Radiation: An Open Discussion

[GeorgiaGirl]

The key is getting this information to women as soon as possible. I'm thrilled that I found this forum but in all my searches 7 years ago, I did not find a forum like this and who's to say that a person dx today would be assured to happen across this forum. I think it needs to be the responsibility of the doctors. I believe that it should be STANDARD OPERATING PROCEDURE for any female entering into a series of pelvic radiation therapy treatments (or any other type of medical treatments that could result in vaginal stenosis) to be given dilators with instructions on how and WHY to use them religiously. It needs to be a tangible, prominent topic of discussion that implores the patient to take an active, ongoing participation in maintaining so that they realize it is a serious event. Not just a suggestion in passing or a pamphlet or page of information attached to the plethora of information we are already overwhelmed with. The doctors know this information. There is no reason for anyone to have to suffer from this condition!

[janeandrea]

Agreed!

[Polarprincess]

georgia girl.. somewhere in other radiation post on here, one of our members found a physical therapist who specializes in women's health issues and she was able to break up the scar tissue for her by "kneading" and things are well for her now if i remember right.. so there is hope..

[tori]

I know exactly what is feels like to go in to radiation for rectal cancer and not getting all the info. Midway through my treatment I started my period and then I started to hemmorage . I felt like I was the first female the radiologist treated for rectal cancer.( I am sure I wasn't) It has been a little over a year since my radiation/chemo and I am now going to a wonderful GYN who has started me on estrace cream, and within the first week I can feel a difference. He said my vagina is that of a 90 year old and I am just 46, so the radiation took a toll on me. How do we get this information to the Doctors, just tell them at our appointment Hey the next rectal cancer patient you have needs to get all the facts, I wish I would have. I thank you for this forum, I just found it and it has helped me alot.

[Terry]

I think the biggest problem with radiation is the radiation oncologist do not inform their patients about what they need to do! My doctor told me nothing accept to do nothing! If it wasn't for weissoccermom I wouldn't have used the creams I did which gave me less burniing. When I asked the rad. doc about them he said sure use them just make sure you wash them off before your treatment. Samething with the dilator. If jaynee (weissoccermom) hadn't told me about the potential problem there I wouuldn't have known. I think some of the problems could be avoided if they would educate themselves better and then pass that info on to us. I don't believe any woman should be radiated and not be able to have sexual relations with her husband again. All the rad onc. has to do is tell them/us we need to keep it open. I'm sorry for any of you with that problem.

I thank you Jaynee for all the info you gave me before I started. Mine was right at the anal sphincter and with the radiation I was able to have a transanal excision and it took a while but I have pretty descent bowel control (most days anyway).

[michellem]

Hi, everyone. I am new here, but have already seen a lot of great insights in Jaynee’s posts. I like my rad onc a lot and we communicate fairly well. Still ...
1) Told that radiation causes your skin to thin and to dry out? No. Told not to apply moisturizers in the field within 4 hours of tx? Yes.
2) Told to keep the radiation area (and anus especially) moisturized & "supple" and suggestions re: products, peri bottle instead of toilet paper, etc.? No (I’m in week 4 of 6 weeks planned rad and this has just become a serious issue.)
3) Told to have treatments on a full bladder? No.
4) Told to avoid fresh veggies, fresh fruit, nuts, popcorn, whole grains, etc? Yes - advised by the rad onc nurse (at first rad tx) to immediately implement a low fiber diet, including (when I asked) stopping Benefiber fiber supplement, which has been my savior for years of IBS to avoid the diarrhea/constipation rollercoaster. Then when I complained to the rad onc a week later about having trouble with the low fiber diet (painful elimination, spasms, etc.), he suggested Metamucil, Citracel or one of the other “predigested” fiber supps. I told him what the nurse said, and he responded quite cheerfully, “Oh, the nurses only know about 90% of what they need to know.” So, you put a nurse in charge of educating me but you’re not concerned about first educating her???
5) Told to use vaginal dilators or premarin cream? No. In fact, when I raised the issue of being proactive about vaginal stenosis on my own (thanks to this board), the reaction was astonishment, as though I was raising the most obscure point possible. I was told it was really only an issue for gyne cancers with internal radiation at a much higher dose, vs. external beam for rectal cancer. There was very little interest in the idea that it is better to *prevent* stenosis than to try to stretch out tight fibrous tissue later. I was advised that the time to use dilators (if ever) was beginning 4 weeks post completion of radiation. “But’s that’s about when I would be scheduled for the resection, temp ileostomy, etc. Is that really a good time to begin using dilators?” Response: “Oh, you’ll be amazed how quickly you recover from the surgery.”

Other things I was not told:
>That the radiation field basically encompasses the entire pelvis (I’m assuming now this is to kill malignant cells in the mesorectum’s nodes and any malignant “floaters” out there?). I had the impression that focused “beams” are “aimed” at the tumor and thought any rad effects to anything else was just because the beams had to pass through other tissues to reach the tumor.
>That folates may make the chemo excessively toxic. (So we’re supposed to make our own pasta from non-enriched flour?)
>That it is far better to have interventional radiology place your port than a general surgeon. The placement of my first port was not “ideal” (catheter stopped short of where it should have been at superior vena cava). The surgeon dismissed my concerns about the bizarre discomfort in my throat when coughing, bending over, etc. and said we would reassess 4 weeks post-op. (“There are no pain receptors in the blood vessel.”) I suffered weeks of steadily increasing pain, which required a lot of opiates to even take the edge off, and development of a fibrin sheath (they could not get blood return through the port, so I lost one of the advantages of a port which is not having to just stuck peripherally for blood tests) before getting the port removed and replaced. I’m sure that the end of the catheter from the first port was jabbing into the side of the vessel and whatever nerve complex lay on the other side. I feel I was robbed of two weeks during the early part of the pre-op chemoradiation when I should have felt fairly well before the rad effects began to accumulate.

So, I agree, the level of patient education is woefully inadequate.

I'm not sure yet how to do the signature box. I am 5/2012, age 48, dx with Stage IIa T3N0M0 mid-rectum.