Hodgkin's - mantle radiation - lungs / heart / breast cancer

Hey Rachel, my name is Kim. I'm also new to CSN and looking to chat with someone with a similar medical history about long term effects. I'm 38, married & work part time at 2 different hospitals (in the lab doing microbiology)and live in the burbs of Boston. I feel like my doctor's not on the ball and not sure how to deal with my extensive medical history. I was diagnosed with NHLymphoma in 1988, when I was 18 and in Jan celebrated my 19th anniversary of being cancer free. I also am scared about developing 2ndary cancers - the internet is scary but informative! I have chronic pain (back and hip) and my memory sucks. I don't know if it's from the chemo, radiation, morphine during the 10 or so surgery's I needed to fix the side effects of the treatments. I'm on percocet but take it very sparingly - somedays none at all and rarely as and many as 3 pills. I kinda hate the pain medicine and worry it's helping with the bad memory so I take it just to take the edge off. That's great you're athletic - I'm not very. I blame it on the hips but I could (and should) do more. My thyroid wasn't totally destroyed but I need levathyroid to supliment it. All the chemo (esp. the steroids) & radiation wrecked my hip joints so I've had multiple surgeries and got total hip replacements in my early 20's. My right's pretty good (although it's getting up there in age which scares me). My Left hip sucks. The replacement has been revised a ton of times & my pelvis was effected. During one of the surgeries (10 years ago) my sciatic nerve was cut (and dumb me didn't sue). I was put on an aggressive chemo regiment (MAYCOP-B)with intrathequal chemo to my brain, also. The cancer appeared to go away then came back a few months later in my Left hip. I got radiation for 3 weeks but it didn't seem to get rid of it. While on the waiting list for a room at the bone marrow transplant ward at brigham and women's I got maintence chemo (VP16 & ??). Then I had the BMT which involved tons of chemo & total body irradiation (they blocked my lungs). Anyway, hope to hear from you, be well!

janice123 said:

Hodgkins side affects of radiation in the 1980's
I had mantel radiation when I was 21. Even though radiation saved my life I have had a lot of side affects from it ! My age is 48 at 45 I have had heart stens at least 6 of them because of heart disease ! I do struggle with shortness of breath often. Had a lump taken from my right breast(non cancerous) this time ! These are all long term affect from this cancer we had at an early age...pretty scary ! I have a cardiologist, oncologist and a MD! All I can say is that we need to keep our self healthy and hope they can find a way to help us get through all the side affect from years ago ! I do feel your pain and by the way my oncologist focus always on my specific Hodgkins long-term risks he tell me that he will battle any disease with preventative screening ! Hang in there!

I was always fine until my 40's
Jan

Hodgkins side affects of radiation in the 1980's
I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (short breath, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

Thank you and kind regards
Mickey

HD_Mickey said:

Hodgkins side affects of radiation in the 1980's
I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (short breath, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

Thank you and kind regards
Mickey

long term effects of radiation treatment
Hi Mickey,
I had Hodgkin's disease in 1984 at age 28. I had mantle field (43.6 Gy) and abdominal (36 Gy) radiation.

I have two resources you might want to take a look at. One is a guide to long term effects based on what type of cancer you had and what type of treatment. You can find it on the internet at: www.survivorshipguidelines.org There is a PDF file you can download. I found it a great tool to use in talking with my doctor. It was also good to see that the symptoms I've had are most likely not imaginary. It has helped me learn what types of things to anticipate and be on the look-out for.

Another is a discussion group website for cancer survivors. They have lists you can sign up on where people email one another with questions and personal experiences. There are specific diesase lists, and one I have gotten a lot of information from is the "long term survivors" list. They are found at: http://listserv.acor.org There have been postings there from people all over the world.

Good luck with your search for information!
Kim

adamskia said:

long term effects of radiation treatment
Hi Mickey,
I had Hodgkin's disease in 1984 at age 28. I had mantle field (43.6 Gy) and abdominal (36 Gy) radiation.

I have two resources you might want to take a look at. One is a guide to long term effects based on what type of cancer you had and what type of treatment. You can find it on the internet at: www.survivorshipguidelines.org There is a PDF file you can download. I found it a great tool to use in talking with my doctor. It was also good to see that the symptoms I've had are most likely not imaginary. It has helped me learn what types of things to anticipate and be on the look-out for.

Another is a discussion group website for cancer survivors. They have lists you can sign up on where people email one another with questions and personal experiences. There are specific diesase lists, and one I have gotten a lot of information from is the "long term survivors" list. They are found at: http://listserv.acor.org There have been postings there from people all over the world.

Good luck with your search for information!
Kim

Mantle Field Radiation
Hi all.
I am new here but thought I could add what my long term affects have been. I had mantle field radiation following a bone marrow transplant in 1997. I have been in remission since. Here are the side effects. Lungs: asthma with some scarring. Heart: MI in 2004. You can find lots of information online. The MI, thank God, was mild but a great warning to stay on top of things. There is a lot of data about vessel changes on line. I get my mammogram yearly. See a cardiologist and an endocrinologist (thyroid destroyed). We are a new group of long term survivors and there will definatly be a learning curve. Good luck all!
Shannon

HD_Mickey said:

Hodgkins side affects of radiation in the 1980's
I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (short breath, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

Thank you and kind regards
Mickey

Follow up of late term side effects
Mickey,
You will have to be your own advocate, call a Pulmonary specialist for your lungs explain what you have been through, the same with a cardiologist. The hospital you went to orginally may hve changed there tune on long term side effects of cancer treatments. Set up an appointment and then explain any issues you have. YOu could ask the hosptial you had treatment for copies of your treatments and bring them with you on your visist and show them what you have been exposed too. You could go on line and check out different cancer hospitals
Good luck.

peeps4 said:

Mantle field radiation
Hi,
I am brand new to this site and I too have side effects from mantle radiation to my chest in the early 90's when I was 28. I also had abvd chemo for 6 months and 3 months of a another chemo with 6 weeks of radiation. My thyroid was destroyed too.
I had a reoccurence 5 years ago when I was 41. I had a stem cell transplant (my own) which has been successful. With 2 weeks of radiation My side affects are rapid heart beat and lung disease. Just go diagnosed with that. I am to start Pulmonary rehab in 2 weeks. I have had teeth issues due to the mantle radiation , thick and thin spit one of them dried up so more prone to cavaties gum line. I have issues with sweating properly I over heat like a bad car in the summer .

I just started to see a cardiologist. My heartbeat is rapid and high blood pressure.
My question is does any one have issues eating and swallowing foods. Due to spit issue I can't eat really dry foods and foods that create to much mucus make me choke ( feel like I am choking). I have seen a nutrionist and I am just looking for some food solutions if some one has any. I was cancer free for a about 12 years. Just keep getting your check ups.

swallowing
I have trouble swallowing sometimes, but it doesn't sound as extensive as the difficulties you are having. I remember it happening eating something like, for example, a big bite of a bagel.

Beverly

Hodgkin's Survivor
Rachel - are you still subscribing to this site? I just read your post today and feel like I could have written the exact thing.

40 years old
Hodgkin's at 20
Breast Cancer at 35
Training for a marathon

Let me know if you get this, please.

Thank you,

Allison

ameski said:

hodgkins 1988, breast cancer 2009
after beating stage IIB hodgkins with high dose (wish i knew #s) in 5/88 at age 19, i've been living virtually side-effect free except for chronic shortness of breath and fast pulse (90-ish resting) and as you said, rachel, compromised cardio performance in general. i do have some lung scarring and some kind of mild COPD according to the pulmonary function tests (pulmonologist has diagnosed asthma, which i'm totally not buying). also been told i have a very mild mitral valve prolapse. dry mouth and teeth problems have been issues, though relatively minor. my thyroid function has been normal, but we've been monitoring slow-growing nodules that are (so far) non-cancerous. in 10/2009, shortly after my 40th birthday and third baby in 5 years, my OB discovered a small breast cancer lump (and after testing, DCIS in other breast) that turned out to also involve 3 (of 14 tested) lymph nodes. so i had a bilateral mastectomy and just finished chemo (AC + Taxol). my drs are now looking at my old radiation records to see if axillary (underarm) radiation might be a possibility if they don't overlap the prior mantle field. apparently radiation there could decrease the odds of breast cancer recurrence. i was totally not worried abt breast cancer -- even knowing the increased odds -- bc i have no family history of it. being either pregnant and/or nursing since 2003 made getting mammograms difficult. had one in 2005 that was clean.

i'm glad to know there are others of us out there...hopefully we'll be out there a lot longer. feel free to contact me if you're going thru something similar...

Hi
I too was dx with HL back
Hi

I too was dx with HL back in 1990 aged 17. Had 6 months chemo.Not exactly sure which combo i had but pretty sure it ended OPP. Also had 4 weeks mantle radiation-again,not sure of strength of rads.Here in the UK you don't get your medical info given you.

Was dx with asthma about 6 months after finishing rads.Took it as gospel til it started to improve over a couple of years.I have always said it was lung damage from the rads but my dr was having none of it!I struggle with exercise that causes me to get out of breath,eg,running,skipping,and other hi-impact aerobic exercise. I suffer with palpataions and a fast,"odd" heart beat and chest pains.Had numerous ECG's,and even an EKO which they said "showed nothing significant".That was under the cardiologist at the hospital.I asked him if the mantle rads could affect me heart and cause problems and he sain no,but i'm pretty sure he just didn't wanna admit it incase of a law suit!Which i would NEVER do!

Next came the dental problems.Because the rads cross-sectioned my lower jaw,i suffer with dry mouth and teeth decayed very easily,despite taking good care of them.I was told this would correct itself 2 yrs after rads-it never did.

7 yrs ago i was contacted to say they now found that mantle rads for HL, to women under 30,in the last 30 yrs,put me at higher risk of breast cancer. I just had prophylactic bilateral mastectomies in Feb and i'm in the middle of reconstruction right now.I didn't wanna sit and wait for it to get me,as once it's in,Lord knows where it may spread to by the time you find it.

About 3 yrs ago my thyroid levels finally dropped enough to start on Thyroxine.I've been tested for yrs but my levels were borderline for yrs also.Thankfully the dr put me on thyroxine (50mg-or mcg-not sure!)straight away and that small dose stabilised my levels before i got huge! I lost the weight i'd put on.

I was told by my onc that due to my past treatments,i have an increased risk of breast, skin, thyroid and lung cancer.But they focused on the BC as that was the one that posed the most risk.

I (stupidly) looked stuff up on the internet too about side effects of chemo and rads for HL and scared myself stupid.Big mistake. Ignorance was bliss to an extent.

Now i've had my breasts removed,i guess my biggest fear is the possible heart problems.It used to be the fear of getting cancer again-and i do still worry-but the fear of dropping dead from a major heart problem,and not having the chance to say goodbye to my daughter and hub,is the worst fear. Especially as the cardiologist i saw has discharged me after finding nothing on the EKO! I know my heart is not right but how can you convince someone who doesn't believe their is a link to my rads??!! All he saw was a 'healthy' 36 yr old woman!

Hip problems have been bad,as have my knees and now my shoulders are joining in the party! I didn't know this could have been caused by my treatments until i read it on this site,but now it makes sense.I was tested for rhumatoid arthritis a few yrs back-it came back negative.The dr said it could be the start of osteo arthritis but wasn't sure.I'm somewhat relieved in a way that it may be from my treatment,as at least i know now.Walking long distance is bad for my hips and knees.I do TAE KWONDO twice a week and that keeps my joints moving,though it can cause stress to them at times.I do have to wear knee straps when my knees are bad


MY JOINTS CLICK REAL BAD!!!!!!!!!!!!!

Does anyone else suffer from clicky joints??????
My toes,ankles,feet,knees,HIPS!(thats gross),shoulders and elbows. Even my back has cracked before!oh and my jaw too!

ummm.....i think thats about it
No late effects clinics in UK. They seem to deny any involvement from chemo/rads,except my onc. My family doc hasn't a clue about side effects so when i go with a problem,he just treats it as being nothing.How can a healthy 36 yr old possibly have heart problems??? or arthritis????? of lung malfunction??? I wish they were better informed by the onc's about side effects.....

netgibas said:

Hodgkin Survivor
Hi Allison-

I am new to the site and was wondering if you heard back from Rachel. I also felt I could have written her post. I was diagnosed with Hodgkins when I was 25. I am now 48 and have had thyroid issues since I was 30. First Hyper, now Hypo. Back in Novemeber 2009 I had a mole removed due to skin cancer. It was in a weird place, in my armpit. The doctor mentioned that those with compromised immune systems will get skin cancer in strange places. I also try to stay active and worry about the heart complications and breast cancer.

Do you have issues with doctors not really listening to you? I realized I have to be forceful with the doctors when they start to to look at blood results ranges only. They assume everyone fits within the thyroid ranges but I know at what level I feel the best. In fact I have left two doctors because they refused to adjust my medication because they felt the numbers were OK.

Anyway, I hope thing are going well for you.

Jeanette
(Virginia)

Hi Jeanette,
was your skin
Hi Jeanette,

was your skin cancer noticable to you? I mean,did you find it yourself? My onc told me i was at increased risk of it and im always very careful in the sun,but i didnt realise they could come up in obscure places like your armpit!

I have just had a preventative double mastectomy as ny risk of BC was very high due to the mantle radiation. It was a constant worry and since being contacted 7 yrs ago by the hospital to say all women who had mantle rads for HL in the last 30 years(under the age of 30) are now deemed high risk,i decided to be proactive. Im glad i did as i've heard from women on here who have developed it since.Some on the similar time scale to myself,give or take a few yrs. for me,it was a case of when not if and i was so scared every yr at my mammogram and MRI scans.

I will get my hubby to check me out for moles also as its not something i really do but i guess i must.

netgibas said:

Skin Cancer
Hi-

Every so often I would wake up and there would be a spot of blood on the sheets. I sleep on my right side with my arm under the pillow. This was the side that the skin cancer was on. Anyway it took a while until I finally figured out where the blood was comming from because I get in the shower 1st thing when I get out of bed and I would wash the blood off the mole. The mole did look redder than other moles. Finally one morning when I was in the shower the mole was sensitive to washing so that was the 'aha' moment of where the blood was coming from. Since the time frame between blood incidents was long I just thought I was scratching myself when I slept. Once I figured out that it was the mole I went to the dermatologist and it was removed and sent to the lab. It came back positive for basal cell carcinoma and I went back and they cut out the area around where the mole was and it was sent back to the lab. What they were looking for is if the edges of the cut area had cancerous cells or were clear. If there were cancer cells they would have to go with a larger diameter until the edges where free of cancer cells.

Take care & keep in touch.

Jeanette

wow....well thanks for
wow....well thanks for sharing that. I will keep a closer eye on my skin.Its not something i think about alot as you tend to associate skin cancer with the sun and repetitive burns etc.....

Do you know if the skin cancers (from the mantle rads) are likely to just appear in the sites that were irradiated?? or can they appear anywhere on the body?

certainly food for thought.
thanks again

Kay