Serous endometrial cancer (UPSC) - please give me hope

Molinari

cheerful said:

Dear Anna:

  I want to give your Mom a lot of hope - she has an excellent chance of surviving this cancer.  I was diagnosed with (UPSC) Stage 1 in February of 2011 (9 1/2 years ago) and I am still here.   I did go through 6 rounds of chemotherapy and 3 rounds of radiation (brachytherapy).  The chemo is doable and the radiation is easier to go through.  I was 59 1/2 when I was diagnosed and now I am 69.  This disease does strike woman around the average age of 68 so I was on the younger side to get this disease.  The reason I survived as I had a 90% chance or survival plus my histology was good and my age was on the younger side.  I had a hysterectomy but did not have my lymph nodes removed or my omentum because my gynocologist did my surgery and afterwards he recommended I see an oncologist who he knew from the hospital where I had my surgery. My oncologist mentioned to me to treat this cancer aggressively and I took his advice and went through chemo.  I did read on the Internet that if one with Stage 1 did not go through chemo, you had a 43% chance of it reoccurring and I did not want to leave this to chance. Plus UPSC is a very sneaky cancer and it can return on the pelvic area.  After  your Mom is done with her treatments, her oncologist will probably want to see your Mom probably every 3 to 6 months and she will have to go for reoccurring cat and pelvic scans.  I have several of the cat scans of the abdomen and pelvis done through the years and I also had a couple of Pet scans done as well.  Since that time in the last couple of years, my oncologist has since semi-retired and now I see another oncologist that took over for him. He is a wondeful doctor as well as my former oncologist is as well, and they are both very knowledgeable and they each have over 30 years of experience between them.    Your Mother will most likely have to go through an oncologist visit for the rest of her life - at least once a year down the road.  I wish your Mom all the best as she goes through this cancer journey and the women on the Board here are very knowledgeable and so very helpful and great women as well if you have any questions.  I am on the Board occasionally as I am not going through treatment anymore but do check in from time to time to see how the women are doing.

Cheerful

a/k/a Jane

Dear Jane,

thank you so much for sharing your story and it gives me hope! My mother is planned to have 4 cycles of chemo, but she'll ask the oncologist next week about having 6 cycles that seems to the be the standard treatment in US. Finding this board was a true blessing! 

Armywife

Molinari said:

Dear Armywife,

Thank you! And congratulations for being with NED. That's wonderful! I'll read more research about Metformin. I just talked to my mother about this medication and she got worried of getting episodes of low blood sugar and the symtoms following it. Do you expereince this?

Sorry!

I just saw your question.  No, my glucose levels have not changed at all and I have no symptoms at all from the metformin.  Doctor mentioned I might get diarrhea but I didn't even get that.  

Molinari

Armywife said:

Sorry!

I just saw your question.  No, my glucose levels have not changed at all and I have no symptoms at all from the metformin.  Doctor mentioned I might get diarrhea but I didn't even get that.  

Thank you!

No problems! That was wonderful news. 

Molly110

Me, too

Molinari, how great that you are helping your mom out.  I'm glad you found this site. Like your mom, I had USPC. (I use the past tense on the advice of my acupuncturist, although I know it could be lurking somewhere in me. I was stage 1 and was treated with what is standard in the US -- six rounds of taxol and carboplatin (basically the same drugs as your mom) and brachytherapy, which is internal vaginal radiation. The center where I was treated always does 5, although I think 3-4 is more common. 

One thing I learned from this discussion board is that there is every reason for you and your mom to hope.  *Many* women who post or used to poast here had/have Stage II ot III USPC and are thriving many years after treatment, while some women who were, like me, stage I, have died. I made the decision very early on not to research this cancer. Instead, I am relying on my gynecologist/oncologist, who is brilliant and highly experienced with this cancer, and doing what he advises me to do. After diagnosis, the first thing I read was a study that opened with a statement that this was a "rare, malignant" cancer with a very poor progosis. I knew if I kept reading I would decide against treatment.  One of the things I told my care team early on is that I did not want to know the survival statistics. I still don't want to know. 

I found the chemo and radiation very easy to deal with, which was a surprise, and I hope your mom does also. You may want to explore icing her hands and feet if her doctor has not already recommended it. It seems pretty effective in preventing chemotherapy-induced periperhal neuropathy. I started late, so I have a fair amount of neuropath. Many women don't get neuropathy at all, so don't get discouraged by my experience of it.

I was diagnosed a year ago this month and completed treatment 7 months ago, so I am still pretty new to it all. I have found the information from women on this board to be so useful throughout my treatment abd beyond.

Warm best wishes to you and your mom.

EZLiving66

Molinari said:

Thank you Eldri,

do you have problems with episodes and symtoms of low blood sugar? 

Never and I also take

Never and I also take glimepiride which lowers blood sugar.

Love,

Eldri

yetti

Metformin

Hello EZ. LIving. I am a stage 4 survivor of endometrial cancer. I am on letrozole. And Im NED. For 1 yr and 4 mths. Since April. 2019. I was also prescribed. Metformn. I take in the evening after dinner. 500 mg daily.  I was hoping you could tell me how this med helps with cancer. Thanks. Yetti 

Connie0127

New to uterine cancer

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

TeddyandBears_Mom

Connie0127 said:

New to uterine cancer

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

Connie0127, I'm so sorry that

Connie0127, I'm so sorry that you are having to go through this. Glad you found our board. You will find loads of support and answers to many of your questions.

I hope you are healing well from your surgery. There are many women on this board that have had the same treatment regimine that you will be going through. Please reach out with any questions and someone that has been there will answer.  I can tell you that the chemo that you will be getting is not easy but it is doable. It goes by fairly quickly. Be kind to yourself and listen to your body. Rest, drink tons of water and try to get a bit of walking in every day.  You can do this! You are stronger than you think.

Love and Hugs,

Cindi

 

NoTimeForCancer

Connie, I can't imagine how

Connie, I can't imagine how tough it is for you right now.  Your post has caused me to stop and pause.  My prayers are with you.

Armywife

Connie0127 said:

New to uterine cancer

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

Welcome, Connie

Praying for you now.  You've bravely faced your cancer for 6 years, and you've gotten through 100% of those tough days - you will get through this too!  We are here to help you and cheer you on.  Be kind to yourself - you are newly out of surgery.  Let yourself heal and rest to prepare for the journey ahead.  Almost all of us have been through surgery, chemo and/or radiation, and we have all found it do-able.  You're not alone. God bless.

Forherself

Connie0127 said:

New to uterine cancer

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

Prayers for you

Dear Connie welcome and prayers for you.  What a lot to deal with.  Endometrioid endometrial cancer is the less agressive one depending on grade, so that is hopeful.  I would ask your oncologist if the chemo will treat both types of cancer.  I think some of them do.  You want to know the grade of your cancer as well as the stage.  It must be so much to take in all at once.  We offer a lot of support here.  I think we are much more active than the breast cancer discussion board.  The emotional challenges of this disease can be overwehlming.  I hope you have support from family and friends.  We have several members here who have breast cancer and endometrial cancer.  Maybe they will comment too.  Keep in touch.

Molly110

Connie0127 said:

New to uterine cancer

Hi

Just checking in as a newby.

I was diagnosed with endometrioid endometrial adenocarcinoma, the end of July and had my hysterectomy August 6 2020. Now my treatment is going to be 30 rounds radiation and I believe 6 rounds of chemo. I also have metastasized breast cancer on my liver. I have read that the chemo they will be using is good for breast cancer treatment, which I hope is true since I will be put out of a study for the breast cancer medication due to chemo. 

I am still questioning life. I have had the breast cancer tumor for 6 years and last month a CT showed that it had grown and showed "puffiness" in my chest area.It seems all is caving in on me now. Asking for prayers and strength to get through this new cancer. 

Warm wishes, Connie. I'm so

Warm wishes, Connie. I'm so sorry for this new challenge. If it helps to know this, when I was diagnosed -- just about a year ago -- I was terrified of chemo. My wonderful gynecologist/oncologist told me that if my idea of chemo came from friends and family members who I'd seen go through breast cancer chemo he wanted me to know that uterine cancer chemo was generally considered much easier to get through. He was right for me, and I hope you have the same relatively easy experience that I had. It was a real comfort to me, as well as a great source of information, that the women who post on this board have worlds of experience to share. 

 

You now have all of us pulling for you.

 

Molly

 

Connie0127

Forherself said:

Prayers for you

Dear Connie welcome and prayers for you.  What a lot to deal with.  Endometrioid endometrial cancer is the less agressive one depending on grade, so that is hopeful.  I would ask your oncologist if the chemo will treat both types of cancer.  I think some of them do.  You want to know the grade of your cancer as well as the stage.  It must be so much to take in all at once.  We offer a lot of support here.  I think we are much more active than the breast cancer discussion board.  The emotional challenges of this disease can be overwehlming.  I hope you have support from family and friends.  We have several members here who have breast cancer and endometrial cancer.  Maybe they will comment too.  Keep in touch.

Forherself,

Forherself,

The chemo I will be getting are Carboplatin, Taxol, and starting with Cisplatin. Yes, they all help with breast cancer, which is good song breast cancer will not be taking a break from treatment. My endometrial cancer was stage lllc, grade 2. It had spread to my right pelvic lymph node, which was taken out. 

I do have support from my family and friends. I have a very supportive husband who I worry about his self care at times. We set appointments around his schedule so he can be with me. We talk about my fears, but I worry about his fears. 

Thanks people for the welcoming posts.

zsazsa1

Proton beam radiation

Molinari, the standard treatment is carboplatin plus taxol, and possibly herceptin, if her tumor shows high levels of her2neu receptors.  You should ask for the tumor to be tested for this.  After that would be pelvic radiation of some sort.  If she has a para-aortic node that looks like a metastasis, you might want to investigate whether she'd be a candidate for proton beam radiation.  This is highly focused radiation, fairly new, and it's available in Sweden.

Connie0127

Metformin

Why is it that metformin helps with the chemo? I am on metformin because I was diabetic, but now am on the line of being diabetic.

I also was wondering, how long will it take to loose my hair when I start chemo?

Armywife

Connie0127 said:

Metformin

Why is it that metformin helps with the chemo? I am on metformin because I was diabetic, but now am on the line of being diabetic.

I also was wondering, how long will it take to loose my hair when I start chemo?

Metformin

Connie, I'm not sure metformin helps with chemo, but it seems to help prevent cancer recurrence.  If you google it, the studies will come up to show you the hows and whys.

Also, you will probably start to lose your hair about 3 weeks after you start chemo.  I know it sounds awful, but it is so temporary and it really will be ok.  Go and choose a wig you like so you'll have it ready to go.  The cancer society has resources, and your health insurance may cover the cost of a wig.  I'd also suggest some soft cotton knit (like t-shirt material) caps - I called them my beanies - for sleeping and wearing around the house.  So cozy and comfy and keep your ears warm while you're sleeping! I found one silver lining in the cloud of hair loss - the absolutely wonderful feel of a warm shower on your head.  It was a pure blessing during a time of trial.  Enjoy it, and enjoy being able to get ready and out the door much faster when you just have to toss that wig on your head and go!

 

Molly110

Connie0127 said:

Metformin

Why is it that metformin helps with the chemo? I am on metformin because I was diabetic, but now am on the line of being diabetic.

I also was wondering, how long will it take to loose my hair when I start chemo?

Connie, if you will be on

Connie, if you will be on taxol, your hair will likely start falling out around 2-4 weeks after your first chemo. I lost a few strands at about 10 days and then had my hair cut and my head shaved to very short at 2 weeks to spare myself what would have been, for me, the trauma of having my hair come out in clumps. My hair was well below my shoulders, so I had it cut in such a way that I could have a wig cap made out of my own hair to wear under hats. I decided against that, but I'm glad I had it cut in such a way that I had the option.

My treatment center makes "cold cap" treatment available for free for any of their patients who want to try to keep their hair. I decided against it for several reasons, but you might want to look into whether that is an option at your medical center. 

If you plan on wearing a wig, people usually advise getting one before you lose your hair so that you have a smooth transition. I get my wigs online from a company called Patti's Pearls. The women who answer their customer service line -- including Patti -- are so helpful and kind. If you want to stay close to the color and style you have now, you can email them a picture and they can help you do that. Every few weeks they have a sitewide 30 percent off sale. One thing I didn't know but have since learned from experience is that one wig will likely not last from the time you lose your hair until you get it back if you wear a wig every day all day lomg and, especially, if the style is long. The wig I wear matches the style I had when I lost my hair, so it's pretty long. I've found that it wears where it meets my blazer collars, and I replace it about every 2 months. My insurance company doesn't cover wigs, but some do, and your doctor or nurse practitioner can write you a prescription for a cranial prosthesis just in case. Your care team will know all about what to do. 

I understand that not everyone loses her hair from chemotherapy that includes taxol, but I believe most of the women who post here did. I think it's better to be prepared for the likelihood to make it less traumatic if and when it does happen.

I don't know the answer about metformin, but I'm sure others here will. We have a physician, at least one nurse, and many very well informed women who keep up with and understand the research.

Warm best wishes.

Molly110

Armywife said:

Metformin

Connie, I'm not sure metformin helps with chemo, but it seems to help prevent cancer recurrence.  If you google it, the studies will come up to show you the hows and whys.

Also, you will probably start to lose your hair about 3 weeks after you start chemo.  I know it sounds awful, but it is so temporary and it really will be ok.  Go and choose a wig you like so you'll have it ready to go.  The cancer society has resources, and your health insurance may cover the cost of a wig.  I'd also suggest some soft cotton knit (like t-shirt material) caps - I called them my beanies - for sleeping and wearing around the house.  So cozy and comfy and keep your ears warm while you're sleeping! I found one silver lining in the cloud of hair loss - the absolutely wonderful feel of a warm shower on your head.  It was a pure blessing during a time of trial.  Enjoy it, and enjoy being able to get ready and out the door much faster when you just have to toss that wig on your head and go!

 

Army Wife

Army Wife, I was writing my response when you posted yours, so I didn't see it until after I posted mine.  I'm so glad you mentioned soft caps; they really helped me at night. A friend knitted me mine, and they were much softer than the ones available commercially -- at least the ones I tried. 

It's funny how different we all are. I hated the feeling of water on my hairless head. I was used to gathering all my hair up on the top of my head to shampoo it, and to have nothing there made me sad every time. Fortunately, I mostly took baths, so I didn't have to deal with it much except when I washed my scalp. Seven months after my last chemo, and I still hate washing my hair and feeling how short it is. 

I'm sort of a one-woman campaign when it comes to talking about hair loss. Most of the really good sites for chemo patients, like the Mayo Clinic, talk about the stress or trauma of losing one's hair, but the prevailing attitude among many otherwise sympathetic people seems to be "it's only hair." It's gotten to where anytime someone tells me that, or tells me to "rock" the look, I fantasize about someone shaving that person's head so that they can rock the look and see how they like it. Until then, I never knew I had a mean streak. I wish there were a site or forum devoted to chemo hair loss. There are lots of individual blogs by women who've experienced it -- usually after breast cancer chemo -- but a lot of the information on those sites is not accurate. One of the things I like about this discussion board is the high quality of the information women who post here share.

Molly110

Armywife said:

Metformin

Connie, I'm not sure metformin helps with chemo, but it seems to help prevent cancer recurrence.  If you google it, the studies will come up to show you the hows and whys.

Also, you will probably start to lose your hair about 3 weeks after you start chemo.  I know it sounds awful, but it is so temporary and it really will be ok.  Go and choose a wig you like so you'll have it ready to go.  The cancer society has resources, and your health insurance may cover the cost of a wig.  I'd also suggest some soft cotton knit (like t-shirt material) caps - I called them my beanies - for sleeping and wearing around the house.  So cozy and comfy and keep your ears warm while you're sleeping! I found one silver lining in the cloud of hair loss - the absolutely wonderful feel of a warm shower on your head.  It was a pure blessing during a time of trial.  Enjoy it, and enjoy being able to get ready and out the door much faster when you just have to toss that wig on your head and go!

 

Army Wife

Army Wife, I was writing my response when you posted yours, so I didn't see it until after I posted mine.  I'm so glad you mentioned soft caps; they really helped me at night. A friend knitted me mine, and they were much softer than the ones available commercially -- at least the ones I tried. 

It's funny how different we all are. I hated the feeling of water on my hairless head. I was used to gathering all my hair up on the top of my head to shampoo it, and to have nothing there made me sad every time. Fortunately, I mostly took baths, so I didn't have to deal with it much except when I washed my scalp. Seven months after my last chemo, and I still hate washing my hair and feeling how short it is. 

I'm sort of a one-woman campaign when it comes to talking about hair loss. Most of the really good sites for chemo patients, like the Mayo Clinic, talk about the stress or trauma of losing one's hair, but the prevailing attitude among many otherwise sympathetic people seems to be "it's only hair." It's gotten to where anytime someone tells me that, or tells me to "rock" the look, I fantasize about someone shaving that person's head so that they can rock the look and see how they like it. Until then, I never knew I had a mean streak. I wish there were a site or forum devoted to chemo hair loss. There are lots of individual blogs by women who've experienced it -- usually after breast cancer chemo -- but a lot of the information on those sites is not accurate. One of the things I like about this discussion board is the high quality of the information women who post here share.

EZLiving66

yetti said:

Metformin

Hello EZ. LIving. I am a stage 4 survivor of endometrial cancer. I am on letrozole. And Im NED. For 1 yr and 4 mths. Since April. 2019. I was also prescribed. Metformn. I take in the evening after dinner. 500 mg daily.  I was hoping you could tell me how this med helps with cancer. Thanks. Yetti 

I'm sorry I just saw this.

I'm sorry I just saw this. Takingcontrol58 is the one to "talk to." During chemo my blood glucose was going over 600 and even though it came down my GP was willing to prescribe it for me. There are some clinical trials using it to keep the UPSC from spreading. I will be NED (No Evidence of Disease) for five years this September 30th. Is it because of the Metformin? I don't know but I'm not going off of it.

Love,

Eldri