Radiated heart patients and what experiences you had over the years

[MarkG]

This goes out to all members who have radiated heart syndrome as a result of cancer treatments. How many times you went to the Dr and he said, this is most likely a result of your radiation treatments. When I ask what else I can expect, I get a non committal answer that there are numerous aliments to expect. I want to ask all of you who have a radiated heart about what you had that your Dr said is most likely a result of your radiation. I believe this information will give us insight into what to look for in the future.

I had Hodgkin?s disease where I received 25 radiation treatments from my jaw down to about 3 to 4 inches below my sternum 33 years ago. Over the years I had several ailments. They are:
? indigestion almost immediately after the treatments where I now take priolesic daily.
? muscle scaring to my neck, shoulder and chest. I can not develop those muscles. This one is a drag sine I have to buy custom made shirts.
? CAD which was diagnosed 24 years later when the Cardiologist found an artery 95% closed. I have had a stint, 3x bypass and another stint over an 8 year period.
? thyroid nodules that have been diagnosed just last year that may or may not require the removal of my thyroid. I am in a holding pattern, taking a pass by the Dr?s office every 6 months.
? I have very recently been upgraded from mild AVS to moderate/severe AVS. I am currently waiting on direction from my Cardiologist. I do have an appointment in the next two weeks which I must thank you on this site for arming me with information to ask my Cardiologist.

I am wondering if any of you over the years experienced similar ailment or are there some others that I have not experienced yet. This is an information gathering quest so we can be informed about what to look for in our bodies to keep us healthy. I am sure I speak for most of you when I say, I am thankful for the treatments that saved my life, but I really don?t enjoy results.

 

[ALCapshaw2]

Whatever happened to the Medical Motto: "Do No Harm" ?

There are over 12 members of VR.com who have suffered Radiation Damage, mostly from treatments for Hodgkins Disease (including myself). Do a SEARCH for "Hodgkins" and "Radiation" to find most of the relevant posts.

It sounds like you hit all the 'Biggies'. I can still remember the words from one of the Radiation Physicians: "Just in case we missed something in the X-Rays, we are going to radiate your CHEST" If I had it to do over, I think I would DECLINE the "Just in Case" radiation!

Someone posted an article from "Pediatric Oncology" that listed the following 'late term effects' of Radiation to the Chest: Cardiomyopathy, diffused stenosis to the Coronary Arteries, Aortic Valve Stenosis, Mitral Valve Stenosis. I'm not sure if they mentioned the Esophagus but my GI Doc suspects that radiation can 'ruin' the Lower Esophageal Sphincter (LES), hence lifelong treatment with Prilosec or Nexium or surgery (called Fundoplycation - didn't sound like "FUN" to me!) where they wrap the upper part of your stomach around the LES.

You will also be interested in Johnny Stephens "story" which can be found by going to the VR.com Main Page (click on ValveReplacement.com at the top of the page, click on "Personal Stories", look for "Johnny Stephens" under "Two Valves" or some such title.

When it comes time to replace your valve(s) most surgeons knowledgable in Radiation Damage recommend Mechanical Valves because of the considerable scarring to the heart and arteries (including the aorta). You may want to discuss replacing BOTH the Aortic and Mitral Valve at the same time, even though they both may not meet 'normal' indicators. In time, it is likely the other valve will require replacement for yet another Open Heart Surgery which can become HIGH RISK for Radiation Survivors. Look into the third generation On-X valve with improved hemodynamics and lower propensity for clot formation. See the Valve Selection Forum.

If I can find the Pediatric Oncology Paper, I will post it separately.

'AL Capshaw'

 

[ALCapshaw2]

Radiation Effects on Heart

Radiation Effects on Heart

Radiation Effects on the Heart -
Article found on the Pediatric Oncology Resource Center website - 'AL Capshaw'


Late Effects to the Heart

By Nancy Keene and Dr. Kevin Oeffinger MD

Important: This article appears in the Winter 2000 Candlelighters Childhood Cancer Foundation Newsletter (downloadable as a pdf file on the Candlelighters web site). It is reproduced here with the permission of Ruth Hoffman, Executive Director and Newsletter Editor of CCCF.

Part II: Radiation and the Heart

In our last column, we discussed the long-term effect anthracyclines (adriamycin, daunorubicin, idarubicin) can have on the heart. Several readers called asking about the recommendation for life-long follow up for those who received 175 mg/m2 after the age of five. This dosage refers to the total dose a survivor received during treatment. The summary of treatment that you should get from the treating institution should include total (also called cumulative dose) of every medication you received. So, if you received 175 mg/m2 of any combination of anthracyclines over the course of your treatment after the age of five (or any dose prior to the age of five) you should get periodic testing of your heart for the rest of your life. Lower dosages generally do not cause a problem. Nevertheless, because some survivors will have heart problems even with lower dosages, it is important for them to continue regular medical follow-up with a physician or a long-term follow-up program and discuss screening tests on an individual basis.

Like anthracyclines, high-dose radiation can cause several late effects to the heart. Use of radiation has made a tremendous difference in treating cancer and leading to significantly higher survival rates, but can also lead to problems many years after treatment. Because some survivors are at higher risk for heart problems than others and because tests are available that can pick up problems at an early stage, it is important for each survivor to find out his/her individual risk.

The Heart

As we discussed in Part I, the heart is a large muscle that is divided into four chambers and is designed to pump the blood around the body. The upper chambers or rooms are called atria and the lower chambers are called ventricles. The blood returning from the body enters the right atrium, is squeezed into the right ventricle, and then is pumped into the blood vessels in the lungs. It is here that the oxygen we breathe is transferred into many small blood vessels in the lungs. The blood, now rich with oxygen, returns to the left atrium and then is squeezed into the left ventricle, the largest and most powerful of the chambers. The left ventricle contracts to circulate the blood to the entire body.

The doors between the heart chambers are called valves (aortic, mitral, pulmonary, and tricuspid). One valve will open as blood flows into a chamber and then close as the chamber contracts and squeezes the blood into the next chamber. On the outside of the heart is a network of blood vessels (coronary arteries) that take oxygen and nutrients to the hard working heart muscle. This network starts as two vessels that then divide into several branches.

The Problem with Radiation

Most survivors who received radiation will not have a problem with their heart. But in some, the radiation can damage the heart in one of several ways, including damaging the heart muscle, the valves, or the coronary arteries. Each of these three problems is quite different, so let's discuss them one at a time.

Damage to the heart muscle is called cardiomyopathy. Remember from our last column that this term is used when the muscle does not work as well as it should. It generally affects the left ventricle (chamber) more than other parts of the heart, causing it to be stiff and less responsive to changes. Usually when someone is at rest the heart does not have to work hard. But when the heart needs to work harder, such as during pregnancy or strenuous physical activity, the stiff left ventricle may not be capable of increased pumping action. If this happens, the blood that is being pumped through the left side of the heart (atrium and ventricle) does not get pumped out fast enough and some of it “backlogs” in the small blood vessels of the lungs. The oxygen in the lungs is transferred to these small blood vessels, and so when the vessels become engorged with the backlogged blood, the oxygen can not be transferred properly. Though this problem, called congestive heart failure, can be quite serious, there are medications that can help.

Radiation can also damage the valves in the heart, especially the two valves on the left side of the heart (mitral and aortic). If a valve is damaged, it can lead to either being "leaky" so that blood flows backwards into the chamber it came from or it can be stiff and not open very well, slowing the flow of blood. This can lead to congestive heart failure and other problems with the heart.

A third problem that radiation can cause is premature coronary artery disease. The network of small blood vessels on the outside of the heart feed the heart muscle with oxygen and nutrition. The interiors of healthy blood vessels are smooth. Radiation can roughen the inside of blood vessels. These rough spots provide a site for fatty deposits (plaques) to develop in coronary arteries and other arteries and veins. Calcium deposits can harden the plaques resulting in atherosclerosis (hardening of the arteries).

Coronary artery disease (coronary = heart, artery = blood vessel, disease = what we don't want) is when one or more of the blood vessels or branches gets clogged with plaque. It is similar to a clogged pipe that does not allow much to flow by it. If this happens, the heart muscle cannot get enough oxygen and nutrition for all of its work. So when the heart needs to work harder and it cannot get enough oxygen or nutrition, it generally causes some chest pain (angina) which will last a few minutes until the oxygen gets gets through the partially clogged artery. If the blood vessel is fully blocked, the part of the muscle that was depending upon the oxygen from that vessel dies (a heart attack). If it is a small branching blood vessel going to a small amount of heart muscle, then the person has a small or minor heart attack. But if it is a larger vessel feeding a larger amount of heart muscle, the heart attack is serious and can be life-threatening.

Who is at risk?

Children or teens who received spinal radiation, chest radiation (Hodgkin’s, non-Hodgkin’s lymphoma), left flank (Wilms), or radiation directly to the heart are possibly at risk. Modern radiation techniques using lower total doses, hyperfractionation (smaller doses more often), and cardiac shielding are less likely to cause damage.

Whether the heart sustains injury after radiation treatment depends on several factors including:

Total radiation dose
Dose of radiation fractions
Amount and areas of the heart treated
Presence of tumor in or next to the heart
Chemotherapy drugs used - the anthracyclines greatly increase the risk
Age, weight, blood pressure, and family history.
Smoking
Cholesterol level What are the symptoms of a heart problem from radiation?

The signs and symptoms for radiation-induced heart damage vary widely. Possible symptoms of congestive heart failure include:

increasing shortness of breath or difficulties in breathing with exercise
shortness of breath when lying flat, especially at night
chest pain (generally a smothering type sensation)
increasing fatigue
poor appetite
swelling of the ankles Possible symptoms of coronary artery disease are:

Uncomfortable pressure, fullness, squeezing or pain in the center of the chest that lasts a few minutes, or goes away and comes back
Pain that spreads to the shoulders, neck or arms
Chest discomfort with lightheadedness, fainting, sweating, nausea or shortness of breath By the time you notice symptoms, secondary problems may have developed. Thus, it is important if you are at risk to have regular check-ups of your heart function.

Is there anything that I can do to stay healthy?

Very much so! The risk for each one of these three heart problems is increased by lifestyle choices. Smoking, lack of exercise, a poor diet, and alcohol (more than an occasional beer or glass of wine) can significantly add to damage done by the radiation. Cocaine is particularly dangerous because it can cause direct damage to the muscle or to the electrical system of the heart. Finally, uncontrolled high blood pressure or diabetes can add to the damage. Bottom line – take care of yourself and continue to get regular preventive medical care.

So now that you have scared me with all this information, what should I do?

It is not our intent to scare survivors with these facts and figures, but rather to educate the reader about potential long-term risks related to previous treatment. Many survivors have no heart damage. Many of those who do show damage have no progressive weakening of the heart muscle. However, it is very important to find out about your individual risk. In a past column, we discussed the value of each survivor obtaining a summary of his/her previous cancer treatment, including a list of chemotherapy medications. If you have a list, see if you received any radiation to the chest or heart. If you didn’t, this is not a problem you need to worry about. If you did (or if you are not sure), see your doctor and discuss your risk and get any necessary testing.

Nancy Keene is the author of Childhood Leukemia, Childhood Cancer (with co-author Honna Janes-Hodder), Your Child in the Hospital, Working with Your Doctor and Childhood Cancer Surivors (co-authored with Wendy Hobbie RN and Kathy Ruccione). She is Chair of the Patient Advocacy Committee of COG (Children&Mac226;s Oncology Group) and mother of 12-year-old Kathyrn who is a survivor of high risk ALL and 10-year-old daughter Alison.

Dr. Kevin Oeffinger MD directs a multidisciplinary program for young adult survivors of childhood cancer at UT Southwestern at Dallas TX and is partially supported as a Robert Wood Johnson Foundation Generalist Physician Faculty Scholar. He enjoys backpacking, running and hiking with his wife Patty, 16 year old son Daniel and 13 year old daughter Ashley.

 

[ALCapshaw2]

Radiation Damaged Valve Replacement Survivors and Surgeons

Radiation Damaged Valve Replacement Survivors and Surgeons

The most prolific Radiation Damaged Valve Replacement Survivors on VR.com are AL Capshaw, BVDR, Johnny Stephens, and Perkicar.

You can locate all of their posts by going to the Members List and clicking on "Find Posts by (name)"

I strongly recommend that anyone who has suffered Radiation Damage to their Heart consult with a Surgeon who has EXPERIENCE dealing with Radiation Damaged Hearts. This will generally require going to a MAJOR Heart Surgery Hospital.

The following Surgeons have been used by VR.com members who suffered Radiation Damage to their Valves:

Dr. Lytle is the 'Radiation guru' at the Cleveland Clinic
(see posts from Perkicar)

Dr. Glover performed VR on BVDR at Duke University Hospital

Johnny Stephens had his AVR+MVR at the University of Washington Medical Center

Al Capshaw had his AVR at the University of Alabama in Birmingham. Dr. James Kirklin and Dr. McGiffin are the top two active heart surgeons at that facility.

 

[MarkG]

Thanks

Thanks

I was just going to ask you to post the article because I could not find it in a search.

As always great information. Thanks Al.

Mark

 

[bvdr]

Hi, I had radiation treatments to my chest when I was 14. At the time radiation damage was not as well understood as it is now and was incorportated into treatment programs that seem unreal by today's standards. I had them in the fall/winter 1962 for pertussis(whooping cough) that just refused to clear up. The whole year I had health problems and at one point leukemia was in question. My spleen was very enlarged and I believe it was during this period of time I actually had rheumatic fever but it was never diagnosed at that time. It was a strange year.

In the last few years various doctors have mentioned the radiation as a possible contributor to several things but the most likely direct result is CAD. My blockages are not (or at least they weren't 3 years ago) severe but it is the location of the blockages. Both areas are in arteries right before/at junctions. One is the RCA right where it connects to the heart and the other is at a less critical spot at the very beginning (ostium) of the first diagonal branch. These areas are not where stenting works but other different treatments are available such as cutting balloon angioplasty. Ostial lesions are often found in post-radiation people.

I too have a hiatal hernia and GI problems requiring Prevacid daily. I have orthopedic problems too but what if any of this is directly linked to radiation I don't know.

It is an interesting topic though. My GYN has told me I am at an increased risk for breast cancer and I do have changes on my mammograms but everything seems stable at present. I guess, for me, radiation is just one of those things that happened and can't be changed and time will only tell what real effects it has had.

 

[Anne-Marie]

Hi Mark,

I had radiation to my neck and chest for Hodgkin's when I was 11 years old. I was diagnosed with aortic stenosis in 2001 and CHF in 2002. I've had to have my aortic valve replaced (2003) and a PET scan showed a large scar on the front of my heart, which initially was believed to be the result of blocked arteries, however an angiogram showed my arteries to be normal. The current theory is that the scar may have been caused by the radiation.

I had two breast fibroadenomas removed several years ago. In '93 was diagnosed with thyroid cancer and had my thyroid removed. I also have ridiculously soft teeth, but that may have been caused by the chemo a few years later.

I recall reading and article a while back that stated that an estimated 25% of people that have had radiation treatments suffer from lifelong fatigue. I'm not sure If I can find the article again, but I'll have a look.

Anne-Marie

 

[ALCapshaw2]

Notify Your Radiation Treatment Center

Notify Your Radiation Treatment Center

I would like to urge everyone who has suffered Heart Damage due to Radiation Therapy to notify their treatment center of their Heart, GI, and any other problems that may be attributed to Radiation Damage.

My treatment center was not very interested in my history since I was over 21 at the time of my treatment, BUT the Oncologist I spoke with did tell me that they track the histories of all Pediatric Patients.

Based on this information, it would seem that one of the best things we Radiation and Valve Replacement Survivors can do to 'get the word out' to the public and Medical Community is report our history of Late Term Effects to our Treatment Centers, especially if your treatment occurred before you reached 21 years of age.

'AL Capshaw'

 

[Sheila2old]

Don't know how I missed this post but glad I found it tonight! Sometimes I feel too alone in this mess ya know?

I too had radiation therapy (30 treatments) to my chest for Hodgkin's Disease in 1981 at age 16 to "zap the tumors they couldn't remove". And I feel like I have been sick a lot since then! Or at least more than my share.

*Had to have all of my teeth removed at age 22 due to them being too soft and breaking (Dentists blamed radiation & pregnancy)
*Had to have uterus removed at age 27 due to scar tissue (Dr blamed radiation partly)
*Had to have ovaries removed as they were surrounded by a scar tissue mass at age 29 (Dr blamed radiation partly)
*Had Thyroid cancer at age 35 (Dr blamed radiation)
*Have had 2 lung surgeries for a biopsy and pleural effusions (fluid buildup) because the scar tissue is so thick on my right lung that it retains fluid if I have a small cold or allergy episode! (Dr blames radiation)
*Have had 2 breast biopsies in the past 4 years for masses
*I take Aciphex for my stomach acids that are always outta control & Hiatial hernia(still trying to find out why it's so bad sometimes)
*During last lung surgery (May '06) found out that my heart is a mess too. Trying to find a surgeon that will replace Aortic & Mitral valve and repair Tricuspid valve on a radiated heart. And of course the surgeon that has done my 2 lung surgeries says he "thinks I need to be in a larger facility with good Drs so that when I have trouble coming off the heart/lung machine, they can put me on a Transplant list if necessary!!!"

Uggh, at times like this tonight, I wonder why/what purpose was there in giving me radiation in the first place?!! But I am trying hard to keep my chin up, it just don't always work so good.

 

[CThrock]

Lets spend some time on this subject.. Who else in this forum has had radiation treatments and had other surgeries to boot along with heart surgery. I am one and just had another on my lungs and also on my vocal cord. All damage due to radiation treatments. I find this very interesting because not all the drs will acknowledge this problem with radiation.
I know alot of you have more information and can share..

 

[ALCapshaw2]

Here is a copy of a presentation by Dr. Lytle at the 86th Annual Meeting of Thoracic Surgeons taken from a post to the Valve Selection Forum on September 28, 2006 by member "Barbwil" entitled " H. valve surgery report from 86th annual meeting of Am. Ass. of Thoracic Surgery "


Radiation-Induced Heart Disease

In this excellent presentation, Bruce W. Lytle, MD (Cleveland Clinic, Cleveland, Ohio),[2] described a constellation of changes that occur in the heart many years (usually about 20 years) after exposure to radiation therapy. Not only is the heart affected, but other radiation-related noncardiac comorbidities also exist in these patients, such as sternal necrosis, recurrent pleural effusions (occluded lymphatics), radiation tracheo-bronchitis/pneumonitis, pulmonary entrapment, and gastroesophageal reflux disease.

Actual heart changes that can occur include valvular calcification causing aortic stenosis/incompetence, mitral incompetence, and tricuspid incompetence. Coronary artery disease is also an important manifestation that may be associated with restrictive cardiomyopathy (diastolic dysfunction), pericardial constriction, and aortic calcification.

In summary, previous radiation is an extremely difficult problem, and first-time operation should be carefully planned. A mechanical prosthesis should be strongly considered to avoid repeat surgery, because that could be an extremely difficult procedure in the presence of pericardial constriction along with challenging cardiac and noncardiac changes.

(Note: Dr. Lytle is considered by many to be the
Radiation Damage Guru at The Cleveland Clinic.
He is the Chief of Cardiothoracic Surgery at CC.)

 

[brd]

The gift that keeps on giving

The gift that keeps on giving

You've probably all heard this said about radiation. I guess for many of us it WAS a gift at the time. I had radiation over my thoracic duct which is part of the lymphatic system and located quite near the heart. This was part of a treatment plan for an ovarian tumor which it was thought at that time was spread by the lymph system. In any case I was 19 at the time.

I had a fibroadenoma of the oppositie breast when I was 22 and have had several lipomas (benign) removed Other than that, no problems until diagnosis with aortic stenosis at age 55. I had had a developing murmur for a few years that was never followed up. It finally was loud enough that a new PCP was alarmed. Thus began the last 8 years of being followed by a cardiologist with regular echos and stress tests.

I spent three decades engaged in fairly strenuous exercise activities (marathons, half triathalons, competitive tennis etc) so I was pretty shocked when the diagnosis was made. In fact I had run 10 miles the days before in 90 degree heat and high humidity. Once diagnosed I was advised to be more measured in my exercise which I have been for the past 8 years.

I have not had a cath yet so I don't know if I have CAD but know there is a high likelihoood that I do. My echo numbers are prettty severe and I am probably looking at surgery within the next couple of months. I see a new cardio on Tues - one who is at Ma Gen where my surgeon is. I had been seeing one at the Brigham.

It's a wonderful thing to be able to communicate with a group like this. Thanks for starting the thread Mark and all who have thus far contributed. Maybe we should check with Hank and Ross about starting a forum dedicated to post-radiation issues.
Thank you all. Barbara

 

[CThrock]

Thanks for posting Barbara. It means alot to me to hear other peoples stories it gives encouragment and comfort to know your not the only one out there.
How are you doing with waiting? I think that was the worst part of the whole thing. I waited for 5 months seem like forever.
I will keep you in my prayers. We were the same age when we had the lymphoma/ Hodgkins. Back then they tried everything new with me just to get me well. Most of those procedures our know rock ages. Well hopefully we will talk again..

 

[bbbdirector]

I received radiation and MOPP chemo for hodgkins in 1978. I round out that I have aortic stenosis a couple of years ago and was told by my doctor that surgery was too risky because of a calcified aorta in April 2008. Since then, I have been receiving medicine treatment to control the symptoms. I seem to do fine unless I get a cold. I don't seem to get over them without going to the doctors and receiving medicines, namely antiobiotics.

I live in Mississippi and I am currently visiting my family in the DC area. I went to the Emergency Room and was hospitalized at Johns Hopkins on Dec. 22 for chest pains and asthma and SOB. I thought I had pneumonia because I have been suffering with a cold and cough for the past 2 weeks. But the CAT scan results reported that it was scar tissue they saw in my lungs and not fluid. The cardiologist, Dr. Feldman told me that my heart valves were a mess and that if I did not get them taken care of - the aortic stenosis would kill me. He felt that Dr. Duke Cameron could do the valve replacement if anyone could. I was released on Dec. 24th. and Dr. Cameron's office is to call me soon to set up an appointment for surgery. Does anyone know or been treated by Dr. Cameron?

bbbdirector

[email protected] - email address

 

[ALCapshaw2]

Dr. Duke Cameron has been used by several of our members. To find their posts, just do a Search (see the Blue Line at the top of the page) for Keyword "Cameron". Be sure to scroll down and select "Any Date" in the lower left hand side box.

I know that Dr. Cameron is highly regarded but have no knowledge of his experience with Radiation Damage. Experience with Scar Tissue is the Main issue and anyone who does a lot of 'Re-Do's' should be well qualified in that area.

You may want to print out this thread and take it with you when you see him. Due to it's length, I'm debating with myself over whether it would be advisable to send it to him beforehand. Some doctors become skeptical about "internet based information".

'AL Capshaw'

 

[flowergal]

Misdiagnosed with Hodgkins at age 11 1971.Received severe radiation to neck and chest. Spleenectomy &appendectomy, abdominal exploratory. Here are my post radiation problems:

Neck & back discoloration
Teeth have soft enamel
Neck never grew after TX very small neck only 11.5 inches around
Poorly developed neck and upper back
thyroid cancer 1978 r lobe removed
Breast cancer 1991
Aortis Stenosis 1986
AVR 2000, during surgery even though my mitral valve was working well he picked off calcium and caused it to leak and also I went into complete heart block needing pacemaker, never had rhythm problems before surgery.
2005 Carotid stenosis 40% blockage
2008 Osteoposis of cervical neck

Radiation is really wicked, it haunts you later and later.
Its damage grows over time peaking at 30 to 40 years later. Flowergal

 

[LuckyGuy]

I was diagnosed with Hodgkin's Disease in 1980, as a junior in high school. I was treated with radiation therapy to the neck and chest. I had a recurrence in 1982 (freshman in college) and was treated with chemo (MOPP).

Like most of us, the radiation lead to damaged aortic and mitral valves, which became balky and lead to stenosis. I had them replaced (with mechanical values) 5 months ago. I also have damage to the heart walls, where they don't move as much as they should, which limits my exercise somewhat. I too have CAD, in the arteries that were in the radiation area. My surgeon elected not to do a bypass, saying that the artery was only 50% blocked and evidence doesn't show better outcomes in this case. I hope he's right, because I had suggested he do the bypass while he was in there.

As for non-heart related ailments, I had some issues with fertility and I have constant nagging stiffness and pain in my joints. I can't say, however, whether these were caused by the radiation or chemo or both.

I would second the recommendations others have given:

- Find a surgeon who has specific experience with radiated hearts. I went with Dr. Lytle at CC, the "guru," and have no regrets.

- Depending on age, strongly consider mechanical valves as you don't wan't to do a reoperation (its been said that the first operation on a radiated heart is comparable to a second operation on non-radiated hearts).

- Discuss having your mitral valve replaced at the same time, and coronary bypass if appropriate.

As you've seen in this thread, the list of other problems caused by chemo or radiation is long and varies quite a bit by patient. But of course none of us would be here had we not gotten proper treatment at the time. Sure, radiation is the "gift that keeps giving," but so is the gift of being free of cancer.

 

[MTBMike]

Well... I guess you can

Well... I guess you can

Add me to the list of individuals who received radiation therapy and have subsequent heart problems. I'm an active 42 year old male who was diagnosed with Hodgkins Disease in 1993 at stage IIIB. I had a mass in my neck the size of a walnut and another in my chest the size of a lemon so I received six months of MOPP/ABV followed by four weeks of radiation therapy as treatment. I never realized that heart issues could be a long term effect of radiation therapy but over the last year or so my wife, a nurse at a local hospital, has told me that I needed to get my significant heart murmur checked out. She even told me what the problem probably was but I wasn't ready to face it. Heck, when I was diagnosed with Hodgkins at age 26 I thought I was 10' tall and bulletproof. Last August/September I could crank out a 3 1/2 mountain bike ride with an average heart rate of 164 and felt good, no way there could be anything wrong. Early winter felt more fatigued, resting heart rate was mid 50's and I was experiencing severe orthostatic hypotension. End of November last year after a 3 hour bike ride I tried to stifle a cough and experienced a bilateral loss of vision on the right side for about 5 minutes (cough due to exertion in cold weather, always happens below 40 degrees, told is possible lung damage from chemo/radiation; anyone else here experience the same?). Went to the ER to be sure it was not a stroke, ER doc listened to my murmur said it was a "whopping grade V out of VI all over the chest:. She diagnosed probably aoritc stenosis and ordered and echo. Echo put my aortic valve area at 1.2cm2 which from what I've read puts it on the high side of moderate; additioinally a bicuspid valve cannot be excluded. The echo report also indicates mild mitral valve stenosis. Looking back I've noticed changes in the last six months, more easily fatigued, extremities don't seem to be as warm as last winter, one episode of syncope last weekend.

I've got an appointment to see a cardiologist in a few weeks, got to face this beast. I've been doing a bit of reading, lurking in these forums and finally decided to register and post. I don't mean to hijack this thread but a few immediate questions come to mind.

1. Should valve replacement be treated differently in an irradiated heart? If so will most cardiologist recognize that and refer to the appropriate party?
2. What was the aortic valve area of users here when the valve was replaced and did being symptomatic or asympotmatic have any bearing?
3. In users experience with mitral valve showing mild stenosis, since they've got you under the knife, does it get replaced as well? (I realize most of you are not cardiologist with access to my records, just looking for users experiences).

I'd like to thank in advance the individuals who've put this resource together. I'm sure it will give me immeasurable enlightenment and comfort in the years to come.

 

[ALCapshaw2]

Welcome to our World Mike !

We have over 20 members of the Radiation Survivors Valve Replacement Club. All but one have Mechanical Valves. The (Tissue Valve) exception is a 70+ y.o. lady with other co-morbidities. I recall at least two dual-valve recipients, including the aforementioned lady.

You raise some good questions.

1 - Scar Tissue is one of the Main Characteristics of Radiation Damage so you will want a Surgeon who has Lots of Experience dealing with Scar Tissue (mostly seen doing re-do's). Finding a Surgeon who has operated on Radiation Damaged Hearts before would be a real plus. Don't expect their numbers to be very high. A Surgical Nurse at a Major Heart Hospital told me they used to see a couple per year (this was several years ago). FYI, Valve Replacement Surgery represents about 10% of all Heart Surgeries so you can see that Radiation Survivors would likely be a very small percentage.

2 - A common 'trigger point' for recommending Aortic Valve Replacement is when the Effective Valve Area is 0.8 sq cm or less. One of our sayings goes "The Worse it Gets, the Faster it gets Worse". I'm a believer in that saying when it comes to the Aortic Valve !

3 - You raise an EXCELLENT Question about how to treat a diseased Mitral Valve that does not meet the usual criteria for replacement. SOME Surgeons are beginning to offer patients the option of Replacing the MV at the same time as the AV IF there are early signs of MV Stenosis. I've been told that MV Stenosis tends not to progress rapidly (unlike AV Stenosis) and can even 'stagnate' for some time.

YES, it raises the level of complexity and extends pump time to do both valves at once, BUT it avoids the possibility of yet another Open Heart Surgery. This would be a very good question to raise with surgeon(s) who have dealt with Radiation Damaged Hearts. I would recommend giving it serious consideration.

'AL C'

 

[New Guy]

Add me to the AVR due to radiation club. I was 25 in 1986 when I was treated for stage II Hodgkins lymphoma. I was fortunate to be treated at Stanford University where they specialized in using the minimum amount of radiation possible at the time, and they also shielded the lungs, joints and heart from exposure with lead blocks placed in the radiation beam field.

I too suffer from indigestion as well as a failed aortic valve. My surgeon could not tell if I was bicuspid or not, he did say he had never seen such a calcified valve in his many years of doing valve replacements. My aorta is slightly enlarged at 38cm. I am hoping it's due to the years of blood flow through my stenotic valve and not due to BAV which has a higher frequency of enlarged aorta including anurism.

My Mayo surgeon post op said he saw no sign of radiation damage to my heart or pericardium. Thank you mom for sending me to Stanford.

My recovery 10 months post op continues well. I'm feeling great and feel almost fully recovered. I can do everything I did pre surgery now, I'd just like to spend a whole day not thinking about the past years experience. I can manage a few hours now though, especially when I'm golfing.