Post vaginal brachytherapy side effects - short and long term

UIL71UMICH74

Four weeks ago had a total hysterectomy via robot. The fast recovery was amazing compared to long recoveries from open hysterectomies. Now I need to decide on doing four radiation treatments to the vaginal cuff where they say cancer is most likely to return. I had 2.5 mm invasion into the myometrium, less than 50%. There was no spread to lymph nodes or other parts. The surgeon said she removed the uterus in tact so, theoretically, cancer cells did not spill out into the pelvic region during surgery. But the cells were designated “aggressive” so my diagnosis is Stage 1A Grade 3. The radiologist says my 5 year survival rate is 85% without radiation and 93% with radiation. A friend with Stage 2 cancer had five VBT treatments which left her with bowel and bladder problems. The surgeon and radiologist say I will have no symptoms other than vaginal scarring which needs a dilator. But that is not consistent with published articles, my friend’s experience, and the radiation nurse who warned about two days of diarrhea, burning urination, and fatigue after each of the four treatments. So - what to do? Live longer with potential long term side effects OR take my chances for 85% survival and no side effects. The radiologist warned that if I took my chances and it reappeared, the treatments would require 25 external pelvic radiation treatments with a survival rate of only 50-70%. Interested in other current patient’s experiences. Thank you very much.

cmb

Post surgery treatment decisions are always tough. I did not have VBT radiation after surgery and chemotherapy so I can’t comment on the side effects from that treatment. Hopefully other members who did will comment.

I did, however, have 25 external pelvic radiation treatments as there were a few cancer cells in my left parametrium initially identified. Although the CT-scan I had post-surgery and chemo did not show evidence of cancer, both my oncologist and gynecological oncologist encouraged me to have external radiation. While no guarantee, radiation would help to reduce the likelihood that cancer would return to that area in the future.

Since I had a very aggressive form of cancer, I decided to go ahead with radiation. I did develop bladder irritation (which felt like a UTI) during the fourth week of treatment. The radiation oncologist had warned me about this side effect before I began treatment. That side effect lasted for about 2 more weeks after the radiation treatment ended.

I was able to work during my radiation treatments and I never felt as fatigued as I had during chemo. I took Imodium to control diarrhea during this period (as I had during chemo too) and followed the recommended dietary recommendations to reduce the chance of triggering bowel problems.

I have not experienced any long-term side effects from radiation, although I did develop some neuropathy and lymphedema after chemo and surgery.

What I’ve learned from being on this board for several years is that each of us respond differently to the various treatments we have had, despite the statistics. I’m still cancer-free so far, despite being treated for an aggressive form of uterine cancer before the routine use of immunotherapy and other treatments that are now available.

I hope that you can make a decision about VBT that you are comfortable with, regardless of which way you elect to go.

One long-time member of the Board has commented about her experience with VBT in various posts over the years. You can search for her previous posts under her user name NoTimeForCancer although she checks in with this board regularly too.

NoTimeForCancer

UIL71MICH74, you have fantastic questions. I had a very similar diagnosis (dx), Stage 1A, Grade 3 (Uterine Papillary Serous Carcinoma - UPSC) all confined to the uterus.

I will share I had chemo (3), radiation (both 25 external and 3 brachy), chemo (3). I had the hardest time wrapping my mind around the radiation.

Regarding the radiation, I did not have any side effects other than the vaginal stenosis which is treated with the dilators, which if you go with the radiation I am happy to discuss more, but there are other women who have posted here who have had other side effects, some which lasted for varying times which include ongoing.

I am 13+ years out of treatment, and BECAUSE I was told of the risk of returning to the vaginal cuff area continue to have a PAP test. The past year the new doctor I found to continue to follow me, just because, told me they don't recommend the PAP for women over 60 or 65 - I can't remember which. I said to him, "but I was told that recurrence can happen at the vaginal cuff" and never really got an answer.

A couple things here:

1. I am fortunate to have good health insurance, and even if I didn't, would direct what I want, especially since I never got an answer from him. (Be your own advocate)
2. The vaginal tissue is very thin after the brachy radiation so I will notice pink on the dilator (yes, I still use but only once a week now) and it was way worse after the past year's PAP.

In the end, for treatment I had decided I wanted to do all I could to prevent it from recurring. Is it true that if I had said no to the radiation with initial treatment it would not been an option going forward? Meh - IMO there are plenty of radiologists who I could have found if I wanted that route later.

Please don't hesitate to reach out. As the radiologist I had told me, "it is your decision", but it doesn't mean it is easy.

UIL71UMICH74

https://csn.cancer.org/discussion/330051/post-vaginal-brachytherapy-side-effects-short-and-long-term

Hi, wow, both external and VBT - that's a lot more radiation than they plan for me (4 sessions x5.5 Gy each for a total of 22 Gys of radiation). I am happy to hear you did not have major side effects other than the vaginal stenosis. Did that affect your love life? I am 76 and might not have much of a love life to look forward to regardless of the radiation!

NoTimeForCancer

Well, I couldn't tell you how much radiation I had, but I do always consider myself lucky not to have been affected with side effects since I had NO KNOWLEDGE on what could happen. (I found this site, the only place I found for Uterine/Endometrial support AFTER I finished all my treatment). Having been here about 13 years now, I have heard quite a few women who have had horrible side effects from chemo or radiation.

I was 49 when diagnosed, and all my treatment was completed before I hit 50. I broke up with a guy after I had surgery and had a chemo or two under my belt - really, it's ok! I really have not had a guy in my life since -just not a lot of good guys around that aren't taken and I question if there is a guy who would be interested.

I have had pink on the dilators over the years which have bothered me enough that I have visited to dr to get checked out. It was my initial gyn onc's office, and they were wonderful. I am sure if I had not moved they would be happy to keep seeing me, but I moved far away and finding a new doc to just see to follow me has been a challenge. As some will attest, after 5 years they are ready to throw you to the curb even though your fear is always there, hiding under a rock.

UIL71UMICH74

https://csn.cancer.org/discussion/comment/1726567#Comment_1726567

Hi No Time,

Right, they don't do paps generally after age 65 which is why I had not been to a regular gynecologist for about three years (I turn 76 tomorrow). PAPs do not pick up endometrial cancer. My GYN/ONC wants to see me every three months for two years. Not sure how she will screen for recurrence other than visual exams? Not sure how often I will visit after two years either. One friend in FL who is two months ahead of me on this journey had 3 brachytherapies and her doc wants to see her only every 6 months...I am more comfortable with every three months. Still haven't decided, but the rad oncologist said if I skip this radiation and it recurs, I would have to do 25 external pelvic radiation visits with only a 50-70% success rate. I am SO tired thinking about this decision, I just want to go put my head in the sand! To find an excellent doctor wherever you are, go to www.castleconnolly.com - or maybe it's .org? Type your zip code, the specialty you need, and the max distance you want to travel. Up will come the names of the top 7% of docs, as recommended by other docs. My late hubby had numerous health problems and we found excellent care via the castle connelly website.

littlex

https://csn.cancer.org/discussion/330051/post-vaginal-brachytherapy-side-effects-short-and-long-term

I had endometrial cancer the garden variety type I was stage 1 grade 2. No spread to lymph nodes. I had radical robotic surgery in December 2020 My surgeon suggested that I get VBT.
After meeting with the radiologist he said I could get 3 treatments which had more radiation or we could do it over 5 treatments the same amount of radiation only spread out more I opted for 5. The radiologist said getting VBTwas a no brainer. It gave me a better chance of not having a reoccurrence. I had some radiation burn while I was getting treatments so he had me douche with peroxide mixed with water everyday for about 2 weeks. I didn’t have any other side effects. Sometimes I was tired after treatment but that was about it. I was very anxious about the treatment but honestly it really wasn’t bad. Last week was my last appointment with my oncologist It was 5 years since my last VBT session So my doctor released me. He told me I made him and his staff very happy because this was 5 years! Now I just see a gynecologist 1 a year I’m so grateful and I’m glad that I got VBT.I can’t tell you what to do, but I wanted to give myself the best chance possible to remain cancer free. Good luck whatever you decide I wish you the best.

UIL71UMICH74

https://csn.cancer.org/discussion/comment/1726511#Comment_1726511

Thank you for sharing. Were the dietary recommendations just during treatment or are they lifetime? Hopefully they weren't bland low fiber things like white rice etc. I try to eat high protein, high fiber, and low salt/sugar.…lots of veggies.

cmb

https://csn.cancer.org/discussion/comment/1726620#Comment_1726620

The dietary restrictions were for the time period I was receiving the radiation treatments. But I don't know if the same guidelines would apply to VBT. I had the external pelvic treatments for 5 weeks (25 sessions).

Knowing my tendency towards diarrhea since starting Metformin years earlier, I was worried when I was about to start radiation. But the nurse gave me a low fiber, bland diet plan to follow. The one time I deviated (fresh tomatoes from the farmer's market), I had immediate diarrhea. So I stuck with the diet after that. It was a boring 5 weeks, but it worked for me. I'm including the diet plan that was given to me below.

Radiation Treatment Low Fiber, Bland Diet

	Foods Allowed	Foods to Avoid
Milk/Milk Products	Skim or lowfat milk and milk and milk beverages, plain or flavored yogurt if permitted by your doctor	Yogurt containing fruits that are not allowed
Meat	Beef, lamb, veal, poultry, pork, canned ham, fish and liver. Meat should be baked, broiled, boiled or pan fried in a small amount of oil	Rare meat, sausages, hot dogs, cold cuts and any other spiced, cured or smoked meat or fish
Eggs	Eggs prepared any way
Cheese	Lowfat cottage cheese, lowfat cream cheese processed cheese and any mild flavored cheese (American, Swiss or Muenster)	Strong flavored cheese
Potato or Substitute	Boiled, broiled, creamed, mashed, scalloped, and baked white or sweet potatoes without skin, macaroni, noodles, spaghetti and white rice	Potato skins, and potato chips, French fries
Vegetables	Canned or cooked: asparagus, green and wax beans, beets, carrots, eggplant, mushrooms, pimiento, pumpkin, spinach, winter squash and tomato sauce	Raw vegetables or salads. Peas, com, cucumbers, all dried legumes and gas-producing vegetables like baked beans, broccoli, Brussels sprouts, cabbage, cauliflower, green pepper, and onions
Fruits	Applesauce, bananas, and cooked or canned fruit	All other fresh fruits, and dried fruits including raisins, berries, figs, coconut, and pomegranates
Juices	Apple juice, cranberry juice, apricot or peach nectar	All others including orange juice
Breads	Bread or toast: French, Vienna, refined whole wheat, light rye without seeds. Melba toast, rusk, zwieback, white or graham crackers, plain crackers without seasoning or seeds for hard rolls, plain sweet rolls, plain coffee cake, waffles, pancakes, cornbread, and French toast	Coarse whole wheat, whole grain, bran, rye breads and grains, dinner or sweet rolls with nuts, fruit or seeds
Cereals	Dry puffed wheat or rice cereals; cream of rice, cream of wheat, farina, hominy grits, Malt-0- Meal, and oatmeal	All dry bran, granola and wheat cereals or cereals made from prohibited flours and foods
Fats (use minimally)	Crisp bacon, butter, margarine, oils, cream dry cream substitutes mayonnaise, shortenings, smooth salad dressings, sour cream, smooth gravy, and white sauce	Salad dressings made with prohibited ingredients and tartar sauce
Soups	Cream and broth based soups made with allowed ingredients	All others
Desserts	Custard, gelatin, ice cream, sherbet, bread pudding, rice pudding, tapioca and other plain puddings, frosted or unfrosted cakes and cookies, and pie made with allowed foods	Any dessert containing nuts, seeds, raisins, coconut, or fruits not allowed
Seasonings	Salt, allspice, cinnamon, mace, monosodium glutamate, paprika, sage, and thyme, all flavoring extracts, and chocolate	Pepper, chili powder, cloves, dry mustard, horseradish, nutmeg, garlic and onion seasoning, and all other spices and herbs
Beverages	Fruit-flavored drinks, decaffeinated coffee, weak tea, coffee with milk or cream limited to one cup with meals as tolerated	All others including alcohol and carbonated beverages
Miscellaneous	Jams, jellies and preserves without seeds or skins, sugar, syrup, honey, hard candy, smooth cream candy, smooth peanut butter, and marshmallows	Nuts, popcorn, olives, pickles; chili sauce, soy sauce, Tabasco, Worcestershire and other meat sauces, and prepared mustard

UIL71UMICH74

Congratulations on reaching the five year milestone! Thank you for the diet. I am happy to hear that it is needed only during radiation treatments. Thank heavens chocolate is on the list, but I would miss my multigrain breads, fresh fruits, broccoli, nuts, garlic, onions etc.

Thank you, again and congratulations, again. May you have another cancer free five year period!!!

Lois

NoTimeForCancer

Great conversation that reminds me of so many things.

I met with a dietician before radiation, unbelievably it was not covered by insurance, but it was worth it. It probably would be helpful before ANY treatment, but what do I know?

That dietician showed me a study of cervical cancer patients who took probiotics and those who did NOT take probiotics during radiation. The dehydration, diarrhea, hospitalizations supported why those who did NOT take it means I am a life-long supporter of probiotics.

I was told by the gyn onc office to "push the protein" and when I asked the dietician about that she told me I should have 7-9 servings of protein a day. 1 egg = 1 serving, 1 chicken breast (typically large!) = 3 servings - so you could see where it sounds like a lot but it adds up when you look at it that way. Nuts, yogurt, ice cream, beef, chicken, eggs, all the things you think of.

UIL71UMICH74

So did the probiotics help with diarrhea?

Do you still take them?

There are so many brands out there with different types and numbers of "organisms", what brand/source was best?

Thx, Lois

NoTimeForCancer

I was taking them before all the treatment because I think gut health is very important (like your teeth need to be taken care of). I shared the study with a coworker and she told me how she saw a change, for the good, of her gut as well.

I do still take them (along with a D3). There are a lot out there and the one I took when I started I cannot find anymore so I now take Nature's Bounty Ultra Strength Probiotic 10, with 20 million live probiotics culture, but I have also take Nature Made Advanced Dual Action. I have also taken one that was a "Pearl" and it might have been the name of it, but I look for a high number of the little organisms. You'll have to find what you like, of course.

Again, I think everyone should find what they like the best. There are MANY different price points and does a $50 work better than a $25??? I don't know. I just want to do something to help myself.

MoeKay

Hi Lois,

I'm not sure if you've made up your mind about the vaginal brachytherapy yet. I had both internal and external radiation in 1999. Back then, brachytherapy was administered as an in-patient in the hospital, in isolation, flat on your back for two days. Things have sure come a long way in the last 27 years!

In any event, after my surgery, and before my pathology report was completed, my gynecologic oncologist explained that after surgery some women needed no radiation, some needed just internal radiation (brachytherapy), some women needed just external radiation, and some needed both. I won the lottery and required both types due to a number of factors that placed me at an elevated risk for recurrence. First, my tumor arose in the lower uterine segment; second, the tumor was fairly large (approximately 4 cm.); and third, I had extensive lymphovascular space invasion (LVSI). No cancer was found outside my uterus, either in any lymph nodes or anywhere else. I did, however, also have a deeply invasive stage 1, grade 2 tumor, which had invaded approximately 80% of the thickness of my myometrium. Not being a risk taker, I also asked my gyn-onc about chemo, but he said that chemo was not standard of care in my particular situation.

After treatment, I continued to see my gyn-onc for 15 years until his retirement. The first year it was every 3 months and then the intervals were increased over the years.

Wishing you all the best,

MoeKay

UIL71UMICH74

Thank you. You had a tough journey. Actually a hysterectomy was recommended to me 19 years ago, but I did not have faith in the doctor and I was a full time caregiver for my mom. It was before the days of robotic surgery and I could not afford to be disabled myself for two months of recovery from standard surgery.

Now, 19 years later, stage 1 grade 3 appeared in a very small area. Grade three is aggressive and puts me in an intermediate risk category for recurrence. If it recurs, the treatment is worse,: external radiation plus chemo. Both my gyn and rad oncologist said they would do VBT if they were in my shoes so I guess I will do it (4 sessions of 5.5 doses each). Not looking forward to it...

Thank you for sharing your journey. Up til now (age 76) my only medical history has been sports injuries and resultant joint arthritis. Cancer was a big shocker!

Mercorby

Hi,

I have had VBT after the hysterectomy in 2015 though EBRT was recommended. We were scheduled to see our new grandchild in China and I didn't want to do EBRT for the longer time and there was like a 3% difference between the two in terms of successfully preventing a recurrence. In 2016, 18 months later, I had a recurrence (now called minimal residual disease because they probably just couldn't see it before). Then I had the EBRT. The biggest side effects of VBT were vaginal dryness and fatique. The biggest side effects of EBRT were fatigue and not being balanced hanging upside down in the water (I'm a synchronized swimmer). The fatigue and balance worked themselves out.

In 2023, after many years on a cdk 4/6 inhibitor and anastrozole, I had a small recurrence in the vaginal cuff. That entailed interstistal vbt in the spots where the VBT didn't get to the first time around.

Hope this helps. In April, it will be 11 years on this journey. I swim 3 times a week, am about to start back at synchro one time a week, walking every day 2 - 6 miles, etc. - living my life enjoying my family and friends. My doctor calls it well managed cancer.

Best wishes to you.

Fridays Child

Hi, Lois,

I'm sorry to hear you have to deal with this. In my case, I was originally diagnosed in 2012 and had a robotic hysterectomy followed by five brachytherapy treatments. Side effects were minimal during treatment, some fatigue and one episode of diarrhea when there was a death in the family and I forgot my probiotics one day. It did not cause a problem with my love life. After five years I was discharged from the cancer center with a less than 5 % chance of recurrence.

A year after that, I was diagnosed with a recurrence in a pelvic lymph node that had invaded my hip joint. At this time I had chemo (carbo taxol) and external radiation. I had five weeks of daily radiation with concurrent low dose weekly chemo. Following that, I had six more full dose chemo treatments.

That was in 2018, so I'm almost eight years out from finishing that chemo. The oncologist says he will continue yearly CT scans until it's been ten years. The gyn oncologist has me on Megace, which he says I will take "until it stops working," so I'll be seeing somebody as long as I'm taking that. And if it does stop working, I guess it'll be back to more frequent oncology visits!

Best of luck to you with your decision!