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UPSC and hormone cream

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Big post-treatment check-up day for me, with my 1st apppointment with the newly-hired head of Women's Health, and their new Gyn-Onc. He has my head spinning with new information, as he has decades of experience working with UPSC. I could hardly wait to get back and post to run all this by you and get your feedback.

First of all, this gyn-onc is a FIRM believer in tissue assays prior to chemo, and says he will establish that as standard practice for UPSC patients at Geisinger Medical. (YEH!) He said the tissue samples from my surgery are no longer frozen, but would at this late date be in parafin, but that possibly the 'block' could still be used for genetic analysis (no promises.) He said that even if I was HER 2/neu positive that he would never give me Herceptin while I was in remission.

This gyn-onc seemed surprised that I'd had pelvic radiation, and said that CHEMO (carbo/taxol) and lots of it, is what is now the accepted Best Practice for UPSC, with brachy as the only radiation he probably would have recommended for me (WHAT??), at my Stage III-c. This is because the cancer found in my body was 100% UPSC, with no mixed cell types. He said that since my cancer was only microscopic in a single lymph node, that MY Stage III-c was at the very best end of the III-c spectrum with cure/5-year survival rates in the high 70's percentile.

The other mind-blower that I need feedback on, is that he gave me a prescription for HORMONE cream to use 3 times a week with my dilator. I told him that I thought hormones were a No-No for uterine cancer. He said "not if your cancer is 100% UPSC with no other types off cancer cells mixed in." He said that UPSC does not develop from endometrial hyperplasia and is not hormone-sensitive, rather it arises from an atrophic endometrium. UPSC belongs to the type II endometrial cancers and that use of hormones would not feed UPSC cells and would improve normal sexual function. What do you think? I know that if I had mixed types of cancer cells that hormone cream would be bad, but could he be right that hormone cream may be a good option for me since I am 100% UPSC?

My new Gyn-onc's other comments on dilators: He believes all women who have had pelvic or brachy radiation should use a dilator DAILY, and to plan on having sex every single day for the rest of your life is probably unrealistic, and he thinks dilation is a necessary DAILY exercise. He said he wants me to use the hormone cream on the dilator 3 days a week, and use the dilator every day.

I had to get totally nude and was checked under the arms, breast exam like you would give younself, digital rectal/vaginal check, legs checked for any nodes and swelling. He said I needed to wait 3 full months after radiation before having a reliable PAP test and made an appointment for me in November. We talked about PET-scans, but he said something would have to show up on a CT-scan before he would order a PET-scan, and that he would be reluctant to do it because of the high incidence of false-positives.

I had bloodwork and my RBC and WBC and platelets were borderline normal but still pronounced WONDERFUL for this soon after radiation. I had a CA-125 drawn, but won't get the results until tomorrow. The onc said if it goes up, it will be from the recent radiation and he will disregard it, so I'm not to stress. (My March 26th CA-125 was 11, for reference). I'll let you know what it is once I get it.

Whew! So much new information!!

california_artist
Posts: 850
Joined: Jan 2009

Ah?? I don't mean to be flip, but was there a nurse in the room?
Do you think the guy's got a screw loose what with all the daily dilators sex talk?

Gunhild's picture
Gunhild
Posts: 37
Joined: Jul 2009

Brachytherapy can cause the vagina to close up. Even if you don't want to be sexually active you need to use the dilator to enable a gyn to do an exam. Use of a dilator is pretty standatd after brachy.

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Thanks, Linda, for the UPSC treatment protocol update. I saw my rad/onc today. At MY request we discussed the possibility of adding pelvic radiation to my treatment plan. He is doing a little more checking and will get back with me by phone in the next couple of days, but we are both leaning toward adding just the brachytherapy to the chemo. Your new info supports NOT adding the pelvic radiation. My current plan is to have the brachy treatments Aug 24, 27, 31 and Sept 3, and have chemo #4 Aug 26 if my labs on the 24th are OK. I see the gyn/onc on Aug 25 to discuss the labs and how I am feeling.

I am so glad to have your new info just as I am trying to determine the path ahead of me. Thanks, again!

Sally

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Wow Linda, that is some amazing info... Thanks. My gyn/onc gave me the same work over. Doesn't make me uncomfortable anymore after all we have been through. I think I could run naked in the street and it wouldn't bother me! hahahahahahaha!

I have been thinking about calling my rad/onc for a dilator. You were very smart for getting one. I will start to hurt in the area where I had radiation if I go three to four days without intercouse. Strange.... When that happens I need my physical therapy! ;) I also use Replen every three days.

MIND, BODY AND SOUL!

Hugs.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'll be glad if you ladies that had brachy get dilators and start using them daily; I think my sex life is back to normal because I do that little daily exercise. But the addition of the hormone cream has me a little concerned. I think I will call my radiation oncologist and just run that by him before I make that change. I will have to think of a way to not start a riff between him and the new gyn-onc; especially when it looks like the new gyn-onc disagrees with the pelvic radiation I was given. That's done and cannot be undone, and I don't see any long-term side effects in my digestion or bladder or anything, so I have no regrets anyway. But I haven't been able to find anything specific on the hormone cream. Maybe after I actually go to the drug store and pick up the prescription they emailed in, I can Google the name of the actual hormone and get something definitive to help me decide whether to use this. I know that UPSC is a Grade 3 Type 2 cancer cell type. This gyn-onc says that patients with Type 2 cancer cells benefit from the use of hormone creams in keeping their vaginas in a more natural healthy balance. That was just such a NEW idea to me (maybe not new to everyone, but to me) and I am hesitant to take the advice of a gyn-onc I just met over one I have been working with for months.

Do the rest of you continue to meet with the gyn-onc that did your surgery? I had my surgery at a distant facility, and have not seen my orginal gyn-onc since my post-surgery appointment last fall. My chemo-onc (the optimistic sweetie that called me on a Sunday with my CT-results) considers himself my PRIMARY oncologist,...or did until this gyn-onc was hired 2 weeks ago (???) I am thrilled to have a gyn-onc locally now, as chemo-oncs and radiation-oncs are 'generalists' that work with cancers throughout the body. A Gyn-Onc's specialty is so narrow, that you would think he would be the most up-to-date on gynecologic cancers. And this Gyn-Onc has a more prestigious position than the other members of my oncology team, named the new head of Women's Health. His opinions are just so different than what I have assumed, it makes me question whether he is AHEAD of the conventional wisdom, or behind it.

I did LOVE his optimistic survival stats, and his determined stance to make tissue assays routine for UPSC patients! And I like his bow-tie-wearing quirky personality; his 25 years of experience; and the fact that he spent over a half-hour with me. There were 3 other women in the room during my exam; clearly he is a big shot at the hospital based on the level of assistance he commanded throughout my appointment. I didn't find the dilator conversation strange, as I already use a dilator daily, but I made the decision to do that myself. I just wanted to share how IMPORTANT he thought dilators were for every woman who has had brachy, since most women posting here have said their radiation oncologists glossed over that detail or didn't even bring it up. Sorry if I made him seem wierd; he wasn't. Like Marge, any modesty I ever had is long gone.

deanna14
Posts: 734
Joined: Oct 2008

I think maybe the difference in my doc's view on the hormone cream and your new doc is that my cancer was mixed uterine papillary serous and adenocarcinoma. Sounds like your new doc has a lot of experience with UPSC and if your cancer was 100% UPSC then it may be okay. I would probably do some research and check with your rad/onc and maybe even call your gyn/onc that did your surgery. It sounds like you had a good rapport with the old doc and could call and ask his opinion. You wouldn't even have to tell them that the new doc prescribed it. You could just say that you had someone tell you that you could use it. Seems like if that is the case, you should be able to take hormone replacement. Keep us updated on what you find out.
I don't think that exam sounds funny. He has never seen you or examined you and was doing complete initial exam. I think that is a good thing. Maybe I am becoming indifferent to all of these physical exams. Like Marge said... we could probably run through the street naked after all the violations we have experienced. LOL.
I totally agree with you about the vaginal dilator. After listening to you talk about it and the few comments from others, I think I will be contacting the rad/onc to get a dilator. It is kind of a touchy subject with my husband, but he is just going to have to understand that I am doing it as much for his benefit as mine.
I like his statistics a lot better than what I read or hear from my doc. My gyn/onc is so negative that sometimes it is hard to keep a positive attitude.
Thanks for all the good info.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

My gyn Onc said that trend is just brachytherapy. My intestines have looped over the vaginal vault so I am having six treatments but at lower doses and it will equal the total dose needed. There are different ways to do it to protect the body. I will not be using estrogen cream because I have had breast cancer. I have no problems with replens and external lubricants. I am not sure if women who get USPC are also at risk for breast cancer. It's so much to keep up with. We all have to realize that treatment changes with time. What I got for breast cancer ten years ago has quite changed now. My Gyn Onc also said the most important treatment modality for USPC is chemotherapy. I am coping with neuropathy and taking pain pills twice a day and cymbalta which I have found to be helpful. I couldn't take neurotin.

Diane

MoeKay
Posts: 63
Joined: Feb 2004

Linda:

I imagine that if you lined up 6 gynecologic oncologists and asked them about the radiation for UPSC issue, you would get 7 different opinions. This is just based on my experiences (not UPSC-related) over the past 10 years since diagnosis. I've had gyn-oncs tell me I didn't need radiation given my risk factors, while the studies have not been that clear and all had limitations that make generalizing from them difficult. And that is for endometrioid uterine cancer, where there are larger populations to draw from.

My sense is that with UPSC, given the small patient population, a lot has been done based on clinical judgment, with each gyn-onc swearing that what he/she does is the correct approach.

If it were me, I would want to have a second pathology review of the tissue samples before I considered hormones. I had a second pathology review done after my surgery, because my gyn-onc didn't agree with the first pathologist's staging of my tumor. While your pathology report may indicate that your tumor was 100% UPSC, I would want to be sure that is the case, before proceeding any further with the decision-making analysis. It's no secret that, like gyn-onc's, pathologists often disagree with each other on categorization of specimens. If it turns out that a second pathologist (preferably one specializing in the review of gynecologic pathology) agrees with the first, you can then get further input to assist you in making a decision. Perhaps you can touch base via email or phone with your first gyn-onc to get his input on the issue.

Good luck and best wishes for continued good reports.

MoeKay

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My original pathology was done at Hershey Medical where I travelled to have my surgery done. Now that you mention 'second looks' at pathology, I wonder if Geisinger Medical simply took Hershey's analysis 'as received', or if they had the slides and tissue re-evaluated at the time I came for my chemo. I'll bet they never did their own analysis of my pathology, and maybe that will give me some leverage in getting them to look at it now. I'll see what I can make happen. I need some strong reassurance that I didn't ever have ANY other kind of cancer cells other than UPSC before I start using the Premarin Vaginal Creme with my dilator. I picked up the prescription and the leaflet inside reads "Estrogens may increase the chance of getting certain types of cancers, including cancer of the breast or uterus. If you have or have had cancer, talk with your healthcare provider about whether you should use Premarin Vaginal Creme."

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Linda, Thanks for all the information. It's like getting a virtual second opinion for me.

It sounds like This doc must be very well respected in the field. He has validated my doc's practice which makes me relieved that I was not Under-treated - a slight nagging fear I admit I had since I am in the minority here - chemo but NO radiation for me with Stage 3a UPSC. I had the profiling done before chemo and the hormone testing was ordered - so it sounds like my doc approaches things like yours does.

It would be normal to be confused after getting this info at this stage in the game. It sounds like you are asking the right questions. I have one for you. What was his rationale for the hormone cream - what benefit are you supposed to get from it versus NOT using it????? I didn't see that in your posting.

Hang in there. Hugs and blessings to you.

Mary Ann

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

The new gyn-onc seemed surprised that I wasn't already prescribed the hormone cream, as he prescribes it for all women who have had brachy that do not have Type 1 cancer cells (that's the very small % of us that are 100% UPSC). He said that it provides for a more naturally balanced environment in the vagina and that added 'health' cuts down on infections and tears and discomfort. (I actually haven't had any of these problems, but he seemed to think you should stay ahead of problems down there, and seemed to anticipate there might be problems because of the brachy.)

Here's what it says on the paper that came with the Premarin Vaginal Creme:

Premarin Vaginal Creme is used to treat moderate to severe dryness, itching and burning in and around the vagina.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was told when I asked to have a CA-125 test done that it would very likely be slightly elevated this soon after the radiation. And it was. I got the results today and it went up from the "11" I had in late March (my last chemo & last CA-125) to "26" at my 6-wk. post-radiation check-up. My chemo onc said all he was looking for was a number within the normal range (under 36) and it was. So, unless it goes upo again in November, I will not worry about this. (I hope anyway. I will try NOT to!)

Patricia: I think my new gyn-onc was just trying to make a point that women who have had brachy need DAILY dilation; and that those who hope to do it the 'natural' way (AKA intercourse) have unrealistic expectations (UNDERSTATEMENT! Unless your man is 20 or something!! HA!). He thinks all women who have brachy should use a dilator daily.

Are you considering that clinical trial? Is it just for Stage 1 UPSC? Youe stats make 'observation' seem a very scary choice. Is that your decision? ((((Patricia)))) We will never second-guess anyone's personal decision. But 'obsevation' would be a hard choice to make with those kind of stats staring you in the face.

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