Hodgkin's Survivors/Secondary Breast Cancer

DeborahC

I found this article (that I also posted on Facebook) for those of us with HL and BC.

http://www.ncbi.nlm.nih.gov/pubmed/20975072

"Women with HL may survive a subsequent diagnosis of BC, only to
experience significant excesses of death from other primary cancers and
cardiac disease. Greater awareness of screening for cardiac disease and
subsequent primary cancers in patients with HL-BC is warranted."

Nothing we don't know - but the graphs were interesting - our survival rate really plummets after about 15 years.

Still_Snarky

I reopened my blog documenting my prophylactic BMX and reconstruction. fair warning: there's tons of pictures. please feel free to contact me through the comments section if you have any questions about my experience.

http://still-snarky.blogspot.com

kimag

hi all, i am new here and not sure if fitting for this forum as i had non hodgkins lymphoma still treatment was similar, 7 courses of chop and high radiation to the chest - left side. It has been 18 years from the treatment and now i have been diagnosed with DCIS , in a week i have my surgery and i am scared ... i hope after  surgery it will still be DCIS... my surgeon does not want to do prophylactic mast for right breast and i wonder how much should i press her to do so... i have a meeting with her on monday. I am also at higher risk of heart disease as it was not protected during radio, recent ECHO was ok, would that mean so far so good? What should i watch for? can anyone share what should i be tested for? recent ct scan showed scaring in the lungs and description said most likely due to radio, no other feedback or advice so now i wonder how should i follow up... i have moved from my home country where my NHL was treated to Canada and since i am not under any oncologist care or follow up, everywhere i asked i heard after 18 years i am considered cured and not to worry!! I had mammogram done only because i insisted on some testing for breasts, i feel like i need to be my own doctor and not sure whom to trust where to go. I have 3 little boys, the youngest soon turning 1 year and as all of us I want to do all i can to be for my boys as long as possible..

If i posted in wrong place please kindly direct me to more appropriate place, this forum is a great place for information

DeborahC

Hi kimag, yes of course you are in the right place.  There are many of us out there in your situation.  This board is not very active.  There are Facebook groups where more people share info  on long term lymphoma problems (unfortunately the one I am in does seem to limit it to Hodgkin's).  We all have the same problems - breast cancer, hypothyroidism & thyroid cancer, lung problems, heart problems, muscle problems, basal cell carcinomas.

You are probably cured from lymphoma, but the late effects of radiation continue.  

As far as tests - mammograms/MRIs, stress tests (for heart), blood tests (esp thyroid function), a thyroid ultrasound, skin cancer screens are what I get.

MSKCC has some resources on their website

http://www.mskcc.org/magazine/may-2009/late-effect...

kimag

Deborah thank you very much for your response, I do not have thyroid any more, removed in 2007 (cysts developed), do you still get mammograms after mastectomy? Is echo not enough to monitor heart and I should request stress tests? I found there are way more information or groups for Hodgkins then for Non_Hodgkins...

DeborahC

No I do not get any kind of mammogram or breast MRI anymore.  My hematologist recommended a baseline echo/stress test at about 20 years out from radiation.  I don't know how often I will repeat this - probably only if I am having problems.  Many people in the HL Facebook group have had valve replacements - but they all seemed to have serious symptoms for years.  I was having shortness of breath before one of my surgeries, and they also did a cardiac CT (which was normal). 

 I wonder why there are more Hodgkin's support groups - most of our problems seem to be from the radiation, and I would imagine NHL had just as much.

kimag

Deborah, thank you again, at least I have one response - from you it is all very scary, the upcoming mastectomy, decision if I should press to have the other breast removed as well...  and fear what else will be harmed next after radiations, i cannot sleep and worry a lot... trying to find others in similar shoes, trying to find a follow up care

Gr8full

Hello!  I was diagnosed with HL 29 years ago just a few months before my 15th b-day.  Had chemo (ABVD, I think) and radiation.  Last month  was diagnosed with DCIS...had a lumpectomy with clear margins.  Am now preparing for a bilateral mastectomy. Also have had some mild pain in my ribs over the last 8 months that I'm a little concerned about.  I didn't realize until now about the high risk of secondary cancers for HL survivors...since the DCIS dx I have been searching the internet and am just learning about all the risk factors. Wow!!  No idea!  I vaguely remember when I was a kid that my mom had to sign release forms regarding future risks of secondary cancers but that was nearly 30 years ago and it was not on my radar at all...until now!  I haven't had any real follow-up done over the last couple of decades and actually just kind of stumbled onto this DCIS dx so I'm just realizing that I have to be more pro-active.  

Moderators

Hi Gr8ful, sorry to hear about your DCIS diagnosis and good luck with the bilateral mastectomy.

Marisa Weiss has a whole blog dedicated to risk factor reduction if you are interested in reading it.

Lower your risk

Well done with deciding to be more proactive!

Kimag, wishing you the best of luck with your upcoming mastectomy also. We really hope your worry subsides!

Thinking of you both,

The Mods

Gr8full

Thank you!!  

lifelover

Hi there.  I'm just returning to these boards after a long absence.  Apologies for not being here but I am back in "providing support" mode again.

I feel amazing most of the time.  I have problems related to my high dose rads in 1995 but so far so good.  I get any worries checked out by my GP.  I get referred to a specialist whether it be cardio or ENT if I need to.  I am under the care of a cardiologist and now will have regular echocardiograms to check for problems (I highly recommend this).

And yes, I am 4 years post diagnosis and no evidence of disease!!!!    

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Hdsurvivor

Hi life lover,

I was diagnosed with Hodgkins lymphoma in 1985 treated with mantle field radiation and diagnosed with breast cancer in Aug 2014, 29 years after initial treatment. I have had bilateral masectomy and I am on tamoxifen.

Like you I am also in the UK

Moderators

Hi Hdsurvivor,

Welcome to our Community. Unfortunately, this thread hasn't been active for quite awhile, so you may not receive a response. But, please continue to post, and let us know how you are.

Warmly,

The Mods

lifelover

Hi Hdsurvivor,

Sorry to hear you have joined us There is a Facebook (private) group called Breast Cancer After Hodgkins. Please come and join us there. I will send you a private message with more details.

Kim

lulu2533

I too had HL in 2001. Treated with chemo and rads. Waiting for my bmx on May 19. Didn't realize how many of us there are!!

Hdsurvivor

There does seem to be quite a few of us! Good luck with your masectomy next month,are you having reconstruction?

lulu2533

Thanks HD. Yep, tissue expanders put in at same time. I see you just had some surgery...hope you are doing well.

Hdsurvivor

Hi, yes I have just had my nipple reconstruction last week, not too much pain. I get the dressings off tomorrow so will hopefully get to see them soon. Then the tattooing will be done in about three months time.

phlyfisher

I was diagnosed with Hodgkin's in 1975 (age 18) and treated with mantle irradiation (~36-40 Gy). 2 years later I had disease extension outside the treatment field and was treated with "inverted Y" irradiation. I developed radiation heart disease/carotid stenosis/subclavian stenosis over time due to the RT. Received a pacemaker 11 years ago and CABG/TVR/pericardiectomy 9 years ago. I retired my medical practice 8 years ago because of theCHF/restrictive cardiomyopathy. My screening mammogram a year ago was normal. Recently I noticed a "spring pea' in lateral right breast. The 5mm nodule was removed last week by vacuum-assisted needle biopsy. The biopsy came back late last week as IDC grade I, ER+/HER2-. I see the surgeon and medical oncologist in consultations this week. I'm concerned that even though the tumor was only 5mm my only option will be mastectomy because of my previous, high dose RT.

lifelover

Hi phlyfisher,

I'm sorry to hear about all of your problems. The Facebook group is called Breast Cancer After Radiotherapy for Hodgkins if you are interested in joining.

I opted for a mastectomy but I didn't have to choose that. I had options. I hope you too have options.

Good luck at your appointments this week and let us know how you get on and how you are feeling.

lyn3182

I was diagnosed and treated for Hodgkin's IIIB in 1991 at the age of 19 and had MOPP, ABVD and a month of mantle radiation. I'm lucky enough to live in a city with a late effects clinic. A couple weeks ago, I got sent for an MRI, and at around the same time ( actually about a week before) I started having pain in one, then both breasts. No really painful pain, just more than an ache, and in very specific spots. Not period related as I've not had one of those for a long time. I received the news that the MRI showed a lump, pretty much where the pain is, and the Dr. could feel it on exam. It's tender when pressed, about 1 cm., but not painful. Now I am waiting for a call from the surgeons office for a biopsy, and am left wondering. I hate waiting.

I realise this is a dumb question for a breast cancer forum, but has any post-radiation patient had a lump and a bad MRI that turned out to be non-cancerous? My Dr gave me a very waffley answer when asked. Am I silly to hope, given my history, that this could be a big fat nothing?

Thanks.

Ddw79

Never silly to hope for the best. Even I do it once n awhile. I have a very close friend in your exact situation. Many blessings and keep us posted

lifelover

Hi lyn3182.

Hope for the best. But if you get bad news please come back here for support. Also, there is a Facebook page for Hodgkins Survivors who have breast cancer and it's full of helpful information.

I hope you get the all clear.

cassylou

Hi everyone,

I was diagnosed with HD as a 19 year old in 1995. I was treated with upper mantle radiation. Fast forward to April 2015 and routine screening found 2 tumours in my left breast. I'm undergoing chemo and I only have 2 weekly taxol treatments to go. I was offered genetic testing for BRCA when I was diagnosed and have since discovered that I possess the mutated BRCA2 gene. I didn't stand a chance really

I'm scheduled for my BMX and reconstruction and ovary and Fallopian removal next month. I'm glad I've found you guys. I've also sent a request through to join the Facebook group.

Cass x

Allyp71

I was diagnosed with Stage 3 HD in 1995 when I was 24 and underwent 8 months of ABVD chemo, no rads. In 2013 I had DCIS, triple negative, grade 3 tumor. I was also told that there was isolated tumour cells but the RO and MO decided not to do any rads or chemo, just surgery. I underwent DMX with immediate reconstruction and just finished my 6th surgery in October. As I didn't get any rads for my HD, I'm thinking that I might be BRCA2+ since my Dad was tested positive for it. He passed away in 2014 from prostate cancer and had given his oncologist consent to be genetically tested when he was doing his clinical trials. After he passed, they got the results and my Dad's oncologist called me and informed me that my Dad had the BRCA2 mutation gene.

It's hard to determine if my HD and BC is tied together because of the chemo treatment or because of the gene.

I was just told recently of the genetic results so its still fresh. I never made the connection that HD and BC is also closely related. I feel like I'm a sitting duck since I had no adjuvant treatment for my BC and if I have the BRCA2 mutation, its like a ticking timebomb.

FYI...I sent a FB request to join the private group.

Thanks for all the wonderful information. My head and brain is working overtime

cassylou

hi Ally,

I too had HD. Mine was diagnosed and treated with rads in 1995. I was diagnosed with triple negative breast cancer earlier this year. The docs were fairly confident that the cause was my radiation treatment in 1995 but decided to do genetic testing anyway. Surprisingly to us all, it came back BRCA2 positive. Since then my mum and uncle have tested positive and various other family members are being checked.

This thread isn't vary active. It might take a little while for someone to activate you in the Facebook group, but once they do, it's very active.

If you have any questions for me through, please just ask away.

Cass X

Allyp71

Hi Cass,

Thank you for responding back.

I am going for an ultrasound on Dec 23 as I noticed a lump after my last surgery in November and my PS wanted to check to make sure it isn't anything to be concerned about. Hoping its a fatty tissue or something since the DMX and reconstruction, everything is lumpy anyways

I will wait and hope I get accepted into the FB group.

Thx again!

Ally

breathe

Hi. I'm another HL survivor and bc survivor. CHemo and radiation in 1990 for HL and chemo plus radiation in 2015 for bc. I had proton radiation to spare heart and lungs from additional exposure. I hope someone can add me to the group on Facebook. I don't see a link.

Thanks!

lifelover

Hi breathe,

Sorry I haven't been able to respond sooner but I've been off these boards for a break to work on my anxiety issues

Did you get access to the Facebook group?