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

RachelF
Posts: 3
Joined: Feb 2008

I'm new to CSN. I'm looking for input from 35-40 y.o. female(s) who have similar background to mine to exchange information, knowledge and experiences with long-term side effects. I was diagnosed in 4/1988, had a splenectomy and laperotomy, and 3+ months mantle/abdomen radiation. One of my lungs was radiated for a month before being blocked. I've never sought out anyone to share this with, but as I am more aware of possibilities of 2nd cancers and heart disease issues I would like to increase my awareness. I'm very athletic and since remission have always struggled w/shortness of breath and compromised cardiovascular performance in general. I have zero-tolerance to spicy foods (mouth pain). My thyroid was irradiated and is nonfunctional so I take synthetic hormones but still have extreme sensitivity to cold, v. dry skin/hair esp in winter, and I believe I have lower energy than I should considering my healthy habits (plenty of sleep, great nutrition and physical activity). I'd also appreciate any advice about finding an oncologist who could focus on my specific Hodgkin's long-term risks (lymphoma, lung, thyroid, breast cancers). Should I let that MD refer me to a cardiologist for preventative screening? Many thanks.

ZoeandFloyd
Posts: 2
Joined: Feb 2008

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
Posts: 3
Joined: May 2009

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

HD_Mickey
Posts: 2
Joined: Jun 2009

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

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Mickey:

Congratulations on your survivorship, first and foremost! And welcome to the site!

Regarding research and such, I believe that this is a rather new topic for researchers, as we are only recently becoming long-term survivors such as yourself in large numbers. The research is beginning to happen, but, as I understand it, and you will understand if you know much at all about science, it takes years to collect ample statistics, so the research is in its infancy.

I would advise, however, that you look at ACS' ezine, Curetoday. I get the thing hard copy, so it may take some technical dexterity to get to the exact articles, but go to www.curetoday.com and search around for survivor information. They have some very interesting articles about what is being discovered and what plans are for future study. (While you are at it, have a look at the articles in the issue previous to this one regarding genetic/epigenetic research: a light, a very bright light, in the darkness!).

Again, congratulations on your survivorship.

Take care,

Joe

adamskia
Posts: 1
Joined: Jun 2009

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

smolloy
Posts: 1
Joined: Oct 2009

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

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Shannon,

Just curious, how did you come to discover your late effects?

Paul E. (Hodgkoid2003)
"There are more of us out here than you realize."

peeps4
Posts: 7
Joined: Nov 2009

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.

bgdbgd
Posts: 3
Joined: Nov 2009

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

Deb17910
Posts: 12
Joined: Oct 2010

I too have bad swallowing issues and always wondered if it was from the RADS treatment. I have never gone to the DR for it. But I can choke on almost anything if I don't chew it till its mush. I had severe, severe throat pain during my treatment to the point where he had to stop and give me a break for a few days. I couldn't even swallow ice cream or pudding, it was bad!! i also have been dx'd with mitral valve regurgitation, also due to the radiation. I take meds to control my heart rate which in turn controls the regurgitation. Sounds like you need a cardiac workup. An Echo to be exact. Curious to know, why you had radiation a second time. I thought once you had radiation you couldn't have it again.
Sending the very best your way
Deb (HL-1994)

peeps4
Posts: 7
Joined: Nov 2009

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.

scottwynter's picture
scottwynter
Posts: 3
Joined: Jan 2003

I am hesitant to post this, but here goes.

I was diagnosed with Hodgkin's in 86, and had a splenectomy. I underwent 3 months of mantle radiation. July of 2007, I was diagnosed with Stage IV colon cancer. I would be surprised if the radiation treatment I had in 86 was not in some way related to the colon cancer. I urge all of you to get a colonoscopy regularly. I am now cancer free (again), but it would have been much easier had it been detected earlier.

Allison2010
Posts: 2
Joined: Apr 2010

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

netgibas
Posts: 2
Joined: May 2010

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)

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

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
Posts: 2
Joined: May 2010

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

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

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

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Kay,

I just went to the dermatologost for a full body scan this week. The Doc examined every inch of my body, even my scalp for anything suspicious. Nothing was found and I will return in a year or sooner if need be. I, like you, had mantle radiation 20 years ago for Hodgkins. I did have a keratosis on my neck that she used liquid nitrogen to take off. The scan isn't any type of test, just a visual from the doctor!

Cathy

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

hi Cathy

so it may be worth my while in paying to see a dermatologist and getting them to give me the once over? Not sure i'd get it on our health system without being reffered and to do that i have to have a visible problem in the 1st place.

Glad all was well with you. I'm sure paying for a check over once a year will be money well spent.
Thanks for that

kay =)

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Kay,
Luckily, I just had to pay a copay with my insurance to go to the dermatologist. I dodn't know how your health system works but I would hope you would be able to go as a precautionary measure based on your history. Sometimes it is worth the peace of mind it gives us survivors when we proactively do something. Check that one off the list of worries for awhile. I know you know this first hand when you checked off Breast Cancer...done!

Cathy

ameski
Posts: 1
Joined: Apr 2010

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...

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

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.....

Phoenix10's picture
Phoenix10
Posts: 47
Joined: Dec 2009

HL in 1991 at 17.

You can count me in for some of these wonderful side affects. I am sooooo glad to finally find someone else with the joint problems. Yes, I can crack just about any joint just by moving, walking or moving my jaw.

Back in '93, I was finally in remission and then started limping. Then, came a bacteria infection in my left hip femor joint. The top of my femor bones are both affected where they are more square shaped than circular, by a loss of blood circulation. This has caused a loss of motion, a pelvis slant to relieve the weight from the joint and now I'm experiencing back pain.

The docs are just accepting this as is and always told me I'd need a hip replacement one day. I'm planning to see a chiropractor to see if they could straighten my back/pelvis some. Yes, its a form of arthritis and a side affect of chemo, including predisone.

Also, I had trouble catching my breath recently while walking/exercising. Had all kinds of heart tests and everything was normal. However, I know I have limitations from the chemo and radiation because this was not extreme speedwalking.

What's a girl to do? Pilates here I come...

Lucaja
Posts: 1
Joined: Jun 2010

Hi I'm new to CSN site. I too had mantle radiation (they called it total nodal rad with Cobalt) at the age of 25 back in 1979. The last 2-3 years have been awful. I am hypothyroid & have energy & stomach troubles for yrs. Now I have esophogeal problems that they can't do much about. They say my vagus nerve was injured from the rads. I never know what to eat. I get such reflux that it burns my throat that I can't even talk. Take some mixture they gave me to drink that has Lidocaine in it to numb the pain. Now the only thing they say might help is getting some drug from Canada. They call this whole throat mess Crest disease. Anyway have alot of lung problems Because of it. I aspirate, I'm short of breath. Had pulmonary tests = mild COPD & severe restricted disease. The restrictive disease is due to bone problems. Just had back surgery for 3 compression fractures. Had a mastectomy last year. Have a pre-cancerous thing in my stomach. And have a few heart issues (ventricle enlargement. fast heart rate & very low blood pressure). I tried looking these topics of side effects on the internet but couldn't find much. Guess we're in a group of our own & just need to support each other. Thanks for all your info. GOOD LUCK to you all!

Phoenix10's picture
Phoenix10
Posts: 47
Joined: Dec 2009

You're very brave and have endeared a lot. I started the chiropractor care and am finding that it works and its amazing how the spine can affect so many things.

I'm finding this to be a great site for learning and support too.

2manyrads
Posts: 16
Joined: May 2010

As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and children were given radiation treatments that would later result in many developing both cancer and radiation-induced heart disease.

My mother—as no doubt many other mothers—held me on her lap, to make it easier for the radiologist to administer the x-rays. The cancer she developed from her own exposure to the radiation that passed through my 5 month old body to hers, was one of the causes of her death many years later.

After surviving leukemia at age four, I spent the next thirty years in and out of hospitals for illnesses that seemed to have no identifiable cause. When my mother was diagnosed with a cancer the oncologist told her could only have come from exposure to large doses of radiation, she explained she had never been in that situation even as an emergency room nurse at Bellevue Hospital in Manhattan.

After further questioning from the doctor she remembered our experience with x-ray treatments. The doctor said he’d studied in med school that erroneous diagnosis and x-ray treatment. He said, I assume your son died a long time ago since he received the bulk of the ionizing radiation. No, she told him. My son has had a lifetime of serious illnesses, including being placed at one time under hospice care for over four years.

The doctor told her to call me and for me to get to an endocrinologist immediately because I most certainly had thyroid cancer. I did as told and the endocrinologist said he could see from across the room that I had an abnormal thyroid. It turned out to be Stage 3 metastasized thyroid cancer. After a thyroidectomy and radiation treatments (ironically to treat what had caused the disease in the first place) I slowly recovered.

I take synthroid that is carefully monitored for correct dosage and the devastating symptoms caused by my thyroid cancer have been controlled.

I am currently working on a book about the history of radiation for benign conditions, especially on children, and would be very interested to hear other’s stories.

My Best to you,
Ron

Phoenix10's picture
Phoenix10
Posts: 47
Joined: Dec 2009

Wow, we really take modern medicine for granted. I never would have thought that a mother would hold a baby during a scan but that just shows how far we've come. Going through my husband's grandmother's things, we found a glass syringe. Ouch! I can't imagine somone using it.

Thank you for sharing your interesting story and best to you on the book. I have a friend of a friend who experienced cancer 5-10 years before me and they fried her. She's had a double lung and kidney transplant because the radiation and/or chemo was so strong on her organs.

I'm taking Synthroid (generic) too, and my dosage has been reduced over the years. Never expected that.

God speed!

mickey25
Posts: 3
Joined: Sep 2010

I'm new to this site and glad I found it.
I had mantle radiation in 1985 when I was 22. I had a total of 12 to 14 weeks. During the first six- to eight-week round, I had tingling in my spine when I looked down. Oncologist said he did not mention this side effect because it was so rare. Just four years ago that was the clue I gave to a neurologist who was trying to figure out how I had gotten nerve damage in my left leg. He inquired about an injury or accident and all I could think of was the radition. (see additional info on this in long-term side effects posts on this site.)
Since the radiation, I have had many dental problems because my mouth is dry. Thyroid was removed in 2004 after a biopsy showed it was cancerous. It had been hyper and hypo before that. After it was removed it was found to not be cancerous.
Had basal cell carcinoma under a breast in 2006 or 2007. Problem resolved by removing spot with clear margins. Continue to see dermatologist routinely for full body checks.
Heart issues began about eight years ago. I have additional fluid around my heart and some scarring from the radiation. Have history of being short of breath with a rapid pulse.
In January 2009 was diagnosed with breast cancer (ductal carcinoma in situ) in right breast. had a scare the year before in left breast, both were found during annual mammograqms. Opted for bilateral masectomy and reconstruction as I was not a candidate for more radiation.
Genetic testing revealed I do not carry a cancer gene, but I did have elevated tumor marker for ovarian cancer. Had complete hysterectomy in April 2009. During that hospitalization, left lung collapsed from fluid build up. This happened two more times (second time was so gradual that only symptom was fatigue) before having procedure (pleuradesis) to make it impossible for my lung to collapse. Continue to have some fluid there which has appeared cancerous on PET scans, but is not cancerous. Oncologist has determined we will quit with the PET scans and monitor situation. She said she has another patient with similar background and same problem.
About four years ago was diagnosed with radiation induced plexopathy in left leg as a reuslt of the radiation. EMGs show both legs are affected, but I am not noticing any problems in the right leg. It is not painful. Have found physical therapy to improve balance and help with walking. No improvement to drop foot and weak ankle.
Saw an ankle/foot specialist this week and he recommends a surgery to move tendon from arch area to outer side of foot to help it lay flat when I walk and keep it from turning inward. Foot/ankle problem has been this severe for about two years and specialist does not think I can rebuild those muscles.
I had been having annual cancer checkups and I credit that with detecting the other problems. After breast cancer I am back to seeing an oncologist more frequently.
Am concerned after reading about the colon cancer. I have turned down colonscopies because I just don't want to do it and I thought that since I've had all these other problems, perhaps I could be spared that one.
Thanks for sharing. Look forward to learning more.

micheleb
Posts: 3
Joined: Sep 2010

HI everyone
Im new here and I just posted about my cancer recovery and mantle rad side effects
on another thread. I am hoping to correspond with other survivors. Sometimes the
symptoms freak me out. Right now, I am having a weird sensation in my chest. I feel
almost water-logged. Has anyone had that?

tvogel
Posts: 3
Joined: Apr 2011

Mickey... I find your blog sooo interesting. Along with two breast cancers, possible thyroid cancer and a stage zero (luckily) skin melanoma, last January (15 months ago) I began feeling a weakness in my leg. By March (2010) I was no longer able to stand on my tiptoes on my right foot... my ankle collapsed. Is this what you're experiencing? I have been to the head of the neuro oncology department at Northwestern Hospital (Chicago) and the neurology department at the Mayo Clinic in Rochester. After a total of six MRI's and twice being shocked and poked with needles, no one has found any reason for my ankle. As with yours, there is no pain. Good grief... as I get older, I keep wondering how many more issues I can continue to beat!

Would love to hear an update from you- Tami

IbeatittwiceUcan2
Posts: 1
Joined: Feb 2009

Hi-
I have a similar story would like to compare notes.
It seems like we both have very similar stories or symptoms.

After beating stage 3B hodgkins (at the age of 21 in 1991) with cemo Mopp & ASDV and a month of full mantel radiation, I've been living with weird side effects. A non functioning thyroid & spleen, dry mouth and teeth problems along with memory problems sever cramps all over my body (depending on the day).

Has anyone experienced severe pain in neck/glands and throut. This pain comes and goes. there is at least 4 months between re-occurance. I went to ER where they performed cat scam (oops) just to turn up nothing but a big fat bill. I have had this at least 3 times in the last yr. It lasts for a week at a time. It is so painful I cant nove my jaw and I have actually cried.
Anyway-
Was diagnosed with stage 3 BC in Jan 2008. Underwent 6 chemo sessions.
Went thru a mast and reconstruction. They found calcification lymphnoid
in my lung/chest. They said they would monitor it but they have forgotten about it. They stopped doing blood work on my 1 yr and 8 months after the BC. I find this hard to take. They are really not doing no monitoring except a yearly mamogram. Im looking for a Dr. in the Cleveland area that deals with and takes late term radiation/chemo seriously and has some knowlege of it.

Tried to find others going thru a second cancer caused by chemo/radiation. It seemed as if I was a rariety but after reading these posts its very common to get a second cancer from the chemo/radiation back in 1991.
My big concern now is my blood pressure in up and down and my heart races after doing a minium activity like walking up 2 flytes of stairs despite my 6 months or working out. After reading these posts and your post Im worried about heart problems. Does anyone have any info to share?

I also have some lung scarring but have never been told that I should see a Dr. for my low cardio function.
thanks
jacqui

tvogel
Posts: 3
Joined: Apr 2011

Hello,

We recently moved to the Chicago area, and by accident, I found Dr. Didwania who runs the STAR Program at Northwestern Memorial Hospital. It's a program for adult patients who had cancer as a child. You may want to google it as she's very experienced with our post-Hodgkin battles... She also treats many people throughout the nation, and possibly around the world.

I had Hodgkin's when I was 18, in 1982. Since then, I've had breast cancer twice, thyroid (which they never determined if it was cancer or burned scar tissue) and most recently a skin cancer melanoma.

I also have a very rapid heart beat and get tired quite easily. My cardio is basically gone. I don't know if that is a result of the mantle radiation, but reading that many others have this same symptom, I think it may be. My most current "struggle" is that I have lost strength in my legs and on my right ankle, I can no longer stand on my tippy-toes. I still walk and I still head to the gym, but it's more of a struggle than it should be. Again, I don't know whether or not that's a side effect, but I sure find it interesting that so many of you have symptoms the same as me.

Good luck-- Tami

RachelF
Posts: 3
Joined: Feb 2008

hi Tami and everyone else who has posted.

This is the oddest thing. I just did an internet search for "radiation + lung capacity + hodgkins" and found myself right back here at my original post on CSN!

At the time I was so sad and overwhelmed about long-term side effects and second-cancers I was scared away and never came back. Now I'm glad I did.

I often feel like my lungs and heart simply don't 'perform' as well as I'd expect given my training. However after finding CSN again I'm appreciative that I survived HL and can find a supportive community online. The entries you all have shared is wealth of information and will help me manage my long-term issues more effectively and proactively.

My radiation/oncologist at Georgetown University Medical Center gave me a thorough run-down soon after my first post in February 2008 and he forwarded his summary to my internist.

She has suggested screenings for thyroid cancer (via sonogram) and colon cancer. Not a bad idea, as I had been solely focused on breast and lung cancers.

Question: how do I monitor for heart disease?

Kathy S
Posts: 4
Joined: Sep 2011

My husband has late effects from mantle field radiation for Hodgkins in 1980 when he was 21. Sometime in the 90s, he needed thyroid replacement. He had a high pulse rate as long as I remember (we met in 1988).

He was plagued with edema that he was told was due to his blood pressure medicine and was referred to a dermotologist (!!!) sometime around 2000-2001. Next thing a heart murmur showed up and his regular doc scheduled a follow up EKG 6 mo later which showed a left bundle branch block. In 2002 he scheduled an echocardiogram and referred him to a cardiologist. The cardiologist gave him the bad news - aortic valve stenosis - he needed his heart valve replaced. During surgery, they used a scope to look at the mitral valve and determined it needed to be replaced as well. Severe calcification from radiation damage. After surgery, his lungs went into shock, they didn't realize he had pulmonary hypertention. He nearly died, but was saved by nitric oxide treatments which we were told only work 50% of the time to reduce the pressure.

I thought the valve replacements would open up his blood flow and he would improve. He did, a little. Right heart failure and pulmonary hypertension were the issues after surgery.

In 2005, he sufferred from arrythmias during which his heart would stop and he would have a twitchy faint that looked like possibly a seizure. He needed a pacemaker, which was installed. He had atrial flutter, for which he had cardioversion treatments 3 times and is now on the drug betapace.

Now in 2011, he suffers right heart failure and pulmonary hypertension. I am unclear on whether the pumonary hypertension was caused by radiation treatment or the mitral valve stenosis. He suffers from anemia which seems somewhat mysterious in that it is not constant, so this points to likely GI bleeds which are aggravated by the blood thinners (for the mechanical heart valves).

Right now he has irritation in his esophogas which probably has been bleeding enough to partially cause anemia. The two mechanical heart valves create turbulance that breaks red blood cells that also contributes to anemia.

Apparently, his esophogas is a weak spot also due to radiation treatment - it causes thinning of the tissue. I suspect his throat is weak as well as intubation caused him extreme irritation/pain. I wonder if the stomach acid problems he has is due to the radiation treatments.

He recently had surgery on his varicose veins - be sure to do this if you have leg swelling because it can progress to ulcers that are difficult to heal. He just completed this surgery and went to a wound care clinic to finally get the ulcers to heal (they were there for several months - again he was referred to a dermotologist when he should have been referred to wound care and cardiology for the vein surgery).

If you suffer from fatigue and bloating, be sure to have your heart checked out, insist, so you receive early treatment to minimize damage to your heart/lungs, and research the late effects of mantle field radiation and tell your doctor about it so that heart symptoms are not blown off by your doctor because you are "young."

Kathy S
Posts: 4
Joined: Sep 2011

My husband is in the ICU now, with hyperkalemia, low blood pressure, and severe anemia. Upper and lower GI showed only minor issues - not the cause of anemia. It seems mysterious, why he has been severely anemic twice in the past few months.

He is under evaluation for a possible heart transplant. There isn't much more they can do for him. He has restrictive cardiomyopathy due to radiation treatments. This means the heart is "stiff" and cannot fill well, causing heart failure and pulmonary hypertension.

Hodel13
Posts: 4
Joined: Dec 2010

Kathy,
I am sorry to hear that your husband is in the ICU. I wish him the very best and hope he has a full recovery.

Kathy S
Posts: 4
Joined: Sep 2011

Thank you.

He has been unable to exit the hospital. He is refractory to treatment for heart failure now. He goes into kidney failure when he is given diuretics. Diuretics are needed to remove the fluid that builds up in the body from the heart failure. He has a severe case of it - 30 to 40 pounds of fluid now.

In case this helps anyone someday, the only thing that is keeping him going now is Nesiritide. It has an FDA warning against home use so he is stuck in the hospital. It is controversial because it has not proven to help with shortness of breath in left heart failure; however, he has right heart failure and pulmonary hypertension. The drug works for these problems which has been noted in various written clinical observations; however, there are no studies to support its use. I presume this is because right heart failure is more rare. He also has restrictive cardiomyopathy (also caused by radiation), which the doctors have also noticed is helped by Nesiritide. Again, there are no studies. Restrictive cardiomyopathy is the rarest form of heart failure.

He may also have constrictive cardiomyopathy, which is the lining of the heart preventing the heart from filling. The areas where the surgeon cut through the pericardium to perform the valve replacement in 2002 could have adhered to the heart, causing the construction.

He may also be suffering from scar tissue from the 2002 surgery pressing on the right side of the heart (which faces the front of the body).

Surgery for the above-two options is very risky and may not work.

He was initially denied for heart transplant due to calcified aorta (scarring from radiation). I applied to other hospitals until one took him under consideration. I asked his surgeon from 2002 that replaced his valves to review his case, and his surgeon took his case to the heart transplant committee for reconsideration. They have reopened his case and are now allowing him to proceed with biopsies to rule out exclusion factors.

He has a tumor on his adrenal gland. If it turns out to be malignant, he would not be eligible. Next they need to do a liver biopsy to be certain his liver would withstand a heart transplant (he has liver cirrhosis, which is a result of heart failure).

The committee is also considering him for an artificial heart.

Kathy S
Posts: 4
Joined: Sep 2011

Thank you.

He has been unable to exit the hospital. He is refractory to treatment for heart failure now. He goes into kidney failure when he is given diuretics. Diuretics are needed to remove the fluid that builds up in the body from the heart failure. He has a severe case of it - 30 to 40 pounds of fluid now.

In case this helps anyone someday, the only thing that is keeping him going now is Nesiritide. It has an FDA warning against home use so he is stuck in the hospital. It is controversial because it has not proven to help with shortness of breath in left heart failure; however, he has right heart failure and pulmonary hypertension. The drug works for these problems which has been noted in various written clinical observations; however, there are no studies to support its use. I presume this is because right heart failure is more rare. He also has restrictive cardiomyopathy (also caused by radiation), which the doctors have also noticed is helped by Nesiritide. Again, there are no studies. Restrictive cardiomyopathy is the rarest form of heart failure.

He may also have constrictive cardiomyopathy, which is the lining of the heart preventing the heart from filling. The areas where the surgeon cut through the pericardium to perform the valve replacement in 2002 could have adhered to the heart, causing the construction.

He may also be suffering from scar tissue from the 2002 surgery pressing on the right side of the heart (which faces the front of the body).

Surgery for the above-two options is very risky and may not work.

He was initially denied for heart transplant due to calcified aorta (scarring from radiation). I applied to other hospitals until one took him under consideration. I asked his surgeon from 2002 that replaced his valves to review his case, and his surgeon took his case to the heart transplant committee for reconsideration. They have reopened his case and are now allowing him to proceed with biopsies to rule out exclusion factors.

He has a tumor on his adrenal gland. If it turns out to be malignant, he would not be eligible. Next they need to do a liver biopsy to be certain his liver would withstand a heart transplant (he has liver cirrhosis, which is a result of heart failure).

The committee is also considering him for an artificial heart.

Hodel13
Posts: 4
Joined: Dec 2010

Hi,
I was diagnosed with Hodgkins Stage IIB in 1984 when I was 28. I had a splenectomy and then radiation. My Dr. warned me that I would be at a higher risk for breast cancer so I started having mammograms at an earlier age than most. Years later I was still being seen by oncology (different Dr.) when he told me I had graduated and didn't need to be seen by his dept. anymore. I thought that the further away from the radiation I got, I would be less at risk but it seems it was the other way around. When I was in my late 40's, they discovered a benign nodule on my thyroid and put me on synthroid and did a biopsy it every few years. Then in 2006 I was diagnosed with Stage II breast cancer. Because I could not have regular radiation again I chose to do a lumpectomy and than mammosite radiation. They placed a balloon in the lumpectomy cavity attached to a thin tube. Then the radioactive seed is place inside and withdrawn after each treatment. I had 2 treatments per day for 5 days. I also had 2 positive lymph nodes so I had to have chemo as well. A second cancer diagnosis was difficult but I have a strong support system and got through it. In late 2010 we did another biopsy on the thyroid nodule and there were abnormal cells. They removed one lobe of my thyroid. The Dr. did find thyroid cancer in the nodule but it was microscopic and contained so there was no follow up treatment. I try to eat healthy and exercise and feel pretty good. Emotionally I have my ups and downs. I try to stay positive but worry about something else cropping up. I am grateful for the Hodgkins treatment I received as I am still alive and kicking. If I was diagnosed in 1960 it would have been a very different story. Still, there are those frustrating days when you wonder why we got to be part of this "club". I guess the best advice I can give is to listen to your body and if your Dr. won't listen, find another. I have a great oncologist who is very empathetic. I was tested for the BRCA gene (negative) and get breast MRI's as well as mammograms. It really helps to have a Dr. who listens and understands your concerns. I hope you are all well and healthy.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Glad to hear you have an empathetic oncologist, that certainly helps. Do you have a Long Term Effect specialist on your team? I go to a LT Effect clinic and have found this to be extremely comforting. Are you having regular echos and/or stress echos? Not to alarm you but it's important to stay on top of potential cardiac complications. As you may know, there are potentially numerous effects that occur 20+ years out from treatment. I'm with you on the emotional roller coaster of the ups and downs.
I was dx'd in 1989 (radiation) and 1994 (ABVD) w/Hodgkins Lymphoma, Invasive Ductual Carcinoma (double mastectomy) in 2007. Have a host of other "gifts" from the treatments, but as you stated we are "lucky" to have been dx'd and cured when we were.
Best wishes to you,
Cathy

Hodel13
Posts: 4
Joined: Dec 2010

Thanks Cathy. I have never heard of a Long Term Effects specialist but it is an interesting idea. I have mentioned to my Dr. that they really should do some type of follow-up on long term survivors. Just had a breast MRI and a bone density done. I believe I had an echo before my thyroid surgery last year and everything was good. I will definitely have them keep an eye on it.
All the best!

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Just want to Welcome you here to CSN, hope you plan to stay awhile with us and share your story.

Hondo

tvogel
Posts: 3
Joined: Apr 2011

Hi "Hodel13" -- I had never heard of such a thing either and only by chance ran into this doctor. We moved 18 months ago to Illinois and at the Northwestern Memorial Hospital, they have a STAR program http://www.childrensmemorial.org/depts/cancer/2003ar.aspx Check it out! I go through Dr. Suresh Didwania (the female Didwania... there are two), but it looks like there are other doctors in the program. It's designed for adult survivors of childhood cancers. Very thorough and I like that they know what to look for. Good luck--

Hodel13
Posts: 4
Joined: Dec 2010

Thanks for the info. Best of luck to you too.

Hepfan
Posts: 2
Joined: Aug 2011

I am so glad to find this blog. Apparently I joined this last year but my memory is absolutely shot due to all the various medical issues since the Hodgkins. I was diagnosed at age 15 in 1982, went through the strange tests, biopsies, splenectomy and 6 weeks of radiation. Since then I have had a plethera of issues. The summer after I was diagnosed, I came down with the chicken pox which then lead into a staph infection requiring hospitalization. The next issue was the diagnosis of hypothyroidism which could explain why I required surgery for a fissure. I had always been very active but was starting to slow down. I hurried to get married and gave birth to 2 healthy children after one doctor made sure I was aware that I would go through menopause early. The day after I delivered my second child,at age 27, I experienced excrutiating abdominal pain (fortunately while still in the hospital). The scar tissue from my splenectomy had formed a kink around my intestines creating a blockage so I was rushed into emergency surgery. Not too long after that the bacteria from my intestines created an infection and my incision had to be lanced so I cared for my newborn with a gaping hole in my abdomen. I remained healthy for a while but shortness of breath increased. In 2006, I developed pericarditis along with sepsis and was in ICU for 2 weeks with multiple organ failure along with a leaky aortic valve. My next diagnosis in 2007 was, as well all know DCIS, which resulted in a double mastectomy. In 2011 I started off having a severe persistent cough and extreme shortness of breath. Finally my doctors determined I had pleural effusions and started draining a litre of liquid out of my plueral sac each week for a month. This turned out to be chylothorax. In the end after various treatments and 2 weeks in the hospital, I ended up with a talc pleuridisis (sp)where the end result is now my lung is adhered to my chest wall to keep any further fluid from accumulating. My lung capacity is now 65% which is difficult from being so active earlier in my life. In February I started getting seizures which are not sure why but now I get to take anti-seizure meds. I get checked every 3 months by my pulmonologist and primary care doctor who are amazing as my latest diagnosis is pulmonary hypertension (which apparently I've had for a while??). I don't know if any of you experience the anxiety or PTSD? After not worrying about health issues for a while, I now wonder what's next or if this is the one that 'gets me'.Has anyone had any of these other lung issues?

Hepfan
Posts: 2
Joined: Aug 2011

http://www.touchbriefings.com/pdf/3221/needham.pdf

breathless's picture
breathless
Posts: 1
Joined: Jul 2003

I read through some of the stories here many sound so familiar to my own. I am 56 years old I had Hodgkin when I was 16 way back in 1973. I must say I have had a lot of good fairly trouble free years. I had what they call total nodal radiation and they removed my spleen followed by years of chemo. My first indication of any problems were problems with my thyroid. This was easily handled with a daily dose of synthroid for the rest of my life. I had some other problems too down the including gallbladder disease which runs in my family.

My real issues started about 12 years ago when I contracted pericarditis. I had it so bad after a pericardium window I spent 3 days in a coma. I was in the hospital for 6 weeks during the time I also had a cardial mri. In the end it was determined that the pericardium needed to be removed so this was done and I got better for awhile. Doing ok until about 6 years ago I had trouble with my heart again in the form of valve leaking. They were leaking so bad that open heart was necessary and I had a quadruple bypass with a double (mitral & aorita) valve replacement. It was a long surgery with an even longer recovery and when I first started my recovery I needed physical therapy and occupational therapy. I could not string 2 words together.

In November of 2011 I was diagnosed with malignant carcinoma in my right breast. Fortunately for me the lump was caught early only 1.2 cm. I had a lumpectomy which took forever to heal followed by 6 weeks of radiation to my right breast. No nodes were involved because they could not find any nodes. All of this followed by a daily dose of tamoxifen. But wait there's more.

Finally I though 2013 would be my year to feel ok but sadly its not to be. Last week I went to the hospital with shortness of breath and they diagnosed me with CHF gave me a shot of lasex and sent me home. That was on Wednesday. On Sunday I was back into the hosp ER and I was having terrible problems with light headed vertigo. (I also had this in the middle of the course of radiation treatments for the breast cancer but it was positional so worked through it.) This time they did a ct on my head and found an "adnormality" my latest doctor in a long list of specialiasts (a neurologist) had an MRI done on my brain and it was determined to be an old stroke. It could have happened even during my open heart which I would not doubt. At least it wasn't brain cancer!

Finally after a few days in the hospital my cardiologist has determined that I may have myocardial fibrosis. I had never anticipated this but it seems I have had the whole spectrum of mantle radiation effects to my heart as he explained to me I already experienced 3 of the 4 and that the fibrosis is the last. I am taking one day at a time now but must say I am quite scared of where this will lead and I really don't have any answers or know much about this latest heart condition.

40yearsandcounting
Posts: 14
Joined: Dec 2012

I am very new to this so I apologize in advance if I'm not doing something right!!

I was so struck by your story as it so closely mimics my own. I was diagnosed with Hodgkins in 1972 at age 15. So we were going through all that at the same time!! I also had trouble with my thyroid and ended up with a thyroidectomy. I also had open heart surgery to replace my aortic valve. Pure hell that one. I had several complications and ended up in the hospital for the better part of 6 weeks. I had a lung biopsy a few years ago for "suspicious" nodules which ended up being scar tissue, thank goodness. I elected to have bilateral mastectomies about 10 years ago as a preventative measure. My most recent issue is with my voice. About a year ago my left vocal chord essentially stopped working. I'm left with rather raspy voice and occasionally difficulty swallowing. I'm not sure I would be a candidate for surgery to correct this as I'm sure there is ongoing concern about more scar tissue from all that radiation.

I'm so sorry that you are having to deal with yet another health issue. It does seem that the negative effects of radiation turns out to be the gift that keeps on giving!! You sound like an incredibly strong, determined person who has already weathered your share of obstacles. I wish I could help but I don't know much about myocardial fibrosis and Hodgkin's. I can only say that I will be thinking of you, a "kindred spirit," and praying that you get through these ordeals with flying colors. You deserve that, and more!! Take care- best of luck to you. Hang in there! You are not alone!!

40yearsandcounting
Posts: 14
Joined: Dec 2012

I am very new to this so I apologize in advance if I'm not doing something right!!

I was so struck by your story as it so closely mimics my own. I was diagnosed with Hodgkins in 1972 at age 15. So we were going through all that at the same time!! I also had trouble with my thyroid and ended up with a thyroidectomy. I also had open heart surgery to replace my aortic valve. Pure hell that one. I had several complications and ended up in the hospital for the better part of 6 weeks. I had a lung biopsy a few years ago for "suspicious" nodules which ended up being scar tissue, thank goodness. I elected to have bilateral mastectomies about 10 years ago as a preventative measure. My most recent issue is with my voice. About a year ago my left vocal chord essentially stopped working. I'm left with rather raspy voice and occasionally difficulty swallowing. I'm not sure I would be a candidate for surgery to correct this as I'm sure there is ongoing concern about more scar tissue from all that radiation.

I'm so sorry that you are having to deal with yet another health issue. It does seem that the negative effects of radiation turns out to be the gift that keeps on giving!! You sound like an incredibly strong, determined person who has already weathered your share of obstacles. I wish I could help but I don't know much about myocardial fibrosis and Hodgkin's. I can only say that I will be thinking of you, a "kindred spirit," and praying that you get through these ordeals with flying colors. You deserve that, and more!! Take care- best of luck to you. Hang in there! You are not alone!!

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