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Glad to find you, scared about cancer/megace Glad to find you, scared about cancer/megace

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Unread 02-24-2004, 09:04 PM
Glad to find you, scared about cancer/megace

Having a heck of a nonstop "period" since Oct. 2003, my closest friend handed me a phone, and a recommended gyn and said, "make the appointment already."

I called Friday 6, 2004, and Monday the 9th I was seen by a certified nurse practicioner (CNP) The CNP took history, and did exam and ordered bloodwork (fasting-for the next day), a scrip for Provera, and an ultrasound the following Monday.

I did as they asked, did the fasting labs on Tuesday and was alarmed on Wed. when a "real" Dr. called and told me that my hematocrit was a 6, and my hemoglobin a 22. They wanted me to come in that day for an endometrial biopsy and start taking iron like no weight lifting enthusiast had ever experienced! (I can't believe how much iron I am taking!)

I couldn't go on Wed, so I went Thurs. AM and had the biopsy, pap, and got a new scrip for Megace. The Dr. told of her concerns re: endometrial cancer due to my weight and other factors. She said we would have results hopefully by the following Wed, but by Thurs. at the latest.

Went to the pharmacy to fill Megace, the pharmacist looked at me (and my 33 years) and asked why I was taking megace. Quite offended that she didn't know why, I said "to stop bleeding" and she said, well, I don't want you to freak out when you read this sentence and she pointed to the one that read, "This medication is used to treat cancer." That was tough to handle!

Monday the 16th, had the ultrasound, although I was told that they would be calling in a day or two, I have not heard from the office.

I called the Dr. yesterday (the 23rd), the pathology was not back, and again today, the nurse said that we would have the report tomorrow and the Dr. would call.

What I could not ascertain from the nurse was about what the Megace is doing to my body. I feel gross (I have been on Megace since the 12th) and am wondering what the effects of the drug are...Is all the endo lining that I kept expelling in large clots just sitting up inside me just waiting for what? Is it evaporating? What is going on? Could someone tell me how this works?

I would do anything just to understand a bit more about where we are going with Megace. Dr. said something about hysterectomy if precancer/cancer, almost want it to happen so I can feel better!

Can anyone hold my hand? Thanks! (PS, this group is amazing!)
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Unread 02-25-2004, 06:16 AM
Glad to find you, scared about cancer/megace

From what I understand, Megace, like alot of other drugs, is used to treat a multitude of things. ONE of the things it's used for is to treat cancer. What it is a synthetic progesterone (which should help you stop bleeding). I'm sure there are ALOT of other women here that have more experience on this drug than I do.
I just did a search on the net for the drug and it brought up ALL KINDS of uses! I wish your pharmacist would have given you a THOROUGH description of the drug.

Hugs to you. It's so hard dealing with our "out of whack" female bodies sometimes.

I wish you the best!
Unread 02-25-2004, 06:33 AM
Glad to find you, scared about cancer/megace


Sorry that you are dealing with this--but I'm glad your friend got you going to a DR to get it checked out!

I've never been on Megace, but had a TAH BSO because the DR was quite certain that I had endo cancer, which I did. The path reports from my D&C were apparently pretty definite about it.

However, lots of HS members have used Megace. You can do a search on it within the website and find posts about it--that may help. You'll also know more once you've gotten the reports from the DR.

We're all here to hold your hand and offer all the support we can! I do wish that your pharmacist had been a little gentler!

With best wishes and prayers--

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Unread 02-25-2004, 09:44 AM
Glad to find you, scared about cancer/megace

I've been on Megace for the last three months, for complex endometrial hyperplasia with atypia, which is a potentially precancerous condition. Basically (as I understand it), most endometrial cancer is caused by "unopposed estrogen" -- when, for various reasons, the body produces a lot of estrogen, which builds up the endometrial lining, but doesn't produce enough progesterone, which is what thins the lining out again. A lengthy period of unopposed estrogen stimulation can lead to an overgrowth of the lining -- hyperplasia -- and ultimately, if not treated, to cancer.

However, hyperplasia comes in varying degrees of severity. Complex hyperplasia with atypia has about a 25 to 20 percent chance of developing into cancer if not treated; simple hyperplasia without atypia only about two percent. Megace, as was mentioned above, is a form of synthetic progesterone, and in many people it can reverse the hyperplasia (or even early stage endometrial cancer). So its use does not by any means indicate that you have cancer -- probably your ultrasound showed a thickening of the endometrial lining, which indicates some form of hyperplasia, so it makes sense to put you on megace while waiting for the biopsy results. (BTW, at my pharmacy, the information sheet they gave me with the Megace didn't just describe it as a cancer drug -- it described it as a drug for certain inoperable or terminal cancers!! Fortunately, I had been warned beforehand about what I was taking it for, but even so it's kind of freaky to read that).

As for the way you feel -- people have differing reactions to the stuff. Some people can't tolerate it at all. I had pretty bad side effects for the first few weeks -- constant nausea, headaches, cramping and, worst of all, horrible black depression. Although I knew that taking it was my only chance to avoid hysterectomy, I was about to give up because I just could not take the mood swings -- but after about three weeks the side effects began to moderate and now the only problem I have is that fish and nuts make me nauseous (!). So hang in there -- there's a good chance that any side effects you have will go away as your body becomes accustomed to the drug.

If you do have hyperplasia then, depending on its severity and other factors, you may be put on megace for three months, after which you will have another ultrasound/biopy or a D&C to see what effect it has had, if any. I am having a D&C tomorrow, for that purpose (and I'm not very happy about it because I hate anesthesia, which is probably why I'm rambling on at such length here instead of getting my work done. Sorry!).

Good luck, and don't worry.
Unread 02-25-2004, 06:34 PM
Glad to find you, scared about cancer/megace

Hi Allyoopadoop,

I took Megace right after I had my TAH/BSO because I had severe stage 4 endo. My gyn had me take Megace for about 3 months post op as an extra precaution so that any possible remaining endo would be suppressed by the synthetic progestin in the Megace.

The Megace should help stop your periods, if you are taking it continuously. There are other drugs that the docs sometimes prescribe for the same purpose (Aygestin is one, I took this prior to my hyst), but my understanding is that Megace is one of the "stronger" drugs for this kind of treatment.

I actually did very well while taking the Megace. Of course this was during my early recovery so I attributed a lot of things to surgical recovery, etc.

I have also read that Megace is sometimes used with patients who have poor appetites (like AIDS patients) and it does have the effect of making you feel hungry.

So - just because you are taking Megace does not mean it is a foregone conclusion that you have cancer. Keep us posted on how you are doing and what the test results show. Sending hugs your way.

Unread 02-25-2004, 06:49 PM
Glad to find you, scared about cancer/megace

Hi Ally,

I have been a member of this board for almost two years now, and the hand holding is unbelieveable. Sometimes the squeezes even hurt!!

I am sorry that you are going through all of this but glad that we can help. The waiting for an actual diagnosis is the worst but soon you will know and it will be taken care of.

Unread 02-26-2004, 08:53 PM

Hi Ally,

I have been on Megace for a little over a year. I had a radical hyst. for endometrial ca. last Feb. The worst side effect for me has been my increase in appetite. and occasional gas ( okay, more than occasional ) Luckily, I work outdoors and with a bunch of old smelly guys anyway LOL. I've gained close to 45 lbs since my surgery..........( I have to mention that I quit a 30 yr smoking habit at the same time) I do believe that the combination of not smoking, the Megace and a lack of consistant physical exsercise has contributed to my weight gain,

On the flip side, being thrust into surgical menopause, I do believe that the Megace has helped with some of the bothersome symptoms. I have had minimal hot flashes, mood swings, cloudy thinking, etc. The one thing that does still get me is the sweats at night.......not to bad , tho.

Just because you have been presribed Megace does not mean you have cancer. Please try and stay calm (ya ...right !!!! ) The waiting is the hardest, God knows. Be good to yourself and let us know how things go.

Feel free to e-mail /or Pm if I can be of help.

Unread 03-01-2004, 12:59 PM

Starting last September, three months after taking myself off of Cenestin (an estrogen for HRT), I began bleeding. I thought it was the result of getting off the estrogen.

After my annual gyn visit in November, the dr noticed endometrial cells on the pap smear and had me come in for a biopsy and ultrasound. She called the next week to tell me that the path report indicated "complex hyperplasia with atypical cells," and said that the recommendation was for a hysterectomy. She made an appt for me with an gyn/onc.

The gyn/onc put me on 40 mg Megace per day & asked me to return in 6 weeks for another biopsy and ultrasound. Good news - the biopsy showed NO atypical cells, so the Megace is doing it's job. I still have thickening of the endometrium, though.

My gyn is still recommending the hysterectomy - as soon as possible - but the gyn/onc isn't as worried. I go back in 3 weeks to talk to him. What a dilemma: my gyn, that I highly regard and trust, wants the uterus removed asap - while the specialist - the surgeon, does not see the need to rush. If the tables were turned, I'd understand - but a surgeon not rushing to surgery?? Well, I obviously respect him : -)

Luckly, I've had no adverse side effects on Megace, although my gyn/onc told me that most patients gain weight (it DOES increase the appetite for most people).

Oh, and since estrogen is "fed" by fat, I cut out all extra fats for the first 6 weeks. I'm wondering how much that helped. Lately, though, I've not followed a low-fat diet, but plan to get back on track soon. I was determined not to gain weight at that first 6 week follow-up, and in fact had lost 4 lbs!

Did anyone else notice the "new" report about fat linked to increase of breast cancer? If the health community already considers obesity a risk-factor for uterine/endometrial cancer, where are the warnings posted? Doctors tell us to lose weight, but they don't say "your fat cells will cause cancer."

Off the subject, but I just read Fran Drescher's (The Nanny) book, "Cancer Schmancer." It took two years and 10 doctors to finally diagnose her uterine cancer!

Good luck, all, with Megace.
Unread 03-01-2004, 09:52 PM
Glad to find you, scared about cancer/megace

Hi Ally,
Please try not to worry. I know that is easier said than done. I have had the same exact problem myself late last year, with the bleeding non stop. I went to the gyn. and he first took a scan and then took a biopsy and every thing was clear, with only a slight thickening of the uterine lining. He put me on Provera. This is the same or similar to the Megace. I was still having a lot of problems with bleeding non stop. So he did a D&C. The path. report showed complex hyperplasia with atypia.

My being 35, he was very suprised and shocked. He wanted me to go back on the Provera. I almost cried right there in the office. I just really could not take the horrible mood swings. I was crying one second and laughing the next. Talk about psycho! After several weeks of still bleeding and mood swinging, I called the doc back and said I could not take it any more. He asked me to try and hold on just a bit longer. I said NO WAY. So they switched me to something called Prometrium. This is a more natural form of progesterone. The provera and megace are synthetic form of progesterone.

This has been so much better for me. My period actually stopped for a while. I just have to be very careful that I take it at the same time every night or I get some break thru. The mood swings have stopped...mostly. But I do feel more emotionally stable. Thank goodness!!

I guess what I am trying to say is, try to keep calm. Do as much research as you can on the drug(s) and more on what ever diagnosis comes your way. The waiting is always so trecherous, but there is a lot of help here for you.

Most women under 40 with this diagnosis seem to go on the hormone therapy treatment for 3 months and then get a second D&C after that. I will have my second one at the end of March, early April and go from there. I just have to have hope that the hormones are doing their job of getting rid of all those atypical cells. My doc was comforting, in that there was no rush for surgery. I feel it is very important for me to "keep all my parts" as long as I can. If that means hormones and some weight gain, then so be it.

Please feel free to send me a PM and ask any questions you want or even just vent. It is so comforting to know we are not alone.

Sorry this is so long, hope some of this was helpful to you.

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