Radiation decisions

I am 62. An endometrial biopsy revealed a Grade II cancer. Received a robotically assisted laproscopic total hysterectomy 3 weeks ago. The pathology report came back Stage I, no obvious spread, Grade 2b tumor, somewhat aggressive, l/l0 uterine wall invasion, with clean lynph nodes. The surgeon handed me off to an oncological radiologist who said "you can do nothing or 6 sessions of brachytherapy (internally administered radiation, with"minimal" or so they say, side effects. The upside reasoning was this - "IF" the cancer returns (she said a 5 to 7% chance) then there's a 50% chance it will be on the vaginal cuff (radiation target) and "IF" we radiate that location, it will reduce the chances by 65%. There are a lot of "IFS" there. The radiologist also said that a lot of surgeons don't always agree with her viewpoints - I thought that interesting. When I asked the oncological surgeon that did my operation what she would personally do, she said well "I'm not sure - I have 2 small children, so I "might" opt for the radiation." A gynocologist friend of mine from the West Coast said radiation was overkill given the pathology report, he would not recommend radiation therapy for his own mother...I like a personal viewpoint.

so, do I risk bowel, bladder, vagina problems associated with radiation or should I take the advise and go on my merry way - way tempting. Anyone out there have a similar story? Thanks for listening, and good luck to all.

I was 62 when I had my TAH/BSO for Stage1A Grade1 endometrial cancer contained in a single polyp in the uterus. The hyst. was supposed to "cure" the cancer. However, 6 months later I had a 1 cm recurrence on the vaginal cuff. I then had 28 external radiation treatments and 6 internal brachytherapy treatments. Certainly a decision to have radiation treatments is a personal one made in consultation with your doc and dependent on your specific situation. However,pelvic radiation can be done only once. Brachytherapy, especially 6 sessions, will result in continuing bowel and possibly bladder problems. Brachytherapy exposes you to a lot of radiation, itself a risk factor for cancer. I'm not telling you this to discourage you. Other women on this board have been in similar situations and have had to make the selfsame difficult decision. I hope they weigh in. Good luck. anna

Hi, Katherine,
Is there a chance you have the grade and the stage reversed? Stages usually have a letter after them and the grades don't.

Grade refers to the aggressiveness of the cells and grade 1 is the best one to have. Grade 3 is aggressive.

Stage refers to the spread of the cancer.

Please double check because there is a difference between stage 1 and stage 2. Even within the stages, the treatment varies. 1a, 1b, 1c; stage 2a, 2b, and 2c are the ways I've seen things labeled.

Aside from the diagnosis of cancer being difficult, I think the next most challenging thing is trying to determine the best treatment for you. (I danced back and forth between should I have or should I not have chemo for Uterine 3c stage 3. Did a lot of research on line and bought the book, "America's Top Cancer Doctors" and then called a couple of them. One called me back in person.)

All that aside, below are some links that might help you make your decision.

One thing I'd like to caution you about when you research online is finding sites from places you feel are medically sound. There are some "rogue" sites out there touting "cancer cures" that in my opinion are questionable.

A second important thing is to look at the date on the research and try to find the most recent. Treatments for endo today appear to be different than that of the 80's and '90's. Obviously, advancements have been made.

Here are links that you may find informative. I haven't taken time to reread them but they were some I bookmarked when I was doing radiation - both full abdominal external and three HDR (internal).

http://www.mayoclinic.org/radiationo...radioendo.html

http://www.webmd.com/content/article/4/1680_50264

http://www.medpagetoday.com/Hematolo...ancers/tb/2541

(The next link deals more with external radiation but it might give you another perspective. I'm guessing that the side effect I mentioned in this thread was from external rads but it could have been either. Whichever, my side effects, so far anyway, appear to have been minimal. My cancer was more advanced than yours so I really didn't have a choice regarding radiation.)
http://www.hystersisters.com/vb2/sho...d.php?t=244074

http://www.cbsnews.com/stories/2004/...in639707.shtml

I'm not sure if this next one regarding hip fractures is internal or external rads but it is also something to be aware of, in my opinion:
http://www.docguide.com/news/content.nsf/news/
8525697700573E18852570C1005C5220

There is another link that I'm not finding regarding a new study recommending rads for 1C and above. I'll keep looking.

You also might go to nationally recognized medical facilities' websites and see what they say. For example: MD Anderson, Sloan Kettering,... etc.
Also the National Cancer and American Cancer sites. One of them has a spread sheet of treatment options for each stage, if I remember correctly.

Radiation damage is always a possibility. Vaginal seems like it would be the most likely with internal radiation.
Dosage and procedures may vary from facility to facility or patient to patient so that is something to take into consideration, too.

Another thing to consider is that side effects may not arise at first.

Bowel and bladder are risks with external but I don't know if they apply to just internal. It is possible that they could. This is something to ask doctors about.

Have you considered making appointments with at least one other GYN-ONC in your area and getting a third opinion?

There is a newer form of radiation that some facilities offer which is more of a targeted (guided beam of sorts) external radiation and that might be something to look into. One lady posted about having it a while back. It was also featured on the national news around the same time. Can't remember what it was called. Maybe someone else will post with its name.

I like the personal viewpoint from the GYN you know but would also suggest having a second exam and review of your records. I think an in-person exam and review might help you make your decision.

The above is my opinion and I don't have medical experience (except for being a one year cancer survivor) so whatever you decide please continue to confer with your medical team.

I'll keep looking for that other site and post if I find it.

Wishing you the best.
Kate

Here are two other links that might help:
http://www.cancer.org/docroot/CRI/co...d.asp?rnav=cri

You'll need to scroll down to find the endo section:
http://www.wcn.org/State_of_Gynecolo...ncers_2006.pdf

Still not the one I was looking for... Will look for it later.

Thank you Anna for the reply. Tomorrow is an appointment with a second opinion at Lehey Clinic...lovely FEMALE oncological surgeon periferally involved in my case...will move on from there. Beautiful fall day here in New England...planted bulbs for Spring.

Hi, Katherine:

I am glad to hear you're going for a second gyn-onc opinion. I would recommend that you rely on the opinion of an experienced gyn-onc as far as your need for radiation, not a generalist gynecologist across the country who does not treat cancer patients on a daily basis nor have specialized gynecologic oncology training.

While radiation, just as surgery and chemotherapy, can result in major side effects, even death, in a small number of cases, it is important to recognize that these treatments also save many lives. The key piece of information women need to know when diagnosed with a gynecologic cancer is that they need to be treated by an experienced gynecologic oncologist. I was, and my gyn-onc recommended both internal radiation (brachytherapy) and external beam radiation in my particular case. Of course, this does not mean that it would be appropriate or necessary in your case.

When I questioned my gyn-onc about the need for this treatment, he said that he had seen women with my tumor characteristics recur and die who had NOT had this treatment. You need to have a gyn-onc decide whether, given your particular tumor characteristics, the brachytherapy is in your best interests. Only he/she can advise whether there would be a survival advantage for you, given all the pathological findings of your case. Incidentally, as Kate said before me, your tumor cannot be a grade 2B, as there is no grade 2B endometrial cancer.

I was paying my gyn-onc for his clinical judgment and experience, and I must say, more than seven years after completing treatment I am enjoying excellent health. While I would have rather spent the two days of the internal radiation out rollerblading instead of being flat on my back in the hospital (I had low dose internal rather than the high dose treatments that have been discussed in your case), I definitely think it was two days well spent. I now exercise daily, work full time and am also taking health-related graduate courses.

I would recommend that you do your research and ask a lot of questions. A good gyn-onc can address any of your issues and concerns and help you make a well-informed decision.

Best of luck and health to you.

MoeKay

Katherine,

I had cervical cancer, 1b1 and had a radical hysterectomy. After the path came back after surgery, and even though my stage stayed the same, by gyn onc recommended that I do radiation (external & internal) with a chemo boost. This was meant to be a preventative measure, as my tumor was a bit more bulky than anticipated. All of my margins and lymph nodes came back clear and all was beleived to have been removed in surgery. However, my doc felt that in order to make the chances of a recurrence as small as possible that I should go ahead with the treatments. I was very unhappy about it, but after a lot of thought and questioning of doctors, I went ahead with it.

It doesn't sound as if your doc wants you to do anything other than the internal. The internal was what I dreaded the most, I had 3 sessions of brachytherapy. However, after voicing my concerns to this particular doctor and his nurse they did everything in their powers to make me more comfortable. I was also put into a twilight sleep during each procedure, so I remember nothing - for which I am grateful.

I beleive the only side effects I am still feeling (7 months later) is vaginal dryness (which isn't horrible - doesn't really bother me) and bowel urgency (which, remember, I also had 25 external beam radiation treatments). For about a month after the treatments I had some discomfort with urination (burning sensation), but it went away pretty quickly. With internal, they are better able to shield your other organs than with external, so while there are still chances of long term effects of the bladder and bowels, the chances are pretty slim if you go with a very experienced doctor.

I'd have to say that the worst effect is that you run the risk of adhesions of the vaginal walls and either have to have sex regularly or use a dilator (for most women, some don't need this) weekly. This is to keep everything open so that future exams can be done.

Good luck with your 2nd opinion appt, I hope that you can get all of the info you need so that you can make the right decision for you.

Jasmine

Kathryn,

Kate gave you some wonderful advice, as well as lots of great links. She and Diane (Baylee6) were of such help to me when I was trying to figure out what course of treatment, if any, to follow.

I sought the opinion of 4 different doctors - my GP, my gyn/onc, my rad/onc, and a second opinion gyn/onc from John's Hopkins - and they all agreed, which made my decision somewhat easier. My suggestion would be that you also get an opinion from a gyn/onc at one of the major cancer centers in the country and take all of their recommendations into consideration before making a decision.

Good luck - it's not easy.

Hey Katherine, I was wondering how your appt went today, what the new doc had to say.

I was told to go through treatments after surgery. Then I found a hundred reasons NOT to. Then I talked to my gyne/onco. I told her all of my concerns. She told me very flat-out that she didn't think 'saving' radiation would be a wise option for me. I trust her opinion. She was looking at my age, my lifestyle, my diagnosis. Nobody wants to go through treatments and deal with the side effects. But now that it's all over, I thank God I did.

Hi Katherine, Glad you went on for a second opinon and if you still have doubts you may want to consider getting a third one. You also may want further explanation re the "somewhat aggressive" nature of the tumor; with aggressive cells radiation usually is recommended.
Please let us know how you make out.
s,
peggiesue