Long-Term and Late Effects of Radiation & Chemotherapy

Many GYN oncologists seem to be in denial about long-term and late effects of radiation and chemotherapy. I understand that physicians do not want to emphasize these possible life-altering effects when they feel they need to get a patient into therapy as soon as possible.

I know that survivor rates are going-up, that new statistics are only relatively recently available for following-up on such effects, especially in relation to GYN cancers. Today, many women still fear the stigma of admitting to having abnormal PAP smears, much less being diagnosed with GYN cancer.

Moreover, this seems to be an issue with which the medical and health care professions, in general, have difficulty admitting that there can be very real and very painful or uncomfortable long-term and late effects of treatment.

I sometimes wonder if this is a subtle form of sex discrimination in that all the patients are women, so these effects are seen as more emotional than physical (as are many women's health issues).

While depression is, understandably, an almost unavoidable concomitant of cancer diagnoses, it seems to me that I hear and read more complaints from women who survive reproductive cancers to the effect that they are loosing their mind, becoming hypochondriacs, or are in constant unexplained pain that is treated lightly by their physicians.

I am not a physician. I am a two-time survivor of GYN cancers. In 1986, at 32 years of age, I was diagnosed with cervical cancer. I underwent several months of daily external radiation and two treatments of internal radiation. I did not undergo a hysterectomy (radiation without surgery was recommended by most GYN oncologists at the time).

I was placed on long-term hormone replacement therapy and took both estrogen and progesterone for a number of years, although it took me a long time to convince doctors that "standard" dosage for post-menopausal women was not "standard" in terms of its effects on my body. I had monthly cramps (I seldom had cramps when I was menstruating). My breasts were exquisitely tender, more so than during my one pregnancy and breast-feeding. Finally, one female doctor listened and lessened my dosage. However, I still had mood swings I did not have before hormone replacement. Finally, in my mid-forties, I simply stopped taking the replacements, with the advise and consent of my physician.

In 2002, at age 48, I was diagnosed with vaginal, uretheral, and vulvar cancer. These cancers were aggressive, and had spread to inguinal lymph nodes on the right side. I had a "biopsy" of the lymph nodes, during which they were actually removed. I then had several months of external radiation and chemotherapy. I was told by one doctor that unless I underwent pelvic exteneration (a radical surgical treatment that removes all organs from the pelvic cavity), I would die within two years. I had no intention of undergoing such radical surgery. I consulted other doctors. What they all agreed upon was the fact that, statistically, given my previous levels of radiation, I could not be given what is typically a "curative" dose of radiation for the current cancer. One doctor, the one who ultimately became my GYN oncologist, did recommend chemotherapy with cisplatin along with my radiation.

Since it is now 2010, I obviously outlived the prognosis. However, I do have vulvar ulceration accompanying radiation necrosis and more recent problems with neuropathy in my lower spine and right leg.

This past summer, I underwent 55 hyperbaric oxygen chamber treatments. This has reduced my vulvar ulceration and, with my determined wound care, the ulceration almost begins to heal. However, one recent consultation revealed that I may have the beginning of a vaginal fistula (communicating cavity unknown).

It is very difficult to locate physicians who understand long-term and late effects of radiation and chemotherapy, especially as related to treatments for GYN cancers. If you are like many cancer patients and have exhausted your fiscal and emotional resources, it is a most daunting task, verging on the impossible.

Aside from my cancers, most people would agree I've had a difficult life. I understand when doctors, and even friends and family members, wish to attribute my ongoing health problems to post-traumatic stress disorder from "everything you've been through." I understand, but lately I've come to realize that I do not have to like or accept those conclusions.

To all women everywhere who have had their health problems attributed to their "weaker sex", who feel crazy, marginalized, and dismissed--but especially to those who have undergone treatments for GYN cancers--I tell you that you are as sane as the next person (which may not be saying much). Take heart, other women know what you have been through and are going through. We know you are uncomfortable and in pain, just as we are.

Do not accept the first dismissal of your pain or suffering as the emotional side of the "weaker sex". It is difficult, but persevere and try to locate that doctor who understands the long-term and late effects of radiation, chemotherapy, and other invasive cancer treatments and diagnostic procedures.

I am still trying to locate such a physician. I may never find that doctor, but I continue to try.

May you all be well, regardless of your health problems.

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51 replies. Join the discussion

I'm sorry you had /have to go through so much suffering, it's just not right at all! I want to thank you for such a candid posting that will be of extreme value to other women and myself:)

Perhaps other women here can be of help to you, with finding a gyno/onco that get's what your going through, and provides you with what you need.

Your a true inspiration:)

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Thank you, rkh, for your empathy. I agree, it is not "right" at all that many people go through much more pain and suffering than have I.

If we watch any film or read any book about the plight of women and children the world over, we realize how fortune we are to have these few problems about which to complain. I have a roof over my head, food in my cupboard, and a doctor who will at least keep appointments with me. I do not live in an area torn by drug wars or political, racial, or ideological wars. I sleep at night without fear for my safety or those who are in my safekeeping.

I am one of the most fortunate of women on this planet.

That does not mean I, or you, or any other woman does not deserve to be taken seriously about their medical problems. Just to opposite. It will likely never happen, but every woman in the world deserves the best possible health care.

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Bless your heart, you have been and still going thru a lot. I have found that the Doctors do not talk or elaborate on the side effects of these horrible radiation and chemo treatments. I just wish they would be honest with us up front so we know what to expect in the worst case scenario so we could "prepare" and research ahaead of time so if the unexpected happens. From what I have read it seems like you are getting the best available treament known from this type of cancer. I too have cervical cancer with 2 positive nodes. Had a hysterectomy in april 2009 with 27 external radiations and six weeks cisplatin. I had hip pain after radiation but that has gone but I have neuropathy in my hands and feet but my doctor says that I should have had it earlier and it should be gone. Does it ever go away? Is there anything else to expect? I just had a negative pap and I will have a pet scan in April that will hopefully be fine. I am 47 and I have a lot to live for. I pray daily for all us women that we can find comfort and a cure. I would appreciate any other information you can share about your unfortuanate experience, you have been thru a lot but you seem to have a good team helping you and positive outlook which truly helps us to fight to win.

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I am so glad that you woman are starting to talk about the effects of radiation and chemo. I have found that doctors are not listening to our cries after the radiation. We need to be informed before the treatments. Woman please keep voicing what the treatments have caused, this is the only way that we will ever get the doctors to understand. I have many side effets, just like all the other women. Hip pain, back pain, feet and hands that go numb all the time. My spine seems to always be in pain. I was a healthy, active 43 year old who was always on the go with no health issues, after the treatment I went from healthy to disabled. I know that it was all the radiation and chemo. Lets all be heard!

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I'm sorry skinsfan,

I pray that you will find peace from all of your sufferings.

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rkh

Thank you so much for caring about my feelings.

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"Lets all be heard!"

Skinsfan, yes, that is part of the idea. Let's be heard! But what can we do to ensure that the health care profession listens?

The only thing I know is to not let yourself be categorized by someone else, to not back down, to keep telling your doctors that this is real.

Other suggestions welcome.

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schnookums,

"Had a hysterectomy in april 2009 with 27 external radiations and six weeks cisplatin. I had hip pain after radiation but that has gone but I have neuropathy in my hands and feet but my doctor says that I should have had it earlier and it should be gone. Does it ever go away?"

All I can tell you is that mine has not. I have a lot of good days, when I can take a small dose of pain medication (in my case, acetaminophen with codine), in the morning then mostly ignore any pain or discomfort. I have other days when the neuropathy, which presents mostly now in my right knee, is like an exposed tooth root, every movement of my lower body causes more muscle spasms and cramping, until everything is tied in a knot. Those days, I mostly rest.

"Is there anything else to expect? I just had a negative pap and I will have a pet scan in April that will hopefully be fine."

I am happy to hear this good news on the negative pap. The PET scan should show if there is any metastasis, so look forward to hearing the results of that.

What else to expect?

My first cancer and radiation left me with chronic radiation cystitis. You might find that you are highly susceptible to yeast infections. Pay close attention to your body, it will tell you what's wrong. Use OTC yeast treatments as necessary, but always let your doctor know what is happening. There are prescription medications that can be of more help.

Ditto with general urinary tract infections. Again, let your doctor know. Ask for some urine sample cups to keep at home. If you have burning sensations before or after urination, or have trouble urinating or with leakage or incontinence, go ahead and collect a sample and drop it by your doctor's office or lab. Keep on top of it and don't let it go too far before you talk to your doctor.

IBS-type symptoms also seem not uncommon. Watch that your diet includes plenty of fiber and water. Cut back on sugar.

I started a modified Atkins diet during my chemo (which lasted about 45 days longer than my radiation treatments). I've read lots of research indicating that readily available carbohydrates (like processed sugar, which are broken down rapidly in the body and converted to energy within cells) enable cancerous cells to multiply more rapidly by providing them with the necessary energy to do so.

"I am 47 and I have a lot to live for. I pray daily for all us women that we can find comfort and a cure. I would appreciate any other information you can share about your unfortuanate experience..."

I have lots I can say about my experience, but can and will respond better to specific questions.

It is good that you have lots to live for, so I, too, pray you and all women will be well. At the time of my last cancer, my elderly mother lived with me and I worked and took care of her. I only asked for a little more time to be able to see that she could still be taken care of. Unfortunately, she died within days of me finishing my final treatments, while I have lived far beyond the days I expected to be allowed.

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P.S.

I also have problems with neuropathy in my hands, which started within a year of my first cancer and radiation. At the time, I was diagonsed with carpal tunnel syndrome and told that if I did not have surgery, I would loose all feeling in my hands within five years. That was 1987.

However, I listened to my body and knew this was coming from my spine, not carpal tunnel. I refused the surgery.

Now, some 22 years later, I have lost most feeling in my fingertips and am now loosing some motor control. I drop things constantly. If I feel like it, I pick it up. If I don't I leave it until I do feel like it.

I used to be a neat freak. I have now learned to live with a little mess. :)

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thank you so much for sharing that info with me. I have been lucky so far that I have not had any yeast infections or urinary. When my bladder feels full I have to go right then, I am not able to put it off or I will have some leakage and if I sneeze, well, we know what happens then. LOL. Is this from the bladder being weakened from the radiation? I will stay in touch.

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schnookums,

"When my bladder feels full I have to go right then, I am not able to put it off or I will have some leakage and if I sneeze, well, we know what happens then. LOL. Is this from the bladder being weakened from the radiation?"

It could very well be presenting symptoms of chronic radiation cystitis. I had the same symptoms after my 1986 treatment, let it go, ignored it. Then, about 3 years after I had my last menstrual cycle, went to the restroom at work one day only to find panties and t. tissue soaked in blood. Why did I wait until then to see a doctor?

I was referred by my GP to a urologist, who diagnosed the CRC. He started me on a medication to help me control the "urge". I asked how long I would have to take it. He said, "As long as you live."

So, some 20 years later, I am still on the medication, now generic called "oxybutinin HCl" (there is a brand name but I've forgotten it.}

Recently, the Extended Release version of this drug came off IPP, and a generic became available. I was tickled to be able try it, but found myself too sensitive to it (could not urinate at all). So, I've gone back to my original.

There are other, newer, more expensive drugs, too. Also, "kegle" exercises (http://www.mayoclinic.com/health/Kegel-exercises/WO00119_ ) are supposed to help, but I found little relief from those.

Talk to your doctor, see a urologist if needed, and get it under control early, would be my advise.

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thank you for that information. I see the nurse practicioner from the radiolagy department Feb 11th and I will tell her about it. Do you take other medications for other symptons caused by cancer and treatments?
Have a nice weekend!!!

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"Do you take other medications for other symptons caused by cancer and treatments?"

Most of my problems are genito-urinary. I have several PRN medications I take as needed. I "compound" my own mixture of prescription/OTC topical meds to use on vuvla and labia that sometimes changes according to what my symptoms are.

Because of the neuro symptoms in right leg, at the moment, I'm taking a bit more meds than I'd like, especially the daily small dose of acetaminophen with codine.

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Apparently, long-term and late effects are now coming into the foreground in the UK:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publications PolicyAndGuidance/DH_111230

http://www.late-effects.group.shef.ac.uk/

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schnookums,

"I have found that the Doctors do not talk or elaborate on the side effects of these horrible radiation and chemo treatments. I just wish they would be honest with us up front so we know what to expect in the worst case scenario so we could "prepare" and research ahaead of time so if the unexpected happens."

I've been thinking about this. I think doctors do talk about some of the side effects before treatment, but seldom address the long-term and late effects possibilities.

I can understand that. What I cannot understand is that doctors do not discuss this POST-TREATMENT. More and more recommendations are coming forward for post-treatment care planning (though GYN cancers will likely be last to be recognized as needing this). For example, see: http://www.canceradvocacy.org/resources/journey-forward.html

In this scenario, doctors DO discuss possible long-term and late effects and actually inform the patient about symptoms to look for, and schedule appointments at specific times to look for specific long-term and late effects.

I would like to know: When can we expect GYN oncologists and specialists to recognize the importance of this practice?

BTW, I talk about long-term vs. late effects. FYI, my understanding is that "long-term" refers to effect that begin during or just after treatment and do not cease, but continue to manifest, often in differing ways over time.

"Late effects', however, do not manifest until many years post-treatment.

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Vineketa,
Thank you sooooooooooooooo very much for all of the information that you have provided for us. I didn't have any problems whatsoever and started right after my treatments to put cancer behind me and the BAMMMMMM!!!!!!!! I started having pain in my leg, left groin and hip. It started one night with a sudden onset of hip pain that woke me up. I would walk it off and go back to sleep. I worked 10+ hours a day during this time and was always on my feet. I then started to notice some mild swelling in my left ankle..once again I dismissed it and put it to me standing all day long at my job. THEN, gradually my whole leg started to swell and the muscles in my left leg started to feel very fatigued. They would cramp up and the only relief I had was raising my foot off of the floor and get the weight off of it. I brought it to my rad/onc's attention at my appointment and he said it was Lymphedema. He did not seem concerned at all that it could be a recurrance and believe me I ASKED!!! He referred me to a sports medicine rehab facilty where I have started therapy for LE. Before starting this LE therapy I called him and said the pain in my hip was becoming constant and he ordered an xray. It showed Osteo arthritis in my left hip. I then pestered him until he ordered further test and he ordered an MRI which once again only showed arthritis and rad damage. He wrote me a letter that said my MRI was abnormal but that there was "NO CANCER" (quote) and that "cervical cancer appears very well controlled on these images"....so~~~~ although I am still fretting that this could be a recurrance~~~ I find comfort in knowing my MRI was clear of cancer. His nurse told me thst an MRI is a very definative test and something more than likely would have shown up if it was there. Still...I am scared. I tell myself it could be micro but then again a very small cancer surely wouldn't cause me this much pain. My understanding is a larger cancer can compress nerves etc and cause alot of oain. Once again nothing was on my MRI.
I am feeling somewhat better after going to therapy. My leg is waaaaay down and I am nearing the point of ordering a garment, however I still feel pain....
I am getting my annual scans for the clinical trial team on Monday and I am scared beyond words.
What is your opinion of all of this?? You seem so very educated on CC and the late effects of the treatments.
I find comfort in your post when I read them.

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Beege,

"I didn't have any problems whatsoever and started right after my treatments to put cancer behind me and the BAMMMMMM!!!!!!!! I started having pain in my leg, left groin and hip..."

This is a common story. No problems, then... it starts, sometimes years later.

After my 2nd cancer, for awhile, in general I felt better than I had in years, with the exception of chronic fatigue.

Then I started to have any number of vaginal/urinary tract problems. Then chronic swelling and tenderness. Then chronic irritation and pain. Then problems in my right leg (right inguinal lymph nodes were removed).

I saw doctors, of every kind. Urologists, chiropractors, spine specialists (had spinal surgery in 2005), GYN-onco, primary care, etc. No one ever suggested any of this was due to cancer treatment until I developed the outright ulcer on my vulva/labia. Then, my GYN-onco used the words "radiation necrosis". I began research on after-effects of cancer, finding much for childhood cancers, but little on adult-onset cancers, especially specific to cervical/vaginal/vulvar.

"My understanding is a larger cancer can compress nerves etc and cause alot of oain."

I've read this too.

"I am getting my annual scans for the clinical trial team on Monday and I am scared beyond words.
What is your opinion of all of this?? You seem so very educated on CC and the late effects of the treatments."

I am not formally educated and am not a doctor. I'm mostly "experienced", i.e., educated through "hard knocks'. I would guess the chances that you have a recurrence this soon, especially of the size and in the spot to cause the neuropathy you describe, to be pretty slim.

Best wishes for good results from your scans. Be strong and, mostly, be well.

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I finished my treatments Nov. 20th and started back to work full time in January. I have noticed that I seem to get "swollen" in my abdomen through the course of the day. At first I thought it was because I was eating more and gaining back the weight that I had lost during treatments. I have a sensation where my ovaries are and sometimes it is a small pain. But from what I have understood my ovaries are most likely destroyed from radiation and that I am in menapause.
I also feel like when I go to bed at night and stretch out that I am stretching out my insides...could this be scar tissue that is pulling when I stretch?
I go for my first PET scan on the 25th and of course I think all these things must be the cancer growing again...but hopefully these are normal things that are happening....
Also one more thing...let me just tell you all my troubles :).....when I sit for a long time and get up I am so incredibly stiff in my hips and lower back.
If anyone else has felt these things too it would make me feel better!!!!

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L473,

"I have a sensation where my ovaries are and sometimes it is a small pain. But from what I have understood my ovaries are most likely destroyed from radiation and that I am in menapause.
I also feel like when I go to bed at night and stretch out that I am stretching out my insides...could this be scar tissue that is pulling when I stretch?"

I had radiation without hysterectomy and, yes, radiation pretty much turns it all into "scar" tissue. And, yes, it can pull when you stretch, at least it does for me. Sometimes causes muscle spasms in my abdomen.

"I go for my first PET scan on the 25th and of course I think all these things must be the cancer growing again...but hopefully these are normal things that are happening..."

Well, perhaps not "normal", but not uncommon.

"when I sit for a long time and get up I am so incredibly stiff in my hips and lower back.
If anyone else has felt these things too it would make me feel better!!!!"

Well, prepare to feel better!!!! Yes, most of these things are not uncommon. As for this last one, it can be a sign your muscles are beginning to weaken, so try to keep those muscles strong!

Best wishes & be well.

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I have heard a lot of woman having hip pain after radiation. This is what side effects I was told by my doctor...bladder and bowels but will go away after treatment..

Here is my story....
I worked for the USPS and hurt my back, so I went to the Spine doctor to get an MRI. On the MRI they found a herniated disc with two cyst on the ovaries. My doctor never mentioned the cyst. Luckly I was in school at that time and I got a copy of the MRI and took it to school and ask my teacher was I reading this right. I then made an appointment with my GYN and they took it further and discovered that I had CC. I was then sent to a Cancer Center where they order the treatments. I had 29 external and 3 days internal with 4 chemo. After the internal treatment I had blisters that was as long as a rat tail file ziz-zag all over my butt. It was just burnt from the radiation. When I got out of the hospital and went to my oncologist he tried to tell me that it was damned shingles. Two months after all the treatments I found I could not even walk down stairs without my hips hurting me so bad. For two years everywhere I went I had to run to the bathroom to poop. I could not control it and everytime I peed it was like peeding razor blades. After an MRI of my hips they found out I have tears in both hips. I also have two buldging disc, with bone spurs and asymmetrical spine. Not to mention that all this radiation and damage to my body has called fibromyalga. I unlike many of you cannot work. I have bad days and worse days. I have been to all sorts of doctors with little help. I am telling my story because I want all women who go through this to be heard. If we are heard maybe they will be something done to help the body from being damaged so much. I have other issues from the radiation but I will spare some of you new ones.

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