 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 axilliary 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 Christies clinic 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 occured - 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, Christies - who begrudgingly apologised ‘if an error has been made’ but also declare that I ‘couldn’t possibly have asked for a referral as the consultant seen made no record of it in my notes’. Arrrrgh! There’s no point taking my complaint any further. Hey, we all make mistakes and 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 highest 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 regard 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 haemophyliacs 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
Hi Julie
I also had breast cancer in 2005 after mantle radiotherapy in 1986.I was missed in the recall in 2003 and then when I got breast cancer was told the risk was’nt bi lateral. I now know it is. I recently decided to have preventive mastecomy to the remaining breast but discoved pre cancerous cells just before the surgery.I also wonder about compensation.It did say in the dept health document that patients can pursue it. I read recently that the effects were known in 1970’s. I was never warned of them. It would be interesting to talk. Take Care
Molly12
Hi Molly12 and MumsyMum,
I saw your posts and wondered what you two had come up with, my story is similar to yours, Hodgkins diagnosed in 1987/88 Mantle Radiation, Underactive Thyroid, Breast Cancer in 2006, Bilateral Mastectomies. I was never told about the risks of Radiation and somehow slipped through the net of any warnings of the higher risk I was at. I had just been feeling unwell (still am) and I requested a Mammogram. THANK the lord the G.P. I saw ‘humored’ me!!
I too have ‘wondered’ about compensation but agree, it saved my life. Well, slowed things down, cos they actually under staged mine, hence Chemo and Splenectomy 2yrs later. They conveniently called this a relapse! (Hmm).
Be good to hear from you.
x
Hi Molly12 and MumsyMum,
I saw your posts and wondered what you two had come up with, my story is similar to yours, Hodgkins diagnosed in 1987/88 Mantle Radiation, Underactive Thyroid, Breast Cancer in 2006, Bilateral Mastectomies. I was never told about the risks of Radiation and somehow slipped through the net of any warnings of the higher risk I was at. I had just been feeling unwell (still am) and I requested a Mammogram. THANK the lord the G.P. I saw ‘humored’ me!!
I too have ‘wondered’ about compensation but agree, it saved my life. Well, slowed things down, cos they actually under staged mine, hence Chemo and Splenectomy 2yrs later. They conveniently called this a relapse! (Hmm).
Be good to hear from you.
x
Here I am again…another mammogram coming up in May. Feeling like a ticking timebomb to be honest. I’m in a different position now, had my beautiful children so nothing to stop me from seeking some honest advice about preventative surgery. Made the first step today and spoke to Breast Care nurse. She said she sympathised with us all as we are such a small group of women ‘out on a limb’. We dont really come under any specific care plan do we? She advised me to get a GP referral to the Breast Surgeon who could then discuss surgery options and offer counselling…all very scary stuff. It scares the life out of me but I’m trying to think of it all positively in that I’d be actively doing something instead of sitting and waiting for what i feel is the inevitable.
Does this sound like the right way to get to speak to someone? Really hope you are all well.
Sarah xx
hi sarah
the hodgkins disease ladies at my unit are under the care of the genetic breast care team purely because of the increased risk.
im not sure how high risk families are cared for in other health authorities but here all those with a significant family history or gene changes are come to the familial breast screening clinic as do ladies who have previously had hodgkins.
the risk for hodgkins increase from around 8 year post upper mantle radiation treatment and our patients are all fully counselled by the genetic nurses who discuss their risk and the planned management.
screening starts from 8 years post treatment or from age 30 at earliest as we dont do mammos before then… these ladies get annual mammograms even in their 30s where as genetic ladies would be on alternate year mammos until 40. from 50 they are on 18 monthly mammo as still higher risk but not as high a risk as those under 50.
since screening started we have had two breast cancers in our hodgkins ladies one was DCIS only and the other was a grade 3 triple neg cancer… although there were two cancer we have around 50 ladies or maybe more getting screened annually… so they have a higher chance of not getting breast cancer… 1 in 7 chance of getting breast cancer but 6 in 7 chance of not getting it.
we dont have a set protocol for risk reducing surgery but if somebody wanted to discuss it the option is there for them to have access to the neccessary experts.
i can refer them directly for counselling or liaise with the breast and plastic surgeons so they can discuss options without them having to go back via their gp.
it does sound like the procedure for speaking to surgeons does vary but pretty much everything does from health board to health board.
hope you get your appt sorted out.
and good luck to you other ladies too.
Lulu xx