Vaginal stenosis - an issue for women with rectal cancer

[Jolene]

Hi all - thanks to all the wonderful contributions of the posters out there which made me come across the term vaginal stenosis from radiation !

I have since been googling and reading up all the past posts on this issue and I am livid that my non of my doctors have mentioned a single word on this throughout my recent 6 weeks radiation.

The rad oncologist merely mentioned the early onset of menopausal. Before the realization of vaginal stenosis, I even asked him if I need to check in with a gynae to start managing any radiation indued menopausal issue and he responded with "what do you wanna manage?". I took his word, trusted him and left it at that.

Had it not been for this board, I wouldn't even realised vaginal stenosis is a thing !!!!

We have not had any intercourse since the cancer diagnosis hence I haven't felt any pain as mentioned by some other female patients on the board. Furthermore, the docs kept telling us "not to get pregnant" and "you can still get pregnant after radiation" kinda put us off any thoughts of sex at the moment, not to mention how tensed we both are awaiting for the subsiding of the tumour at the moment.

I spoke about this briefly to a female breast doctor on a separate matter and she seemed clueless about vaginal stenosis too. All she knew was the effects of menopause which is pretty common knowledge anyway. She has recommended me to a gynae and I will be checking in with one in a month's time !

Question - is it too late to only see a gynae in a month's time and should I push to see the gynae earlier ? Also, is there even any point to speak to my rad oncologist given how he is also probably clueless otherwise he would have mentioned it to me right at the beginning ?

I cannot believe how the medical professions can leave out such an important psychological impact !!! No kids, fine ! But painful sex here and onward, what the hell ?!? Apparently it could even cause problems with future vaginal examinations for other sort of cancers. How can such an important information be left out ?!

[weisssoccermom]

Good morning,
12+ years ago when I started my radiation for rectal cancer, the first rad onc I met with (he was a jerk) casually informed both of us about it. He didn't talk about it in a caring manner but rather winked at my husband and told us to have sex during treatment (or use a dilator) so that the vaginal stenosis wouldn't happen. His whole demeanor was NASTY! I switched to another rad onc who didn't mention it at all until I did (this was after about the 2nd or 3rd treatment). When I brought it up, he did acknowledge that this was a problem but flat out told me (and back then when I mentioned it on this board I heard the same reaction from so many female members) the docs don't want to tell you about this because well, you might not go forward with the treatments! Seriously? I could not believe how arrogant these doctors were. Did they truly believe that had we (females) known about the dryness, painful burning, vaginal stenosis, etc. that we wouldn't have done the treatments? That's another story.

Initially, I had found myself on an anal/rectal cancer group.....not knowing the difference (anal/rectal squamous cell carcinoma which is NOT the same...treated differently). However, that group taught me SO much. Those patients also undergo pelvic radiation and they all seemed to be aware of the painful vaginal symptoms that can and do occur. From them, I became aware that female patients were told to either have sex during treatment or to use a dilator to help keep the vaginal canal open and to stop the scar tissue from forming. There were even patients on there who used other things instead of a dilator which I personally wouldn't recommend. I learned from them to get Premarin cream from a doctor (Rx) to help with the dryness caused by menopause AND the dryness and thinning of the tissue caused by the radiation.

That's a background....now here's to your questions. The scar tissue buildup in the vagina....the narrowing of it.....and the accompanying dryness and thinness of the tissue has already happened. You really can't STOP it but you could have controlled it had the doctors been more forthcoming with you during your treatment. The thinness and loss of flexibility that is caused by the lack of hormones (menopause) and from the radiation (which by itself causes the skin to dry and thin) can be managed with something like Premarin. The narrowing which is caused by scar tissue buildup from the treatments, has already occurred and now you must go through the process to 'stretch' that tissue out. Problem is, if you think about scar tissue, it doesn't 'stretch' easily. I have personally not gone the dilator route as we had sex during my treatment to avoid this problem, but I have heard that it is a rather long process. You may be one of the lucky ones who has little to no damage....there's no knowing. Remember this though. Just like we want the radiation to continue doing its job to shrink the tumor (they say it continues for a good 6 weeks after we stop treatment), that same radiation likely continues to do more damage on the vaginal tissue.

I have a question....did you go through menopause because of the treatments? You said that the doctor told you you could get pregnant after radiation but did he/she tell you that in all probability you would go through menopause from the treatments? I was one of the weird ones that did NOT enter menopause due to radiation.....instead my periods got WORSE (they were bad enough before....worse was HORRIBLE). When I started my treatment at age 49, the idea of entering menopause was ok with me. I had had my kiddos and certainly didn't want anymore. However, I've learned on this board that many younger women were at least told about freezing their eggs before their treatments began. Did your rad onc give you this option??

In short, and I'm just being honest, whatever damage to your GYN tract has already happened and there's not much you can do about it at this stage except to be prepared for whatever has happened. It ANGERS me that rad oncs generally don't talk about these symptoms....some don't even bother to tell females that they may go through menopause. Just for the heck of it, I googled the term 'vaginal stenosis' and every definition included the terms radiotherapy or radiation therapy as causes for why it happens. Below is the definition from cancer.org (National Cancer Institute). These rad oncs need to wake up and be honest with females. They also need to give females education about potential things that females can do to minimize and/or avoid the damage caused by radiation. Best of luck to you.

vaginal stenosis (VA-jih-nul steh-NOH-sis)
A condition in which the vagina (birth canal) becomes narrower and shorter. The lining of the vagina may also be thinner and drier and contain scar tissue. This can cause pain during sexual intercourse or a pelvic exam. Vaginal stenosis is often caused by radiation therapy to the pelvis or some types of surgery.


https://www.cancernetwork.com/oncology- ... l-stenosis

https://www.uhn.ca/PatientsFamilies/Hea ... enosis.pdf

[MissMolly]

Check out these medical grade silicone vaginal dilators, which come in a set of graduated sizes.

http://www.vaginismus.com

Notice that the silicone dilators come in 5 different sized sets, from a beginning size # 1trainer set (dilator is the diameter of a pencil and narrower than a light flow tampon) to a # 5 advanced set (approximates diameter of carrot).

Medical grade silicone provides for a gentle material.
Karen

[Maggie Nell]

I cannot believe how the medical professions can leave out such an important psychological impact !!! No kids, fine ! But painful sex here and onward, what the hell ?!? Apparently it could even cause problems with future vaginal examinations for other sort of cancers. How can such an important information be left out ?!

It would be interesting to compare how men are counselled by the doctors regarding radiation etc impacting on their comfort levels and functionality
to what women are told, according to region, country and culture.

The information is left out because it's not important to them. Not their vadge.

[Jolene]

Hi Weisssoccermom ! Thank you for the detailed response and for those links ! See my answers in blue !

I have been reading up on some of your past posts as you were mentioned by someone as an advocate of understanding vaginal stenosis ! Thank you for sharing and contributing !!! I decided to check in with my rad oncologist just today and inquired about vaginal stenosis.

Surprisingly - he actually has some knowledge of it !!! But then why didn't he think of letting me know in advance! However, he said the radiation dosage he gave is too mild to actually cause any huge problem in my vagina - around 50 ? He then casually suggested to have more sex or use a dilator. I asked if I need to check in with a gyane for the dilator and he said I could basically use anything to enlarge the canal and even a dildo could work ! His response was oh-so-casual ! Had it not been for the boards here, I wouldn't even be in a position to pose the question to him !

Good morning,
12+ years ago when I started my radiation for rectal cancer, the first rad onc I met with (he was a jerk) casually informed both of us about it. He didn't talk about it in a caring manner but rather winked at my husband and told us to have sex during treatment (or use a dilator) so that the vaginal stenosis wouldn't happen. His whole demeanor was NASTY! I switched to another rad onc who didn't mention it at all until I did (this was after about the 2nd or 3rd treatment). When I brought it up, he did acknowledge that this was a problem but flat out told me (and back then when I mentioned it on this board I heard the same reaction from so many female members) the docs don't want to tell you about this because well, you might not go forward with the treatments! Seriously? I could not believe how arrogant these doctors were. Did they truly believe that had we (females) known about the dryness, painful burning, vaginal stenosis, etc. that we wouldn't have done the treatments? That's another story.

I know right ! Why would any sane woman not want to go through the radiotherapy treatment just because her vagina will get affected !!!? There is a huge difference between simply wanting to understand what is happening to the vagina vs resisting treatment !

Initially, I had found myself on an anal/rectal cancer group.....not knowing the difference (anal/rectal squamous cell carcinoma which is NOT the same...treated differently). However, that group taught me SO much. Those patients also undergo pelvic radiation and they all seemed to be aware of the painful vaginal symptoms that can and do occur. From them, I became aware that female patients were told to either have sex during treatment or to use a dilator to help keep the vaginal canal open and to stop the scar tissue from forming. There were even patients on there who used other things instead of a dilator which I personally wouldn't recommend. I learned from them to get Premarin cream from a doctor (Rx) to help with the dryness caused by menopause AND the dryness and thinning of the tissue caused by the radiation.

I'm going to get myself into a support group soon !! Hopefully I can be more aware of the situation !

That's a background....now here's to your questions. The scar tissue buildup in the vagina....the narrowing of it.....and the accompanying dryness and thinness of the tissue has already happened. You really can't STOP it but you could have controlled it had the doctors been more forthcoming with you during your treatment. The thinness and loss of flexibility that is caused by the lack of hormones (menopause) and from the radiation (which by itself causes the skin to dry and thin) can be managed with something like Premarin. The narrowing which is caused by scar tissue buildup from the treatments, has already occurred and now you must go through the process to 'stretch' that tissue out. Problem is, if you think about scar tissue, it doesn't 'stretch' easily. I have personally not gone the dilator route as we had sex during my treatment to avoid this problem, but I have heard that it is a rather long process.

We are both not in the mood for sex at this stage of my waiting / treatment hence I'm so anxious about getting a dilator ! Unfortunately, not everyone's sexual appetite is as good as you both ! How do you do it ?

You may be one of the lucky ones who has little to no damage....there's no knowing. Remember this though. Just like we want the radiation to continue doing its job to shrink the tumor (they say it continues for a good 6 weeks after we stop treatment), that same radiation likely continues to do more damage on the vaginal tissue. I just got news from my colorectal surgeon that the radiation continues to work in the body for up to 6 months !

I have a question....did you go through menopause because of the treatments? You said that the doctor told you you could get pregnant after radiation but did he/she tell you that in all probability you would go through menopause from the treatments? I was one of the weird ones that did NOT enter menopause due to radiation.....instead my periods got WORSE (they were bad enough before....worse was HORRIBLE). When I started my treatment at age 49, the idea of entering menopause was ok with me. I had had my kiddos and certainly didn't want anymore. However, I've learned on this board that many younger women were at least told about freezing their eggs before their treatments began. Did your rad onc give you this option??

Yes - the rad onc did mention the option of eggs freezing. We choosed not to go ahead with it as we have never been keen on kids so it made the choice of going for radiotherapy a lot easier, psychologically it sucks having that option taken away from me "by force". I have however come to terms with it and have accepted the situation as it is. I was however not made aware of vaginal stenosis and that's what gets to me.

In short, and I'm just being honest, whatever damage to your GYN tract has already happened and there's not much you can do about it at this stage except to be prepared for whatever has happened. It ANGERS me that rad oncs generally don't talk about these symptoms....some don't even bother to tell females that they may go through menopause. Just for the heck of it, I googled the term 'vaginal stenosis' and every definition included the terms radiotherapy or radiation therapy as causes for why it happens. Below is the definition from cancer.org (National Cancer Institute). These rad oncs need to wake up and be honest with females. They also need to give females education about potential things that females can do to minimize and/or avoid the damage caused by radiation. Best of luck to you.

It's scary that some do not tell females that they may go through menopause !!!?!? How do they even get away with it !

From experiences with my male rad oncologist and from what we have been reading on the boards, it seems like the vagina is something to be taken lightly (however unconscious) ! To put it bluntly, it is as though an undercurrent of sexism is at play ! The vagina is as precious to us females as it is a penis to a man ! Sure, staying alive and killing the tumour is important, but so is understanding what radiation is doing to the vagina and how we can take precautions ! My identity as a woman depends on it too ! I totally feel your angst !

[Jolene]

Check out these medical grade silicone vaginal dilators, which come in a set of graduated sizes.

http://www.vaginismus.com

Notice that the silicone dilators come in 5 different sized sets, from a beginning size # 1trainer set (dilator is the diameter of a pencil and narrower than a light flow tampon) to a # 5 advanced set (approximates diameter of carrot).

Medical grade silicone provides for a gentle material.
Karen

Oh thank you Miss Molly !! Wow - international shipping too ! I didn't realize they could be so readily available and kept thinking I have to go see a gynae to get one !!!! If it's sold online, I assume it's pretty safe to use without a gynae advice too ?

My rad onco (male!) advised that even a dildo could do the job, wondered to trust him or not !

[Jolene]

I cannot believe how the medical professions can leave out such an important psychological impact !!! No kids, fine ! But painful sex here and onward, what the hell ?!? Apparently it could even cause problems with future vaginal examinations for other sort of cancers. How can such an important information be left out ?!

It would be interesting to compare how men are counselled by the doctors regarding radiation etc impacting on their comfort levels and functionality
to what women are told, according to region, country and culture.

The information is left out because it's not important to them. Not their vadge.

Hi Maggie - I hear you !!!! As mentioned in my response to Weisssocermum above, I sensed an undercurrent of sexism at play on this medical condition !

[weisssoccermom]

Jolene,
First of all let me explain that when that first rad onc told me to have sex/use a dilator, the thought wasn't at all appealing.....even with his suggestive winks to my hubs. He explained that the sex didn't have to be drawn out or anything....just the act to help keep the vagina open was the important thing. So, nope this wasn't anything necessarily pleasurable but more of a quickie if you will.

Sorry but your rad onc is just flat out lying to you about the dosage to your vagina. What is he supposed to say now? Oh yeah, well forgot to mention that the amount of radiation may very likely have a negative effect on your vagina and hence your sex life? Prior to starting my radiation treatments, I had been asked to meet with a Dr. Goff from the UW (University of Washington). She is a GYN ONC who is a specialist in ovarian cancer. At the time, I was thinking about having my treatments at UW/Fred Hutch Cancer Center and she was all about taking out all of a woman's reproductive organs during surgery.....just because you're in there. At any rate, she DID mention the side effects of radiation and the vaginal stenosis....although at the time I was still in shock about the whole idea of taking everything out. (Didn't go with UW and said NO to taking out ovaries/uterus, tubes, etc.) My point is that I believe for women who are undergoing treatment for GYN related cancers who are also receiving pelvic radiation, the doctors are much more open about possible side effects. I mean you're dealing with the entire reproductive tract in a female so they are likely going to be more honest. About a year after my treatments were over, the Deacon in our Church was diagnosed with prostate cancer and he was going to also be starting pelvic radiation. He knew that I had had pelvic radiation and asked for some tips. Funny how he was warned about male related side effects, the diarrhea, burning, etc.......things that no rad onc had told me about! My sister-in-law was recently diagnosed with rectal cancer after having what she thought was a routine rectal lesion removed. No one thought that it had cancer in it but the pathology report came back with some residual cells. They recommended radiation and NO ONE told her about the possible side effects. NOTHING! She was already in menopause but no one said anything about the dryness, the burning, the diarrhea, etc until AFTER the fact. She ended up spending 6 days in the hospital AFTER she had completed her treatments because of radiation complications....many of which I believe could have been avoided had the rad oncs been more PROACTIVE instead of REACTIVE!

At this point in your journey, I would highly suggest that you get yourself a set of dilators (look on Amazon as well) that has many sizes. I learned from the other group (internet group) that most women who waited ended up starting off with a dilator the size of your little finger. It will take time to try and 'stretch' the tissue ....not a few weeks but months if not longer. Don't rush it. However, I will add that you have to get something like Premarin (KY jelly doesn't do enough) to help the tissue become a little more pliable. Lubrication isn't enough. Don't take NO for an answer unless you have a family history of estrogen related cancers. Yes, creams like Premarin do contain estrogen HOWEVER, the amount of estrogen absorbed by your body topically is NOT the same as taking hormone replacement pills.

I'm sorry that you are going through this. It frankly sucks that the doctors treat females this way as though our sex life is meaningless. It's difficult enough going through the issues with menopause to then think that you have this other 'silent' issue that no one told you about.

[lakeswim]

Don't get me started on this whole RAD ONC female denial train. I could go on forever.

(Many thanks to weisssoccermom for bringing this up here so I could ask my RAD ONC about it last year.)

First, and especially if you have pain, I really liked my initial dilator - recommended by my pelvic floor specialist. Soft silicone. You keep it in the fridge and it's cold and feels nice on the inflamed tissue. Self-lubricating. Pricey, as it only "lasts" 6-8 weeks. Also, it was graduated - which is good if you have to start small, but I had no pain, so I wanted one that dilated all the way up. (It was designed by a husband of a patient.)
https://www.cmtmedical.com/product/cool ... arter-kit/

I also read somewhere that the dilator should be rigid/harder in order to help with dilation. So, after making a big deal out of it (it was never offered to me initially) with my RAD ONC office (*more on that later), I received a (FREE!) pack of hard dilators (Syracuse Medical) that come in graduated sizes.

But I am seeing a pelvic floor specialist and she said I should get a curved one - as this shape reflects more accurately what happens during intercourse. I have a link to a website for that - but I have to find it. www.tantusinc.com ("Silk" product) I still need to order that one! (Thanks for the reminder!)

One thing that I am experiencing now - 10-12 weeks out from radiaion - is the first UTI of my life. I suspect (and my pelvic floor person agrees) that my urethra has stenosis, which is causing the problems. I'm on antibiotics. We will see if the drugs help, if it comes back, etc. etc. I hope it doesn't, but if it does, I'm not sure what I will do. My PCP said I'll need to see a urologist. It wakes me at night and I have to pee constantly. Not as much pain now as initially - but WTH?

Based on this, I think the stenosis must be at it's peak now. And I read somewhere that we patients need to dilate (or have sex) for our lifetimes as the tissues will always want to shrink.

MY RAD ONC OFFICE DENIES THAT THE UTI IS - IN ANY WAY - RELATED TO RADIATION. The (male) nurse said "radiation side effects dissipate 2 weeks after radiation ends." He actually sent this statement to me twice when I pushed back. (Then why are we allowing radiation to continue to work on my tumor? Hmmmm?) I also have achey hips and legs, which they also deny has any relation. I don't know what's worse - the achiness or the UTI.

*The only reason I was able to get the Syracuse dilators was that they had a female PA rotating through and she was very open to hearing my issues. She agreed that all female patients receiving pelvic radiation should at least get INFORMED (a handout, perhaps) about the possible side effects to their pelvic parts. They should be offered dilators without knowing to ask. Such dilators should be covered under insurance. Patients should be referred to pelvic floor specialists or special GYN. She also agreed that if males were treated this way ("Don't worry, your penis may not work anymore and it may hurt - but maybe not. Whatever.") that a great fuss would be made.

Personally, I wish I could see a GYN ONC to discuss this with as they may have better ideas about managing the side effects. When I went to Cleveland for a second opinion, the radiation oncologist there was a young female and she IMMEDIATELY brought up vaginal stenosis (whereas my male providers in my city did not). I had to come home and bring it up with them and then listen to them shrug it off - like yeah, maybe. My RAD ONC and my ONC are not open to allowing me to see a GYN ONC. (My Onc nurse went so far as to say, "You are older since you were diagnosed. Aches are common when you are getting older." ARG!)

Anyway, these issues are REAL. Unfort., so is the RAD ONC attitude towards female patients.

Again, thanks to the women here (weisssoccermom and others!) who sound the alarm for the rest of us just starting this journey.

[MissMolly]

Jolene:
And, really, any woman with effects of radiation or treatment related menopause with vaginal dryness and stenosis . . .

I went into pre—mature menopause due to Pituitary failure. It was not a subtle transition but rather an abrupt cessation of hormones and full-force menopause much as some of you may experience as an unwanted effect of cancer treatment.

Weisssoccermom brings up a good point about topical/local vagina use of Premarin (or estrogen equivalent). The benefits of local estrogen replacement will outweigh the risks for the majority of women. The external labia and internal vaginal tissues need the “nourishment” of estrogen (and progesterone).

Use of lubricants and over the counter hydrating products can be counter productive. The added moisture leads to an overly moist internal vaginal environment rip for fungal and bacterial overgrowth.

Use of topical/local vagina and external labia hormone replacement can be considered a safe means of treatment abrupt menopause. The effects of topical hormone replacement are localized without widespread systemic uptake. You can use just the amount of topical hormone that you need. And you can decide on how long to continue its use. Like many choices we make in medical care, deciding to use hormone replacement is not an all or none decision. Dosage, frequency of use, and duration of use are variables that can be adjusted for each woman and her experience.

But know that hydration/lubrication products available are not substitutes for targeted hormone replacement. Overly judicious use of hydrating products can bring about fungal and bacterial overgrowth that only adds to the miseries of menopause.

In my case, I used a pharmacy-compounded cream of estrogen + progesterone for about 12-14 months. Application was via an applicator that was the width of a match-stick as my stenosis was almost complete. A tad of cream to external tissues also gave me relief.

The silicone dilators that I referenced I do personally endorse. The beginner’s set (smallest diameter) is designed for someone with a seriously stenosed vagina or vaginal opening. The silicone is soft and subtle and offers a material that does not further tramautize already fragile tissue. There are no added BPAs or parabens or chemical materials that could add to tissue distress. You can go to the home page web-site to learn more about the specific Vaginimus product and clinical reviews.

Hormones, including estrogens and progesterone, are powerful chemical messengers. Supporting the health of your vagina during an onset of menopause will also influence your sense of body-well being, mood, and thinking. Use of topical and local hormone replacement can be a short-term and beneficial option for women to consider in discussion with their physicians (caution would be for women with BCA and/or triple negative breast cancer markers).
Karen

[weisssoccermom]

Lakeswim...with respect to the hip achiness.....I was told by my rad onc (mind you, ONLY after I brought up the issue and showed him literature that I had found from Australia) that yes, it is a known fact (then tell us please) that pelvic radiation can damage the hip area resulting in a higher incidence of hip replacement surgeries in patients who have had pelvic radiation than anything else. WHAT?????
Why is it, when it comes to cancer treatments, that there are so many side effects, residual damage issues, etc. that unless WE bring them up are NEVER told to us! Don't get me started as it makes me SO ANGRY!

For example, long after my radiation was over, I was still having my periods and they were AWFUL! I had always had heavy periods but these were now something out of a horror movie! Honestly, the idea that radiation would throw me into menopause was welcome for me.....it would give me the added benefit or stopping my periods but alas that didn't happen. Ok, so my ovaries must be higher up than normal and didn't get zapped. I could live with that but no one offered me any help. I had tried BC pills throughout the years will no luck OR I was so sick from the high doses of hormones in them that the whole experience was intolerable. So, a month after stopping radiation and with these closer together and AWFUL periods, I sought out my GP for help. She Rxd me a fairly new and supposedly different type of BC pill called YAZ. Apparently though (and she wouldn't know this but she did consult my onc), ANY type of BC pill and chemo don't 'mix'. A cancer patient is already at an increased risk for blood clots...then you add chemo (I was on Xeloda at the time) to the mix and your chances of clots increases dramatically. Now, let's throw in BC pills and OMG! I ended up in the hospital with 12 or 13 clots. All but one were mild and were not life threatening but I did have a DVT in my upper arm which was alarming to the doctors. I don't blame my GP as she consulted with the onc. However, I was upset with my onc especially after I heard from the hospital pharmacist on the day of my discharge. The pharmacist happened to be a family friend (keep in mind this is not your CVS pharmacist who generally doesn't Rx chemo) who asked me WHY I was on YAZ. He was incredulous that my onc would have allowed me to take it knowing that it was NOT a good combination with Xeloda. Now, how was I supposed to know that? I ended up with a 3 day stay in the hospital, a whole bunch of nasty Lovenox shots both in and out of the hospital and then went on Warfarin for a few months. My point with this is simple. If I had known to go to the family friend (never thought of it) and if I had thought to ask the right questions, then likely as not, I could have avoided that whole debacle. The same thing applies with respect to radiation side effects. How many of us have ANY idea beforehand what the side effects might be? We don't. We rely on the doctors to be open and honest about all of them....even the not so nice ones.

I want doctors to tell us about the side effects....to inform us about ways to minimize them/avoid them.....I want doctors to be PROACTIVE instead of REACTIVE. It's great that doctors can prescribe pain meds for the pain but how about giving us tips/hints (seriously they know about things that might help) that we can try so we don't NEED them to write script after script? For example, I learned from the other group that having your radiation done with a full bladder (unless told otherwise) helps to alleviate some of the damage to the bladder AND helps to push the intestines out of the way of the most damaging treatments. My rad onc never told me that.....but, when I mentioned it to the technician, she agreed. I was told to make sure my skin was clean and free of any lotions, creams, etc before each treatment but no one ever told me to slather myself AFTER each treatment. No one told me that a simple thing like glycerin soap was FAR SUPERIOR to something like Dove. These were things that I learned on my own. In addition, too many people believe that if you tell them something that your doctor didn't, it must be wrong. My SIL learned that the hard way.

We, as patients, people who are expecting to live after cancer, have a right to know what the side effects might be and doctors should, IMO, be respectful of that and recognize that most normal people who want to live aren't going to say no to treatments that can cause some unpleasant side effects. I want my doctor to be more than someone who can 'cure' me. I want my doctor to be someone who cares about my QUALITY OF LIFE....both during and more importantly AFTER treatment!

[lakeswim]

Amen! And what a story you have to tell!! Xeloda is nasty stuff. I can’t believe that BC decision was made so cavalierly.

I saw the posts about having a full bladder and asked my RAD ONC 2x whether my bladder needed to be full and he said NO.

And since I had such bad diarrhea, I had to be careful of drinking/eating prior to driving to radiation (to avoid losing it in car) and went to bathroom right before (so I didn’t lose control on the table) so I’m sure I had an empty bladder. And look where that got me.

They say not to read online forums but I don’t know where I’d be without this one!

[weisssoccermom]

I thought....no I hoped it had changed from when I was in my treatment (2006). I can see from some of the concerns here and listening to my SIL's issues that too many doctors (particularly rad oncs), IMO are not putting the interests of their patients FIRST. For example, I used to hear around the time of my treatment that rad oncs were routinely telling patients that IF side effects happened, then they...the doctors would prescribe something to treat that problem. Ok, that's fine BUT if you can do something ahead of time to either minimize/avoid the side effects, why wouldn't you?

I liken it to this. WHY would a person go outside in the worst part of a sunny day, lay on a beach without sunscreen? Sure, they could do it, get badly burned and then a doctor could prescribe something to help the patient alleviate the pain. I don't know of ANY doctor who would do that. However, I don't understand WHY so many people have to have issues with their rad oncs refusing to give their patients some tips....some advice for helping to alleviate the pain BEFORE it gets to the point where you need drugs to control the side effects. I realize that my SIL's problems are severe and certainly NOT the usual issues BUT.....for a patient to have to be hospitalized one week AFTER treatment has ended for severe dehydration (she was given IV's every day during treatment....again not normal)....for her skin to be literally burned to a crisp and hanging.....why didn't the rad onc STOP the treatments earlier and say ENOUGH IS ENOUGH!!! I could go on with the things this rad onc told her (he's with a major cancer center) that are just plain STUPID and, IMO....irresponsible!

In short, we, as patients need to stand up and say ENOUGH! That's easier said than done, though. When we are diagnosed, we are, for the most part, clueless as to what is the best thing to do. We put our faith and trust in our doctors and most of the time, don't question them. I was fortunate to have a wonderful onc and GP who were amazed at how few and mild my side effects were. My rad onc couldn't have cared less. However, my onc's practice asked me to help write down the tips for surviving radiation treatments and keep in at their practice. I've since heard that those tips are now incorporated into a brochure that the rad onc's office utilizes. Finally, I remember during my treatment when my anus started to burn....the rad onc told me...'oh btw, the THREE places on the human body which bear the worst brunt of radiation are: the nipples, the anus and the lips." Geez, thanks. I have to wonder ...do they tell breast cancer patients about the breast nipple issue?

If I ever have to have radiation again, I will go in armed with a totally different attitude. I will have trust and confidence that my rad onc knows the best angles, best amounts, etc. to give me HOWEVER, I will not assume that he/she will be telling me all the facts before I start.

[lakeswim]

I wonder.... reading all of this makes me think that where your radiation is targeted really affects your side effects. (Obviously, right?)

I read here that it would burn when I had a BM. It didn't burn - and didn't hurt. Didn't use a squeeze bottle once. (I used wipes a few times - just for very minor irritation on one bad diarrhea day.) Also, I thought my skin would burn where the beam went. No skin irritation that I noticed.

I had on/off lower GI pain near the end and my clitoris was sore when I wiped during later radiation. But my vaginal canal was not painful after radiation was done.

Now - 10-12 weeks later - I may have stenosis of my bladder or urethra (and should have filled my bladder like folks here recommended, but my RAD ONC told me not to).

So, there is definitely a laundry list of things you can do to prevent side effects and you'd think they could make somewhat of an educated guess as to what will affect you, given where the radiation is hitting. Or just give you the total list. But they don't.

It's truly infuriating. Thank goodness for this forum!

[Jolene]

Hi ladies - thank you for all the replies, personal stories and links !!! I would definitely still be in the dark about VS had it not been for this board !!! Will get my dilators soon.

Re: Having sex as a solution for VS
My rad onco just casually mention to have more sex like as if that's a given. I mean... I just got diagnosed with cancer, having sex isn't really our top priority at the moment !!! Then what ? Had it not been for the boards, I wouldn't even know dilators is an option.

Re: Hip ache
I complained about my hip stiffness to the rad onco just recently. He did a few leg tests with me to make sure it was not a bone/joint problem or cancer ! Apparently if it gets better throughout the day then it's inflammation which should go away with time and painkillers. And yes - radiation inflames anything that gets in its way. He also mentioned about the higher chance of hip replacement and that it's probably a concern in perhaps 10-20 years time and there is nothing to worry for now.

Seriously !? I think I should be told of everything be it now or in 20 years time ! And if I had not brought the hip stiffness issue up, I might still be in the dark for goodness sake !