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

cathyp said:

"Full Body Scan"
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

hi Cathy
so it may be worth
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

m-star said:

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.....

Well, this all sounds familiar
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...

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...

Radiation Caused my Cancers

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

2manyrads said:

Radiation Caused my Cancers

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

She held you on her lap?!
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 said:

mantle radiation side effects
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.

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?

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.

I too have bad swallowing
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)

STAR Program in Chicago...
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 said:

hi Tami and everyone else
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?

Late Effects of Radiation
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."

Hodel13 said:

1984 Hodgkins survivor
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.

Long Term Effects from Hodgkins Treatments
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 said:

Long Term Effects from Hodgkins Treatments
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!

Hi Hodel

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

Hondo