Endometrial Pre-cancer- hormones, IVF and Surrogacy

I am 37 and after a year of megace treatment, cancer was still showing in my pathology and my TAH was set for November 13. Late this summer, I sent off all of my medical records to another cancer center for a second opinon. The opinion came back and they stated I was responding well to the therapy and would argue that the cancer is no longer there.

My oncologist is sending my records to a yet another center for a 3rd opinion! It's always worth getting another set of eyes to look at all the records. My onc/gyno even pulled another woman in the same situation until this has been resolved!

Myic, I think your experience is important to highlight that the decision to call cells cancer or not is a subjective one made by a pathologist. A general pathologist might give a different reading than a real expert. Expert centers at top oncology centers like MD Anderson and Johns Hopkins have pathologists specialized in endometrial tissue that might give a different reading. The option of having a second (even 3rd) pathologist opinion is an important one in making fertility-sparing decisions because the stakes are high.

In the end with all of this it is important to realize you're buying time (to try to have a baby) not changing the need for a hysterectomy.

I looked really carefully into Megace treatment (and was approved for it) but the failure rate seemed too high (less than 50% are deemed cancer free at 6 months, and about 1/3 aren't clear after 1 year) and the timing was too long (you need to count about 3 months after a 'clear' D&C before you'd be full-on into IVF. At my age (almost 41) that time lag wasn't going to get us to the goal of having a baby, so the time + the failure rate (and the 5% risk of cancer progressing during Megace anyway) pushed me over to the decision to have the surgery now. If I was younger I *might* have taken the risk, but not at 40 (plus the failure statistics do concern me - especially because I don't have 'typical' etiology for endometrial cancer (I am overweight, but I ovulate normallly).

All my doctors agreed to do one round of IVF for egg collection before the surgery (all embryos will be frozen for use in a gestational carrier) - I'm in the middle of doing that right now. (FINGERS CROSSED!!!!) Surgery will be the following cycle, once blood flow returns to normal.

Ahh! That's what I am doing too! I am set for egg retrieval on Wednesday. Aren't all the trans-vag u/s great?! haha blech! I have 20+ eggs growing, and from the u/s yesterday about 15 fatties! They are attributing the large number partially from my PCOS in the sense that I never ovulated so I must have gajillions of those little guys up there. Nonetheless, I am glad to have so many in one shot . If it does turn out to be cancer, we'll get the TAH and save money for a gestational carrier (or buy another dog and call it a day, haha).

Guess where my second opinion was from? Johns Hopkins! I am in Canada and am attending what is considered to be the top cancer center (Princess Margaret), but I am so glad we chose the route to get a second set of eyes from a center that specializes in gyno cancer. My doctor recommended a second opinion, but offered up one of her collegues. It just didn't seem like that was "far enough" away from the source. I am guessing they would have taken the same reading from the same pathologists, which is what seems to be the issue in my specific case.

I realize that we're "buying time" with this route and that a hysterectomy is inevitable, but I sure did want to at least try to carry my own child and have that life experience. I am pracical, though and realize it's a long shot but since most of it is covered by insurance and the cost nominal to me, I figured I would regret it if we didn't try, at least for awhile. I know how you feel in that every month is closer to an age where it's no longer a sensible decision. I feel like I am begging with my oncologist sometimes. Please? Just one more month?

I am so glad they let you do an IVF retrieval cycle. I have heard of some women where it had advanced as such where they had to do the surgery NOW and that option was lost to them. I feel very lucky to have the opportunity.

Ok, gotta run to my next appointment. Have a terrific day and thanks for responding to my post!

Melissa

Melissa, I am so happy to see your message - I have felt SO ALONE in going this route.

Are you doing Megace in hopes of being able to conserve your uterus long enough for a pregnancy? I've decided that is too risky for me - I'm having the egg retrieval and then the hyst in early November, we'll use a gestational carrier. But like I said, I'm older than you are and I don't have a "classic" etiology so I just dont feel that trying Megace is a good choice for me.

Where are you going for your 3rd opinion? Did Hopkins call it cancer or CAH? Who did the reading at Hopkins?

You're lucky to have good insurance coverage in Canada. I'm covered on the Ca front but we're on our own for the IVF & gestational carrier (and it's SPENDY).

I would love to keep in touch with you since there are few of us on this same path.

Good luck for the retrieval this week! So exciting to have such a good response. Are you freezing all embryos?

They were scheduling my TAH several weeks after the cycle to allow my ovaries a chance to "rest" before the surgery. I am, however, not sure "why" they need to rest, especially if they are taking those too, but I imagine it could pose a risk or complication somehow. I suppose egg retrieval is a surgery-esque.

Hmm, I am not sure I am on the Cancer Protocol... I'll have to ask about it when I go in. I think I was on a full meal deal Lupron/Repronex/Gonal F protocol. HCG at midnight tonight with an 11 O'clock Wednesday retrieval appointment.

Round... yes, the only reason I am doing megace is to preserve my girly bits in hopes of carrying a child. I think once you've been diagnosed with endometrial cancer (or even hyperplasia with atypia) you'll need to get a hysterectomy at some point. The risk is too high... and what cancer patient when offered wouldn't take the chance of "getting rid of it completely" with surgery. We are offered a chance that not many cancer patients get.

I know what you mean about being alone! I feel like I have been swimming these waters alone for awhile. My oncologist says that out of all the thousands of gyno patients they see a year, there are only 2-5 of "me" that they see. Because of the low volume, there isn't a lot of support, nor a lot of treatment options. The Megace protocol is relatively newish in that it might have been around awhile, but there aren't a whole lot of test subjects, so there's limited work on it. Most of the women that get this type of cancer are 50+, so seeing it in 30s (and even early 40s) is uncommon.

<OOPs doctors names mentioned>

I am unsure if I should seek my own third opinion. I am tempted. My RE gave me a name of someone "she would trust her uterus to" lol. I wrote him today, but unsure if I should just pass the name to My onc, or seek it independently.

Hopkins called it Hyperplasia without Atypia. This is significantly different than what my team came up with (persistent Cancer Figo 1). I was on Megace for 1 year and then high dose Provera for the last 3 months (in order to cycle the lining since I had only been getting biopsies and not D&Cs).

It was funny when I took the prescription for the provera to the pharmacy. They had to call the doctor to confirm it was such a high dose. Usually 2.5-10mg are prescribed, I was prescribed 200mg! The pharmacist couldn't believe it, haha.

Megace was hard to be on, truly. I felt hungry & tired (brain fog) all the time and after putting on 30 pounds, I learned to seriously regulate my eating. I ended up losing that weight and 35 more pounds! I have tapered off and taking a break from the strict eating (not by much, but enough to have a little fun... like bananas and peanut butter). With the PCOS, I have learned that carbs are not my friend (sniff sniff). Low carb eating has become the way of my life. Not all meat and nothing else, but definitely no bread, pasta, rice, processed food or sugar. It took my spouse and I 6 months to do the transition, and we even gave up dairy (as soon as we gave up dairy, we both dropped 10 pounds). Once my weight is down, we'll switch to more of a low GI diet (which will allow some pasta and sweet potato, etc).

Ok, I have written a book. Talk to you both soon! Would love to keep in touch. I think this forum is great to talk things out so other women in the same situation can find us!

From the research I've done, <OOPS doctor's name mentioned> the doctor I consulted is The Man on endometrial classification. As a gyn onc I consulted with at the NIH said "you'd be hard pressed to find someone who would put another name on what he called something, since he's the one who wrote the textbook". He downgraded my readings too, by the way (2 different biopsies).

I'm really REALLY glad to be finding others going through this. I have really felt terribly alone both in sorting through it and then in going down the path.

I made the same decisions for Megace. The reasons I didn't accept it were 1) my age : waiting another 9 months minimum to try to get pregnant wasn't reasonable, 2) the failure rates w Megace are about 50% and there is a scary 5% of women who have cancer progress on treatment 3) Post-Megace pregnancy stats are not so great (granted, a large portion of the young women w CAH or Endo Ca are diagnosed because they have fertility problems, but still - wasn't reassuring to me at all). In my case I felt like I'd be taking a big risk for very little chance of a take-home baby which is what I want. I've done the infertility stuff long enough to know the big difference between getting pregnant and having a real baby, and decided I thought my old eggs would have a better chance in someone else than in me -- and those eggs need to come out asap.

It was the anesthesiologist who wanted to wait until after I got my period after the stimulation for the surgery so there wouldn't be extra blood flow. I pushed the date back by one week so that my husband can take some vacation with his son instead of attending to me in the hospital during a school holiday here. I don't think one week will make a difference.

I've heard the same about how few of us there are from all 3 gyn oncs that I consulted with. Apparently with ART on the rise there are more of us, but the "scientific" studies get published with about 30 patients max. It's hard to get good advice because there isn't a huge amount of experience out there.

Myic, funny that you went to low carb for Megace -- I started a low carb diet (for weight) several months before my diagnosis and I have never felt better. I suspect I'll eat this way for the rest of my life. I've lost some weight, but the biggest difference is the absence of hunger and just feeling good.

Finally, I agree w both of you that we should not only keep in touch but also make sure other women in our situation can find us. Maybe we should think of a new thread name and post it so they can find us easily? I try to come on here at least every few days in case there is someone as terrified and panicked as I was when I first got the news. I didn't find anyone for a long time and it took me forever to find good solid information, so I'd like to pay it forward and help others.

I have been a bit under the weather the last couple of days; even staying home today to rest. I definitely want tomorrow's egg retrieval to go smoothly! I am not even that nervous about it because I have been reading that egg retrieval is similar to a biopsy, and well... I have had my share of those! They aren't too bad (ok, they aren't great either), but I always get an adrenaline rush towards the end and feel nauseous if I get up too quickly after it's over.

My newest worry actually happened after I read about the "cancer ivf" where they gave Profpa a lower dosage of estrogen. I am worried that they didn't do that for me (since heck.. I was scheduled for a TAH the next month) and that the higher levels of estrogen will effect my biopsy/d&c when they do it next month. booo. Ahh well, I guess we all gotta have something to worry about

I went to the Johns website and looked at the team that did my consult. Interesting that he downgraded your diagnosis' as well. I wonder if pathologist are conservative in general. It takes a lot of moxy to downgrade a cancer diagnosis, I am sure. However, it can be devastating if you don't. I haven't read about it yet, but people (when they heard about my re-diagnosis), told me about breast cancer patients, that once examined after masectomies, didn't actually have cancer. It caused a kerfuffle I am sure.

ok! Getting ready for tomorrow. Thanks for the well wishes, round. You're too sweet xo

M-

Pathologists aren't quick to downgrade diagnoses at all (actually my mom is a pathologist specialized in pediatrics - retired now).

I had one gyn onc who deals almost never with fertile women who was concerned of the potenital of the IVF stims to push cancer, but 2 gyn oncs who do have experience w younger women who said ONE cycle would be okay. The estrogen is really only elevated for about 10 days. It's true that there is a *slight* risk that it might push something dormant or slow to grow enough to be seen as cancer at the time of Hyst, but in my opinion that same set of cells would progress to cancer given time, and as much as I'd love to have an 'all clear' reading of my hysterectomy it's more important for me to have an ACCURATE one and for me if I had cells present that can turn to cancer that fast, they should be considered cancer anyway & I'd want the treatment to go with it. I would think the same logic carries for you - if all it takes is those 10 days of high estrogen to push to an abnormal biopsy, you're not ready to stop the Megace yet.

You sound so zen & sane - hope I'm half as calm as you are when my turn rolls around (late next week?)

You're completely right and I appreciate that perspective. I just know that because of this downgrade they are going to be several pairs of eyes on my makeup, including this next set of MRI/D&C (or biopsy) so I wanted it to be an accurate view as opposed to an already estrogen dominant body with extra estrogen pumped in. But, with that in mind, it might bring out the lurking cancer cells.

haha that you called me "zen", my RE told me that I either must have an extremely passive personality or am a saint because of the high progestins I was on (especially provera). I suppose that a majority of women have a really rough time emotionally and physically (well, that they are quick to become agitated or even hostile).

I have decided to wear my old pajama bottoms today. To heck with convention! I might even wear my fuzzy slippers :O

Have a great day and I'll spill the beans when I get home later! Let me know if you don't want to know the details (in case that makes you more nervous). I went and watched one on You Tube because I had to know what I was in for). My spouse thinks I am crazy, haha.

I definitely want to know the details if you're up for sharing them.

I did an IVF in July 08 (ectopic, very sad) so I kind of know what to expect from this process, even though I'm doing this one someplace else.

I love the thought of fuzzy slippers in the stirrups! ;-)