Serous endometrial cancer (UPSC) - please give me hope

Diane The Fighter said:

New to Serous endometrial cancer USPC DX Grade III

Hello everyone and thank you for this source of comfort! Of course I was terrfied when I 1st heard this news and I am going to my 1st consult with the Surgeon tomorrow. So as of now I have no idea of my stage but am told it is a grade III  USPC. Have any of you had the grade III? I am worried of course and am only 57 and have none of the usual reasons of getting this as I had not even started menopause yet. I had used a lot of Baby powder over the years as I had read can increase the odds of getting this by 24%. I just am scared and asking for hope....I dont have family or much support....so I am worried about the surgery how long of down time I have horses and animals I need to take care of.    I really need some hope as I said scared about the grade III anything I need to know would be appreciated, several friends say do not do chemo?? Anyway to survive without having it?
Thank you again!!
Love and healing hugs to you all!!
~Diane

Hello Diane,

The grade 3 is likely the grade of the tumor from what I can tell serous papillary is almost always grade 3 tumor, after your hysterectomy you will know the stage, which indicates whether the cancer has spread. Also, from what I have read, this type is usually caused by a gene mutation. They generally recommend chemo for all stages of serous papillary as it is very aggressive, but not unbeatable, as evidenced by others on this blog. Wish you well on this frightening journey, unfortuneately everyone on this blog is engaged in the same battle. I find this blog to be very informative and comforting.

Diane The Fighter said:

New to Serous endometrial cancer USPC DX Grade III

Hello everyone and thank you for this source of comfort! Of course I was terrfied when I 1st heard this news and I am going to my 1st consult with the Surgeon tomorrow. So as of now I have no idea of my stage but am told it is a grade III  USPC. Have any of you had the grade III? I am worried of course and am only 57 and have none of the usual reasons of getting this as I had not even started menopause yet. I had used a lot of Baby powder over the years as I had read can increase the odds of getting this by 24%. I just am scared and asking for hope....I dont have family or much support....so I am worried about the surgery how long of down time I have horses and animals I need to take care of.    I really need some hope as I said scared about the grade III anything I need to know would be appreciated, several friends say do not do chemo?? Anyway to survive without having it?
Thank you again!!
Love and healing hugs to you all!!
~Diane

Dear Diane, please don't beat yourself up over baby powder.  Sadly, this disease never has a lot of rhyme or reason to it it seems.  

As stated by Frances, once your surgery by a gynecologic oncologist is complete, they should be able to tell you what you are really dealing with and make a plan for you.  It is so overwhelming right now, but try to take a breath. 

My family lives in a different city, and some good friends helped me with grocery shopping and things, and hopefully the good friends will be able to help with the animals.  Once you have the surgery you will need their help, since you will be resticted from lifting things over 5 or 10 lbs - and you do want to stick with that.  

Surgery is first.  Let us know the date and we will walk through everything with you.

Molly110 said:

USPC

Diane, I was diagnosed with USPC last August, started chemo a little over a year ago, and finished chemo in January.

My understanding from my doctor is that all USPC is considered Grade 3 because it's an aggressive cancer. It's also a rare cancer, so the chance of your friends being able to advise you is not high. You should get your advice from your doctor, specifically from an oncologist, and if at all possible from a doctor who is a gynecologist/oncologist. After your hysterectomy your doctor will be able to tell you what "Stage" you are, which they cannot know until they do the surgery. 

If your doctor tells you that you don't need chemo, I think you should get a second opinion. Your odds of surviving are much higher if you do chemo, even if you are Stage 1. From what I understand, some oncologists may not realize this if they are at community hospitals rather than academic medical centers, because USPC is rare, and "ordinary" uterine cancer usually doesn't call for chemo if a woman is Stage 1.

Even knowing that my chances of living were much higher with chemo, I almost decided against it. I was afraid of being sick from the chemo and not being able to work. I dreaded the thought of losing my hair, which, like you, I wore long. I hated everything about the thought of chemo, and enduring chemo every 3 weeks for 6 cycles seemed like an impossible ordeal. It was nothing like I feared. I didn't get sick, I worked the entire time, and I was shocked at how quickly it was over. Not everyone has an easy a time as I did, but I didn't know mine would be relatively easy, and I was so frightened of being hurt and of dying that I couldn't sleep or eat much until a couple of months after diagnosis.

If you are struggling that way, tell your doctor and care team. They will know how to help you and have meds available, too. I was reluctant to take anything, but a social worker friend talked me into taking an anti-anxiety med my nurse practitioner recommended, and it really helped me get through those first few frightening weeks after diagnosis.

You did not get this rare cancer from baby powder. Research results have been mixed, but the studies that suggest a link between cancer and talcum powder are mostly about ovarian, not uterine cancer. The studies that have looked at uterine cancer also have mixed results, with one finding a "slight" increase in risk --nowhere near 24% increase -- and the other studies finding no increased risk. (Here is what the American Cancer Society says:   https://www.cancer.org/cancer/cancer-causes/talcum-powder-and-cancer.html.) The reason I'm writing this is that it's a good example of the misinformation we can all come across online and elsewhere. If you decide to read up on USPC, it's best to carefully evaluate the source. I wouldn't trust what you come across in blogs or commercial sites. Look instead to the medical and science sites as well as noted cancer center sites, such as the Mayo Clinic, Memorial Sloan Kettering, MD Anderson, and others. Journal articles are other sources for accurate information, but you are likely to come across some very discouraging statistics if you look this cancer up in journal articles. After reading the first couple of sentences in the first article I consulted minutes after my doctor told me I had USPC, I closed the computer window and never went back to any article that discussed survival. There are many women who post here who have defied those odds.

Once you know your treatment plan, the women who post here will be a great source of information. 

I wish you didn't have to deal with this. It as, as someone told me when I first posted, the club no one wants to join. I hope it helps to know that there are many women here who are coping with the same thing and can share what they know from experience.

Warmest best wishes,

Molly

This is a really excellant post Molly, especially as regards chemo and getting a 2nd opinion if the doctor is inclined to skip chemo for an early stage.

I had a grade 3, Stage 3a endometrial adenocarcinoma which is the commonest and most treatable form of uterine cancer. It's pretty much the opposite of UPSC because it is hormone driven whereas UPSC has nothing to do with hormones. Endometrial adenocarcinoma arises out of endometrial hypertrophy whereas UPSC arises out of it's atrophy. While I don't have personal experience with UPSC, I have been on this board for over 4 years now and have seen where early stage aggressive types of uterine cancer seem more likely to recur in those who just have brachytherapy following surgery rather than both chemo and brachytherapy. This is just my anecdotal observation and not based on any studies or current recommendations, however.

The thing is, though, different doctors have different practices, philosophies, and degrees of experience for how they treat you. For this rare, aggressive uterine cancer you do not want to be complacent fighting it by taking just one doctor's opinion for how to treat you. This is a slow growing cancer ,so you have time to go for 2nd and even 3rd opinions to get a consensus that you can have confidence in before receiving treatment. Getting the right, aggressive frontline treatment is critical because this is when you have the best chance of a cure. Recurrences can be a lot harder to treat and the disease is going to be more of a chronic one then where you would be facing repeated rounds of treatment to keep progression at bay, so it is in your best interest to find a gyn-oncologist with experience with UPSC and perhaps also get an opinion from a major cancer center (many can do this remotely without you having to travel there).

The experience of going through chemo is very doable without a lot of hardship if you are in otherwise decent health. What you bring regarding health issues can have an impact, so some do have a harder time than others. I wouldn't fear it based on stories of others experiences from the past because it's been really fine-tuned for this cancer in recent years. There is a wealth of information for helping to get through it on this forum. 

I just wanted to really second Molly's advice for the 2nd opinion and a doctor with experience treating UPSC. I think both of those things are very important for your particular circumstances.

Diane The Fighter said:

Follow up: had surgery went well as could be expected THANK YOU

Hi Ladies and THANK YOU for all the info!! I couldnt find my way back to this website till now. I had my appt and surgery already and am home now day 5, Most of my staging is back and it is T1A for the tumor uitself UPSC and then separate the Endometerial Cancer as well both Grade 3. I have NO IDEA what treatment at this time till my follow up at 2 weeks out... Just radiation was mentioned at the consult if all contained or nothing at all. What is most of your experience on this aggressive cancer? I dont want to have a reoccurrence ever!! God Bless you all for what you have been through and thank you for your input!

Hi Diane, glad you found your way back. It will take you about 3 weeks to feel more normal from surgery. Things do get better day by day. A word of caution - make sure you do not lift anything above 10 pounds for the full 6 weeks post surgery. You need to give your body time to adjust to the "empty" spot. You don't want to tear anything while it is still healing.

Most people that I know that have UPSC get chemo and brachytherapy. It is an aggressive cancer and I wanted to throw everyting at it upfront to hopefully prevent a recurrence. I will be celebrating 5 years post treatment the end of January 2021. 

It took a bit to find your response. You may want to start a new thread so that everyone will see it right and give you more input.

Take care and I hope you heal quickly.

Love and Hugs,

Cindi

Diane The Fighter said:

Follow up: had surgery went well as could be expected THANK YOU

Hi Ladies and THANK YOU for all the info!! I couldnt find my way back to this website till now. I had my appt and surgery already and am home now day 5, Most of my staging is back and it is T1A for the tumor uitself UPSC and then separate the Endometerial Cancer as well both Grade 3. I have NO IDEA what treatment at this time till my follow up at 2 weeks out... Just radiation was mentioned at the consult if all contained or nothing at all. What is most of your experience on this aggressive cancer? I dont want to have a reoccurrence ever!! God Bless you all for what you have been through and thank you for your input!

Congratulations on the good and hopeful news that you are Stage 1! I think you should definitely get a second opinion from a gynecologist/oncologist with a lot of experience treating UPSC. The data is really clear that there is a survival advantage in getting chemo for UPSC. You may decide that you don't want to do chemo, but you should have the opportunity to talk with a specialist who can tell you why he or she thinks you need it.

I know there is at least one frequent poster who decided not to do chemo, but she made a decision after carefully considering the data and all of the information about her specific tumor and circumstances. I believe she is a nurse, and therefore in a really good position to make an informed decision. 

Even knowing the risk, I almost didn't do chemo. As it happened, it was so very much easier than I expected. That is definitely not everyone's experience, but there will be help and advice for you here from many women who have been through the "gold standard" chemo and radiation treatment for UPSC.

Molly

TeddyandBears_Mom said:

Hi Diane, glad you found your

Hi Diane, glad you found your way back. It will take you about 3 weeks to feel more normal from surgery. Things do get better day by day. A word of caution - make sure you do not lift anything above 10 pounds for the full 6 weeks post surgery. You need to give your body time to adjust to the "empty" spot. You don't want to tear anything while it is still healing.

Most people that I know that have UPSC get chemo and brachytherapy. It is an aggressive cancer and I wanted to throw everyting at it upfront to hopefully prevent a recurrence. I will be celebrating 5 years post treatment the end of January 2021. 

It took a bit to find your response. You may want to start a new thread so that everyone will see it right and give you more input.

Take care and I hope you heal quickly.

Love and Hugs,

Cindi

My goodness I can never get on here till the middle of the night and I am so tired I cant even figure out how to get a new thread,,,LOL Will try to, but I got some scary news today and was told it WAS IN MY abdominal wall, not sure if they got it all I wont know that till my 2 week follow up. A nurse just said it was positive for Malignancy in the Peritoneal cytology.... DId anyome else have that? That jas me worried and a whole week to go to find out more.

Thank you healing blessings for you all

Chemo is not fun but for many it is extremely effective. I was NED for almost six years because of chemo. My oncologist threw me right back into chemo because it was so effective for me and my CA125 has went down 63% after just two chemo infusions. I wouldn't dismiss chemo that has worked for many women and given them years and even a cure. 

I was diagnosed with UPSC in September 2019, stage 3C, grade 3.  I received a second opinion which I recommend to everyone.  I encourage you to find an academic center for that as they are the most current on research.  From what I have learned this is a very aggressive cancer and treatment is 6 rounds of chemo and 3 brachytherapy, even for Stage 1.  I think you might want to ponder over the response from Cindyc8876.  The reason for the chemo is to try and catch any cancer cells that may have been left behind and moved on.  The radiation is to help prevent local recurrence.  While these treatments are not pleasant, most people can manage them. The oncologists can be very helpful finding ways to deal with side effects.  I wish you the best of luck.  I think when you have more clarity on the diagnosis and staging, it will help with the anxiety all of this brings.

TeddyandBears_Mom said:

I had UPSC stage 1A. 
 

I had UPSC stage 1A. 

 

Just curious, did you have a positive malignacy for the Peritoneal cytology wash the checked after your surgery? I am trying to decide if I will have any treatment of convential medicine, I have heard some horroble things for the treatments. My Dr wants to do the 25 radiation treamtents then chemo. Doesnt seem like you can survive ALL that    

Thank you for your time

cmb said:

Treatment

Diane,

I responded to your question about radiation treatment on another post. But your post above makes me think I didn't answer your question correctly there. Most of us, including myself, have had radiation after chemo, not before. Some women had the "sandwich" treatment - 3 cycles chemo, then radiation and then 3 final chemo cycles. You wouldn't typically have radiation before any chemo, unless there is a tumor in particular spot, which doesn't sound like it is in your case. So you should clarify with your doctor the order in which they are recommending treatment. The positive wash would suggest they would want to do chemo first since that is a systemic treatment.

I had a different chemo treatment than is usually recommended due to the nature of my cancer. This was followed by external radiation as a preventive measure for future recurrence. But I recovered from the chemo quite quickly. And for me, radiation was easier than chemo (although other ladies have found the opposite to be true for them).

I'd recommend at least trying the chemo. Most of the women here have made it through chemo without long-lasting side effects (although see the posts about icing your hands and feet).

I have an aggressive type of cancer too. Chemo and radiation have kept me NED for over three years. 

You give me hope.  Newly diagnosed and glad I found this site.  I'll be back.