BC Dx and Hodgkin's Disease Radiation Treatment

Hi, I had treatment for HD in 1985, I now have An over active thyroid and have put on lots of weight, my teeth are terrible I have had to spend £'s at the dentist, I have now been told I have a problem with one of the valves in my heart and a hole in my heart which they are saying I had from birth but I don't understand this as it was never noticed in any operation I had in the past. I got skin cancer under my arm how I don't know as it never gets the sun.  My point is that I have found this site only this week after talking to a lady whose brother had the same treatment as me all those years ago and he has similar problems, so I thought I would check on the internet if any one else had similar symptoms and I have been amazed, but  if the doctors know about this why haven't I been told as it would answer so many questions.  I feel that my own doctor can't be bothered with me when I go to see her but some days I find it so difficult to get out of bed.  i know that I should be gratefull that it has been over 25 years since my treatment but everything seems to be failing and surley we should be enjoying life now not having to fight to get through each day.

Hi,

I was diagnosed with HD in 1994 at the age of 33, Stage 1a, located next to my windpipe in my chest, and cured with mantle radiation.  Now, 17 years later, at the age of 50 (as of tomorrow) I've been diagnosed with breast cancer.  I developed a lump in the inside of my right breast over a year ago and the mammo, ultrasound and fine needle biopsy at the time were all clear.

This year, following mammo, ultrasound and core needle biopsy BC cells were found.  It is recommended that I have a unilateral mastectomy but because of lumps in my left breast that do not yet show up as dense tissue on the ultrasound (therefore not biopsied yet) it is also recommended that I consider having this breast removed.

After doing some research on the high risk of cancer to HD survivors I feel that a bilateral mastectomy is my best option.  Obviously, in light of the now cancerous lump in my right breast that showed up as "suspected glandular tissue" last year I don't want to go back for my yearly exam to find that the "suspected glandular tissue" in my left breast is cancerous.  I really believe that a BM is the way to go.

I plan on having DIEP reconstruction during the BM surgery.

I'm told that I will not be able to have radiation to my breast area because my breasts already show radiation damage and no more would be tolerated.  As to whether or not I will need chemo, that won't be known until the lumps and lymph nodes are removed and examined.

As upset emotionally as I am about losing my breasts I am going to keep fighting any secondary cancers that invade my beautiful body as I intend on living a happy life as long as I can!  

Thanks for your reply to my post Tara.

I love the imagery of skating through treatment.  I will keep this in my mind along with my positive attitude.

Kim

Hi

I was just sent this link because i started a similar post elsewhere, in the breast recon forum because i have had Hodgkin's radiation treatment in 1994 and was DX'd with DCIS in 2009 (exactly fifteen years after rads, just as is predicted nowadays). I had to have a BLM, TEs and now have implants. it has been 3 months since exchange surgery when i got the implants. and the implants are killing me - SO painful, feel like something is really wrong. My PS in Canada has not helped in terms of addressing these issues - tells me to do yoga, adn that in a year i will be fine. well, i am in so much pain that i cant wait that long. Not to mention that i HAVE to GET off the pain meds, they make my stomach sick and bloated and the weight gain etc.

 I was thrilled to discover this thread!! and all of you!! sorry we have to meet this way, bummer.

 if you read this and have implants post-rads for Hodgkins (which is much stronger then the rads for BC) PLEASE feel free to reply to me - would love to hear from you and how your -implants are working out. Mine are a big pain. are yours? if so, what did you do about it?

 Also, i just read about the FDA warning women with implants - they can cause a rare case of lymphoma!!! here is the link to the article:

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm240985.htm

The reason i bring this up is because I heard from my Dr that we are at a higher risk for other lymphomas down the road. So does that mean if I have had Hodgkins Lymphoma implants i am at an even higher risk for the cancer link due to implants? Does anyone know what other secondary cancers we are at a Higher risk for getting after rads at a young age?

 thanks for reading. looking forward to hearing from you and connecting with other HL and BCers! 

Gosh...I haven't posted in a while - life goes on!

katonine:  I also went the double route.  Had TE's for a little over a year.  Couldn't decide what implants to get.  Had the exchange surgery last August.  Still have discomfort.  I wear a sports bra to bed every night.  I seem to need them to 'stay put'.  When you lie on your back, I was told by the PS, they slide to the side - not much but it could be enough to cause discomfort.  I was also told that I was at a much higher risk of infection.  I did not have the 'nipple sparing' surgery but I wish I did.  I hate this whole thing.  It's like my chest is 'invisible'.  No feeling.  Miss that a lot!  I told my husband that someone could 'cop a feel' and i wouldn't know it!  My PS also said my skin is soo thin.  They were waiting for big issues so I'm lucky there weren't any.  Another curious thing - they are either colder or warmer than the rest of my body!  I can only tell if I touch them with my hands but it's weird!  As for the rare lymphoma from the implants,  hopefully, none of us will have to deal with that.  HL survivors are kinda new to the medical community but they don't do mantle rads anymore because of the long-term damage unless the chemo doesn't work.  My son was diagnosed 6 years after me - no rads.  My neighbor's daughter 2 years ago - no rads.  I think we all have other issues relating to the rads, but, we're here! 

Hi,  I had Hodgkin's disease at the age of 16 and upper mantle radiation at that time.  I had and BC on both sides, once in 2006 and once in 2007.  I had masectomies on both sides.  I am now wanting to do reconstruction, but my doctors and I are concerned about silicone implants and capsular constricture.  Has anyone had silicone implants with success after upper mantle radiation? ( I am aware of all of the other reconstruction options...I am just very athletic and thin, so the dr.'s can't find much fat for diep, tug, etc.)

I find it strange that I am the odd man or woman out that had HD and did not have the mantle radiation, but only had chemo and was given a combo of drugs that included Adrimycin and I ended up with breast cancer.  Not sure how they would explain me in the medical field.  I still believe that the medications/chemo was a contributing factor.  However, I am thankful for all the advancements in medicine in the last 32 yrs since my HD was dx. 

Has anyone from this group had implants and a lot of pain with them? I had mantle rads for stage 2 HD when i was 25 in 1994. Two years ago was diagnosed with BC in one breast. It was DCIS but I could not have any more rads,..like the rest of you here. and the onco strongly recommended a bilateral mastectomy due to high isk of recurrence. I had BLMx and then TE's placed. went through tissue expansion , which was horrid and painful. last Nov. got implants and have had a lot of nerve pain and chest pain since then. my pec muscles hurt. my chest hurts. the skin hurts. the whole area is a painful mess.

 want to get the implants out but every PS i see tells me it will get better in time.

TracieM - am happy you are okay cause that is awful that they didn't tell you to be monitored for BC!

anyone else from this group have similar experience and if so, what did you end up doing about it?

 Another question - am really curious about your energy levels, those of you who have thryoid issues post-HD. I am on thyroxin but I find I get REALLY faitgued. does anyone else from this group have fatigue issues? I have the kind of fatigue that when I get home from running errands I just have to crash on my sofa - literally cannot move cause am suddenly so tired. anyone else? I am just not convinced that thyroxin is doing its job in helping our radiated thyroids. does anyone take anything else that helps with energy and managing wieght?

 thanks for reading and answering. really helps to know this board exists. Hope ervyone here is doing okay and thank you all for posting and for listening! you are all a really tough bunch! 

5timewinner: I know this will be a difficult decision to make, and I pray you come out on top. Take care of yourself.

Hello... I am as well a Hodgkin's Disease Survivor.  I was diagnosed Stage IIB while pregnant with my second child December 17, 2002.  I underwent Chemo (ABVD) and Radiation and beat it (and had a beautiful healthy baby girl)...I recall clearly my Doctor saying that my chances for BC have increased having received mantle radiation.  I started going for regular mammograms when I turned 30.  I am 34 now, in June I went for my regular mamo and they found a 3mm unspecified tumor in my left breast - I was told it was too small to biopsy so they wanted me to return in 6 months for a follow-up ultrasound.  On December 2, 2011, they found an additional tumor adjacent to the 3mm tumor this one however is 7mm.  It was biopsied and has returned as Invasive Ductual Cancer - Clinically Stage I because we do not have the full biopsy report yet.  I have met with a surgeon at our Cancer Center - Roswell Park.  I will be meeting with a reconstructive surgeon on December 22 and my doctor again on the 29th.  I was given the options of surgical procedures but from what I understand we will not have a definitive treatment plan following surgery until the biopsy report returns as well as lymph node biopsy.  With the information I have now, I am opting on a Bilateral Mastectomy.  I am hopeful with a tumor smaller than 1cm but do worry about the "invasive" part of the diagnosis and what the additional biopsy report may say.  As I did with the Hodgkin's I am ready to fight again! I found all of your posts to be very helpful and no longer feel alone.  I wish the best for each one of you! 

hi all!

nadine: so sorry about all of this for you...

to everyone else - so sorry we all have to go thru this. 

katonine:  i have been fighting my docs for years about this fatigue.  i always feel ill.  have dx with cfs, fms and of course no thyroid function.  i never will feel the same.  it's a shame.

i had blm in 2009, te's were horrible.  had implants last year.  just had them replaced in sept.  it seems the ps i used for the first implants did not close the 'pockets' under the muscle and they were moving.  i went back to my original ps and now they look great and feel better.  those life-saving mantle rads don't want to be forgotten so we're reminded thru secondary cancers, thyroid probs, neck and back probs, fatigue, pain, joint probs (shoulders and back for me), etc....but - we're here.

now i have to decide on nipple reconstruction. decisions, decisions...

ColdenMom-visit the reconstruction boards you will find a wealth of knowledge there.

It really depends on the person but immediate reconstruction cuts down on the amount of procedures one would have.

6 cycles of TC (Taxotere and Cytoxin) wasn't a walk in the park but it was doable. I choose the immediate reconstruction route because I didn't want multiple surgeries. Once I was finished an declared NED I wanted to work on recharging my body.