Endometrial Cancer Stage 1 Grade 1 treated w/Progestins & Mirena, my 5 year Survival
As I mark this time as my 5 year survival..
Every now & then, someone will still ask me how I am and ask some questions regarding my treatment using progestins vs surgery. I'm happy to say that I'm still alive and seem fine. : )
For those of you who are just beginning to consider using progestin treatment vs surgery and haven't done a lot of reading, I'd like you to read my website before reading this info. My profile has a link to my website for a better overview.
There's been a few recurrent notions that I'd like to comment upon and some experiences I'd like to share:
1. To remind people, there ARE risks in doing things this way, and proper testing should ALWAYS be done before using conservative (nonsurgical) methods. In my opinion, a biopsy or two alone is NOT enough testing to be taking this treatment. I think that by all means a D&C and an MRI should be done first. Some doctors may be letting some women get away with less, and I can't condone this. As you should know, only an assumed diagnosis can be made before surgery.
2. I am biased towards Megace, also known generically as megestrol acetate, vs other types of progestins and more natural types of progesterones. Although unnatural may sound "icky", there is a reason for it. The alteration allows the body to more surely absorb the hormone vs. the natural forms being destroyed by the body's digestive and other systems. I just don't hear as many success stories from women who use the other forms, but I am happy for those who do achieve success with them. Which brings me to my next point..
3. If progestin/progesterone treatment isn't working, do something else - PROMPTLY!
I had a d&c at 3 months and 7months. Though the medical staff downplayed the news, I showed some progress at 3 months. In my own opinion, at least some results should be showing in 3 months maybe up to 6 months. I believe I started at 160 mg and after 3 months I went to 320 mg. (I know that I have this info on my website) Again, I'm biased towards Megace, especially if some results aren't showing in 3 months. In my opinion (and I stress that it's just my opinion) if some results aren't showing by 6 months, be it for endometrial cancer stage 1 or hyperplasia w/atypia, something needs to be done.. likely surgery. I believe that some doctors are letting patients go way beyond this timetable. I can't condone that.
4. After the cancer appears to be resolved, I highly recommend using a Mirena IUD (for those unfamiliar, this isn't the olden style of dangerous metal IUD w/2 filaments, this is plastic, contains progestins and has a monofilament) to avoid recurrence unless you are going to try to become pregnant quickly. Recurrences have happened, I'm afraid all too frequently. I myself, don't know if I've had any recurrences, which leads to my next point..
I may have had a recurrence at 3 1/2 years after treatment and not know it. I noticed that my period, minimized because of the Mirena, had gotten a little more fluid. Somewhere I read that the Mirena gives off less progestins as they get to the end of their 5 year use. At the point that my minimized period started to trail for about 9 days, I decided it was time to do something quick. Before I had received my initial diagnosis years prior, there was a warning sign in the fluidity and timespan of my periods, but I didn't know that I was getting a warning. You can be sure that I would never ignore that signal again. I asked my doctor to go back on Megace and for an MRI and she agreed. The MRI came out normal and I chose to take 40 mg megestrol acetate a day for a while which turned out to be 7 months. It always seemed like I would get what is known as a withdrawal bleed if I stopped taking the Megace, but to my surprise, that didn't really happen. Now I barely get an inkling of a period.
I believe that some doctors may be holding out on using the Mirena because they believe that they can't do a biopsy w/it in place. (my buddy's doctor gave her that reason) From what I read, there isn't much endometrium to do a biopsy of once it's thinnned out, however I hear that a sort of brush biopsy has been done (I think that it is called a Tao brush), however my doctor was not inclined to do this type of biopsy and I didn't push it. As far as I'm concerned, I'm good again.
I still mean to go for a TVS ultrasound every so often.
I never tried to get pregnant. Unfortunately, my boyfriend of several years has a drinking problems and I wasn't going to try for a child with not only my own health questionability, but his too. I'm still kooky enough to keep looking for a more suitable partner and maybe trying, but though unusually youthful for my years, I'm 45 and I don't have to tell you that's pretty old for it.
All in all though, I am still verrry glad that I have chosen the conservative form of treatment! I managed to hide my illness from my mom before she took ill and passed.. I dread to think what would have happened if I took surgery just before she became ill.
I still write to the original gynonc who treated me to let her know how I am, (as the long range use of this treatment, especially w/the use of the Mirena, isn't well-documented), and I still hope to be of help to those who want to know their options in treatment.