pelvic radiation, after effects

sandyjdub said:

Very long-term survivor of cervical cancer

In 1982 at age 38 I was treated for advanced cervical cancer (stage 4) with a radical hysterectomy. Because the pathology report showed 7 abdominal lymph nodes positive for adeno-squamous cancer, one month after surgery I underwent both external and internal radiation treatment to my abdomen. I'm writing the story of my treatment in hopes of encouraging everyone who is dealing with this kind of cancer and its consequences. Even though today you may feel awful, wondering if you will ever heal, wondering if that new symptom is cancer again, it is possible to get better and to live with and even overcome the iatrogenic symptoms (caused by the treatment). 

These treatments were successful in eradicating my cancer. For a year following treatment, my body slowly healed and I began feeling better. However, I then began having symptoms in my legs like lymphedema, lymphangitis (like cellulitis) infections, and peripheral neuropathy, as well as extremely painful small bowel blockages. Over the years I learned to control the swelling in my legs with heavy-duty compression stockings. I learned the hard way that taking a daily prophylactic antibiotic will prevent bouts of lymphangitis (yes, I've been on lower dose antibiotics since about 1983!). The worst symptom, though, was the small bowel blockages which were extremely painful, often causing me to present at the hospital ER for treatment. Apparently both the surgery and radiation contributed to adhesions which restricted the activity and diameter of my small intestines. I dealt with these attacks happening 3-4 times a month for 14 years. How did I do that? One day at a time, trying not to think too far ahead and being grateful I didn't have cancer. Finally, when I could no longer eat any solid food, my doctor referred me to a surgeon who believed he could remove the scarred section and give me some relief. So I underwent a small-bowel resection in 1996. After that, my quality of life improved tremendously as I was then able to eat a normal diet without fear of blockage or pain. As for the peripheral neuropathy, it came on gradually so that nowadays my feet are mostly numb yet strangely hyper-sensitive. My doctor tells me that radiation to the abdomen can damage the nearby spinal nerves which then cause feeling in the feet to be impaired. Although it had been 32 years since I had my last radiation treatment, in 2014 I developed a blockage in one of my ureters (the tube connecting the kidney to the bladder) which was extremely painful, like a kidney stone. My doctor reported that the ureter had very slowly developed scarring from the radiation. Treatment involved dilating the ureter with a hollow flexible tube which stayed in place for several weeks and then was removed. That's one of the things about radiation - cells don't fully recover from it, so they can develop scarring many years later. I am very happy to say that I've had no further trouble with that particular problem.

Everyday I am thankful for my "good health" and thankful for things like compression hosiery, antibiotics, and comfortable shoes that have enabled me to live a full life, working till retirement at 70 to start a new phase. I can now spend more time with family, which includes great-grandkids, more time at the gym, and more time with friends. Life is good.

Thank you for your post.  My journey with cancer began in 1996.  In the last 2 years I have had multiple small bowel blockages, with resulting surgery.  As I read everyone's posts it helps me feel stronger and more able to advocate for myself.  I am going to try Hyperbaric Oxygen Therapy.  I am also thankful for my good health.  

Hi, new to this group, thank you for posting.  I hope that your symptoms have been relieved.

sandyjdub said:

Coping with digestive yuck

Although it's been over 2 years since you wrote, I'm inputting my two cents' worth in hopes it will help you or others like you. As a result of pelvic surgery and radiation treatment many years ago, I had frequent small bowel blockages that eventually led to surgery to remove the offending scarred intestine. I had been eating tiny servings of rice, fish, and diluted ensure until I lost so much weight my doctor said I was malnourished. Surgery to remove the distal end of my small intestine removed the adhesions, but also brought on some new problems.

Let me preface this by saying that I am not a nutritionist, dietition, or doctor. What follows comes from being educated by health profesionals with whom I've had contact, and from my own experience.

The distal portion of intestine (the part I had removed) has some specialized functions. It absorbs vitamin B12 and bile. The B12 is easy to fix - I take 1000 mcg daily to keep my level in the normal range; some folks get B12 shots. The bile issue is different. Your small intestine uses bile to digest fats and oils. At the distal end, just before it goes into the large intestine, a normal bowel reabsorbs most of the bile. It turns out that when bile isn't reabsorbed and goes into the large intestine, it is irritating and can cause diarrhea. On top of that, intestines that have been radiated can have damage to the little vilii (like microscopic fingers) that produce enzymes like lactase and glutenase. That means dairy products, most of which contain lactose (milk sugar), can be hard to digest, leading to gas, bloating, and diarrhea. What about the glutenase vilii? You guessed it - glutenase helps digest grains containing gluten: wheat, rye, barley, and a few others. The result is gluten intolerance, although not as extreme as celiac disease. Now we've got irritation to the large intestine from bile, lactose, and gluten. How to cope? Modify your diet to be low in fat, lactose, and gluten. Animal fats may be more troublesome than vegetable or nut oils. I go for low-fat foods to try to keep fat grams below 10 per meal. With lactase tablets and products readily available, one can eat most dairy products. One paradox is this: although aged cheeses, sour cream, and butter have little lactose, because they contain animal fats you'll want to minimize their intake. Now that gluten-free diets are all the rage, it is much easier to avoid gluten. My diet is varied, healthy, and enjoyable. Sometimes I cheat by eating a cookie (gluten and high fat) or some cheesecake (lactose and high fat), so I pay the price by taking lomotil and staying close to restrooms.

When I began taking medications to help with my neuropathy and restless legs syndrome, I found that my symptoms of diarrhea were helped. That's because the side effects for those meds include constipation which is a good thing for people like me. 

Hi Sandy,

Thanks for your great post.  I've been through IP chemo and pelvic radiation and surgery to the pelvic to treat ovarian cancer.  My weight loss has been extreme but I've managed to keep it somewhat stable.  I also get intermittent SIBO.  

Since treatment, I've had to stick to a very strict low fat, gluten and dairy free diet....basically eggs, avocado, gluten free bread, fish and white rice with a tiny amount of olive oil and coconut oil.  I tried to slow cook a chicken thigh and had the juice but I couldn't absorb the fat and I was in bed for 2 days.   Could you please share with us what you've been able to eat?  I would love to expand my diet in a positive way if possible.  Thanks

janieb53 said:

Lymhoedema

I also have this in both legs as a result from my radical hysterectomy and radiation. I am now seeing a therapist who is teaching me wraps and massage therapy that could help reduce edema and help with pain from neuropathy. 

I have damaged nerves & artries they did stents & bypass for artries but didn't help nerve pain 24/7 or loss of being able to walkso far have not found anything that helps

sandyjdub said:

Very long-term survivor of cervical cancer

In 1982 at age 38 I was treated for advanced cervical cancer (stage 4) with a radical hysterectomy. Because the pathology report showed 7 abdominal lymph nodes positive for adeno-squamous cancer, one month after surgery I underwent both external and internal radiation treatment to my abdomen. I'm writing the story of my treatment in hopes of encouraging everyone who is dealing with this kind of cancer and its consequences. Even though today you may feel awful, wondering if you will ever heal, wondering if that new symptom is cancer again, it is possible to get better and to live with and even overcome the iatrogenic symptoms (caused by the treatment). 

These treatments were successful in eradicating my cancer. For a year following treatment, my body slowly healed and I began feeling better. However, I then began having symptoms in my legs like lymphedema, lymphangitis (like cellulitis) infections, and peripheral neuropathy, as well as extremely painful small bowel blockages. Over the years I learned to control the swelling in my legs with heavy-duty compression stockings. I learned the hard way that taking a daily prophylactic antibiotic will prevent bouts of lymphangitis (yes, I've been on lower dose antibiotics since about 1983!). The worst symptom, though, was the small bowel blockages which were extremely painful, often causing me to present at the hospital ER for treatment. Apparently both the surgery and radiation contributed to adhesions which restricted the activity and diameter of my small intestines. I dealt with these attacks happening 3-4 times a month for 14 years. How did I do that? One day at a time, trying not to think too far ahead and being grateful I didn't have cancer. Finally, when I could no longer eat any solid food, my doctor referred me to a surgeon who believed he could remove the scarred section and give me some relief. So I underwent a small-bowel resection in 1996. After that, my quality of life improved tremendously as I was then able to eat a normal diet without fear of blockage or pain. As for the peripheral neuropathy, it came on gradually so that nowadays my feet are mostly numb yet strangely hyper-sensitive. My doctor tells me that radiation to the abdomen can damage the nearby spinal nerves which then cause feeling in the feet to be impaired. Although it had been 32 years since I had my last radiation treatment, in 2014 I developed a blockage in one of my ureters (the tube connecting the kidney to the bladder) which was extremely painful, like a kidney stone. My doctor reported that the ureter had very slowly developed scarring from the radiation. Treatment involved dilating the ureter with a hollow flexible tube which stayed in place for several weeks and then was removed. That's one of the things about radiation - cells don't fully recover from it, so they can develop scarring many years later. I am very happy to say that I've had no further trouble with that particular problem.

Everyday I am thankful for my "good health" and thankful for things like compression hosiery, antibiotics, and comfortable shoes that have enabled me to live a full life, working till retirement at 70 to start a new phase. I can now spend more time with family, which includes great-grandkids, more time at the gym, and more time with friends. Life is good.

Thank you, Sandy, for this informative story of your experiences. I am undergoing chemotherapy at the moment for a recurrence of uterine cancer (despite a radical hysterectomey 18 months ago) in what is left of my vaginal canal. After 3 roundss of chemo-Paclitaxol and Carboplatin-I will undergo 25 radiation treatments plus 3 inttensive internal radiation treatments and then another 3 chemo treatments. Im trying to understand  what to expect and whether I should go through with all that is planned. It is helpful to hear your story. I was hoping to find a more active forum community but I havent yet.

Thanks again.

I was in my 6th yr of remission, 9 yrs post stage 3C2 when I developed a tiny tumor on the vaginal edge. They did remove the bulk of the tumor but could not remove all of the margins also because of its proximity to the urethra.  My left common iliac lymph node also was enlarged and this was a lymph node that had been inoperable when I had my hysterectomy and was a yoyo for the first 3 years.  Megace had finally gotten it under control but I went off of that a year ago because of other issues.  Undergoing pelvic IMRT treatment now and seriously hope I didn't make a mistake.  I will not do chemo again because it was all pain, no gain, a lot of nerve damage that really affected my quality of life in a bad way.  24 more radiation sessions to go.  Hope you have had some success in tx options by now. I was diagnosed at end of July and this has been a long haul.