Low grade endometrial cancer, lynch syndrome, and HRT

@angierivas1 This is a conundrum. If I were you I’d get another opinion or two. What do you know about the endometrial cancer that you were diagnosed with? Was it ER Postive meaning estrogen receptor positive? I don’t know how that might relate to Lynch syndrome but I would want to know more before taking HRT. Also, what symptoms associated with surgical menopause are you experiencing? I’d suggest that you write those down when you have a medical visit so that the provider can discuss options with you for relief of the symptoms.

I’m going to tag @val64 as she has been treated for gynecological cancer and may have information to share regarding your question.

I don’t know of any of our members who have posted here and have Lynch syndrome, diagnosis of endometrial cancer and use HRT. However, let’s wait and see if someone responds.

Hi Angie,
Sending you encouragement!

My genetic testing showed Lynch syndrome, but none of my cancer screenings have shown any signs yet and I've already completed menopause, so I can't address your situation directly. Sorry about that.

You may want to check out the specific type of Lynch. I can't remember the different names, except the one that's in my family. We have the PMS2 variant. The PMS2 variant seems to have a lower association with some cancers than the other variants. Knowing your kind of Lynch might help?

Good luck to you!

Thank you Helen for your response and suggestions.
My GYN appointment is at the end of this month.
It’s been difficult since my hysterectomy. I’m dealing with night sweats, vaginal burning during intimacy, even after using different kinds of lubricants.
My husband has been supportive and patient.
My poor sleep is also affecting my daily life.
I am 46 years old. And I am trying to find solutions to some of the health issues I an dealing with.
Thanks again. Take care.

Hello Anne. I’m so glad you’re doing well. I pray you continue receiving great results on your yearly screenings.
Can you believe we: my mom, older sister, and I have the same variant as you?
We were diagnosed with PMS2 a few years ago. Out of the three, two of us have been diagnosed with endometrial cancer. Mom in her 60’s and I on my 40’s.
It has been a challenging road but we are fighters in our family. We have strong faith. It helps us so much to know we are not alone and to keep moving forward. I see the blessings in my life.
Take care!

Lynch syndrome in our family
my Mom two other sisters all had hysterectomies
It runs in family
Just had full hysterectomy one month ago
Doctor says no more cancer now
Prayers to you

Just had full hysterectomy age 75
My Mom two sisters me all had hystectomies
Removed ovaries fallopian tubes too
I had stage one ending cancer
So it had not gone beyond uterus
After month recovery feel better

@angierivas1 It’s good that your appointment in GYN is coming up so soon. The symptoms that you describe are what I had when I was peri-menopausal (I’m 71 years old). When I entered the post-menopause phase the night sweats and hot flashes went away. But the vaginal burning during and after intimacy remained. I had very little help from the providers I consulted with at home. In retrospect I’ve realized that they just did not know what to advise.When I was referred to the Women’s Menopause and Sexual Health Clinic at Mayo Clinic in Rochester, MN I met with providers who were experts with this. It was such a relief to be helped by providers who know that sexual intimacy is an important aspect of our well-being and they even met with me and my partner together.

If you cannot take HRT, can you ask the gynecologist if you are a candidate for vaginal estradiol? This is an estrogen product and I learned (at Mayo Clinic) not to insert into the vagina as the package instructions directed. Instead I put just a little on my finger and gently massaged it into the lower inner lips of the vulva and lower vagina. This is apparently where it does the most good. I’ve been advised that I can no longer use the estradiol because I had a recurrence of ER+ endometrial cancer so the oncologist advised against it. Still - and this is important - vaginal estradiol is applied topically. Very, very little is absorbed into the bloodstream. If your gynecologist thinks this might be a possibility maybe you can ask about taking progesterone - even as a transdermal cream. It’s just an idea I’ve had but I would not do that without the OK of my doctor.

I have other moisturizers I use that do not have any estrogen on the advice of my doctor. These do work well and are an option.

As for sleep? Yes, restful sleep was and is an issue for me peri- and post-menopause. Maybe your doctor will have some ideas of what you could do if you cannot take HRT. There are cognitive-behavioral approaches to sleep hygiene that are helpful too.

I hope all of this rambling is helpful to you. Will you let me know if you have other questions or other ways I might be supportive to you?

Thank you so much Helen for sharing yourself. You’re so helpful! I will keep in mind that cream you mentioned and will ask the Gyn next week.
I’m so sorry you had a recurrence ;( How are you doing these days?
I realized that going through menopause is not easy and on top of that recovering from major surgery plus dealing with a cancer diagnosis.
There are days that my upper stomach hurts and can’t eat much. My mind goes there right away. Is it be cancer? It’s a scary situation. I’m trying to stay positive.
Lately, I have been feeling fatigue so no exercise. This is month 4 post- surgery.
As I said before my husband is supportive and I appreciate that. My child is my inspiration to keep going…One day at a time. Take care.

@angierivas1 I went through menopause the “natural” way and that wasn’t easy. I know of others younger than me (they were in their 40’s )who have entered menopause after a hysterectomy due to endometrial cancer and like you all the symptoms hit them at once. You would think that the medical profession would figured out how best to manage surgical menopause but in my friends’ cases it took visits to more than one provider to get treatments and relief. That is why I mentioned the Mayo Clinic Women’s Menopause and Sexual Health Clinic. Meeting with the providers (nurses, nurse practitioners and psychologist) was the first time I felt I was listened to and my needs were taken into account.

The recurrence I experienced in 2021 is in my “rear view mirror” and I keep up with the recommended cancer surveillance follow-up appointments. No evidence of disease in any of my follow-up appointments and I feel really good. Thank you for asking. Like you, when something new shows up my first thought is “is it cancer?”. I’ve learned that this happens to many of us and also like you I bring my mind back to the present.

It’s possible that the fatigue you are experiencing could be menopause-related. This is something you can talk with your gynecologist about. I know that my energy level took a slow dive during the peri-menopausal years.

It’s wonderful that your husband is supportive. Emotional support is so key to living a good life. Your child (how old?) will need and want you to be present in their life so yes, that is such an inspiration. I’d say that your family provides you with so much to keep you centered on in each and every day.

Tomorrow is the first day of summer. Do you have plans with your family during these summer months?

Could you tell us what moisturizer has been helpful to you. I have VA and could use advice on moisturizes.