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Anyone prescribed progesterone after hysterectomy to reduce risk of reoccurance ?

Denise66
Posts: 56
Joined: Aug 2018

Had Hysterectomy in August.  post op appointment I learned I was stage 1B.   Doc gave me the opinion of brachy.  I was not comfortable with that and doc recommended progesterone for 6 months.  

 

Has anyone been prescribed progesterone after hysterectomy?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2583
Joined: Mar 2013

Denise, some uterine cancers can be treated with hormones.  Others, aggressive forms like UPSC, would be fed and thrive with hormones.  

MAbound
Posts: 859
Joined: Jun 2016

I started on Progesterone therapy about 6 weeks after I finished chemo and radiation therapy. I've been on it for about a year and a half now and so far so good.

Maybe I missed it in one of your earlier posts, but I don't know what type or grade of cancer you have. I have endometrial adenocarcinoma, stage 3a, grade three. That's the hormone driven form of endometrial cancer that progesterone can hold off recurrence for by blocking Progesterone receptors. My Estrogen and Progesterone receptors were tested as part of my pathology analysis and I was 90% positive for both, although the Progesterone Receptors were only weak to moderately active. I started on Metformin during chemo and studies have shown that it's a drug that can reactivate and strengthen progesteron receptors in endometrial cancer patients, so perhaps this is playing a role in how well this is working for me.

I'm not sure that progesterone helps for the other rarer and more aggressive forms of endometrial cancer. I kind of think it won't.

How long to be on it? When my gyn onc started me on it he was saying for the rest of my life. I'm thinking at the time he was more concerned about how long that was going to be than he is now. He seemed a lot more positive about my prospects this past July and was talking about maybe staying on it till I hit my 5 year anniversary instead. It's hard to know if I'm NED because of surgery, chemo, and radiation or if the progesterone is buying me more time NED. My high grade puts me at high risk for recurrence. I will be very nervous about stopping it.

I'm not really having any problems taking the progesterone other than my brain going "what else can I have" when I eat. Weight gain is a common side effect so one has to have some willpower and vigiliance while taking it. It also puts you at higher risk for blood clots, so you'd want to talk to your doctor about that. 

 

oldbeauty
Posts: 191
Joined: May 2012

MaBound, I'm glad you seem to be having good results with progesterone.  I don't know what your dose is but I took 400 mg daily of Provera (medroxyprogesterone acetate) for 5 years before I had a recurrence.  I am posting just to give you a heads up that the dosage at that level put my adrenal gland into "Sleeping Beauty" mode and it won't revive, even after stopping the drug when I entered chemotherapy.  A sleeping adrenal is not a death sentence, but if it happens, you have to take hydrocortisone for the rest of your life to guard against an adrenal crisis that could put you into shock and a life-threatening condition.  It might be worth discussing with your doc, if you have not already.  It's a known side-effect on long-term use.  If you stop the medication for any reason, they should do a coritsol blood test on you to test your adrenal function.  Also, I'll add that I don't know why Megace and not Provera is the progesterone drug they use here in the US.  My endocrinologist told me not to switch to Megace when I returned to the US after living overseas, bc of Megace's correllation with weight gain.  Provera never affected my appetite and I did not gain weight bc of it.  But they don't distribute Provera here in doses higher than 10mg tablets.  Best wishes, Oldbeauty

CheeseQueen57's picture
CheeseQueen57
Posts: 803
Joined: Feb 2016

I wish my doc would have put me on Megace right after treatment. Perhaps I would have not had the reoccurrence 8 months later. Hindsite. 

Denise66
Posts: 56
Joined: Aug 2018

I have stage 1B and Figo 2.  Would the pathology report show if doc tested for hormone receptors?  

 

As far as the progesterone I'm on, it's I believe the bioidentical progesterone; prometrium.  It says on the RX bottle ."common brand Prometrium".  

 

Are you on the bioidentical or synthetic progesterone?  

barnyardgal
Posts: 212
Joined: Oct 2017

I was on provera prior to surgery. I had 3a, grade 2 and my cancer was very estrogen driven. The doctor put me on Letrozole to help prevent a recurrence. This drug suppresses estrogen. Side effects are joint pain and bone loss but I'm on some supplements to try to prevent those. My dexoscan showed my bones were good so hopefully no bone loss. 

Denise66
Posts: 56
Joined: Aug 2018

Just read the office note as to why doc put me on progesterone. My pelvic was negative for cancer cells.  However, positive for endometrious cells which I never knew I had.  This is the first time I have heard this.  Does this being positive for Endo with the pelvic wash increase chance of reoccurance ?   Also, my doc gave me stats for survival that are not consistent with the American Cancer Society.  Anyone get stats from their docs that differ from the ACS?  

 

You girls are great!

MAbound
Posts: 859
Joined: Jun 2016

I'm taking megestrol acetate (MA), a synthetic form of progesterone, 80mg twice a day. My understanding is that while adrenal insufficiency is a possible side effect of taking this, that's it's more likely to be induced by suddenly stopping it and that it is reversible, but that it would take a few weeks for that to happen. This from an nih publication:

"Three additional patients are presented who developed symptomatic adrenal insufficiency while they were receiving 160-320 mg MA daily. The patients were treated with cortisone acetate supplements, had clear evidence of HPA-axis suppression but recovered fully after MA was discontinued. " 

You'd think progesterone is progesterone, but maybe the type and dosage one takes makes a difference in this regard.

A positive pelvic wash would put you at higher risk for metastasis, which is why I'm kind of surprised chemo wasn't discussed with you as an option although your use of endometrious cells is kind of confusing and maybe those aren't considered cancerous, but are just normal endometrial cells in your abdomen. You may want a second opinion about the results of your wash. If your ER and PR receptors were tested, the result should have been a part of you pathology report. Do you have your own copy from the hospital or wherever your tissue was evaluated?

I would really not focus on stats. They are not that useful. We like to say that each of us is a statistic of one here, because stats are such poor predictors of anything. Just focus on understanding your pathology report and on getting the best treatment options for your situation. That can involve getting more than one opinion on what those are. If I've learned anything since my journey started it's that different doctors have different philosophies and approaches to treatment and its up to you to decide which of them to trust. It's ridiculous since you're not the expert, but that's the way it is.

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