Serous cell treatment

PontoonHappy

Hi, I am new here, had robotic hysterectomy Jan. 14, 2022. Med onc recommending 3 brachytherapy radiation only, no chemotherapy. I am Stage 1A mixed serous and endometrioid, no myometrial invasion. Seems most people are getting chemotherapy too. I am nerovus about recurrence. I'd love to hear from long term survivors with a similar story (radiation only, mixed cell). Thank you

thatblondegirl

Welcome, Nancy

I’m so sorry you needed to find us, but glad you did.

I can’t answer questions about serous because that’s not the kind of cancer I had, but many women on this board have, and I’m sure they’ll be along to help. There are lots of long term survivors here! I’m not really a long term survivor yet…my last chemo was a year ago, but I’m good now!

I wish I had noticed something when I joined here! Of course, I was panicking with a new cancer diagnosis, and desperate for help and hope!, so I wasn’t paying as close attention as I might have to what I was doing! So, I used my first name as part of my screen here. I don’t mind at all signing things with my name, but I really wish I had chosen a different screen name. I didn’t see the fine print about this being a public forum, which means people can read and read to their heart’s content without being a member. They could do searches and threads could pop up (I think?) We exchange very personal information about ourselves here, and I really wish I felt less vulnerable to the public at large. It appears you have used your full name. If any of that bothers you, you might want to change it now before you get too far along! I’m not even sure you can change it, but I’ve been around a while and thought it would cause a lot of confusion if I tried!

Hugs, Alicia

CSNSupportTeam

Thank you for that reminder, @alicia2020. If either you or @NancyLeeDomenica would like to change your username, please reach out to us using the Contact CSN button above with your new username choice and we can make the change for you.

Thank you both for being a part of our CSN community.

Forherself

Welcome Nancy. I have a few questions for you. Are. you seeing a gyneoncologist in addition to a medical oncologist? The gyneoncologist would have more experience with serous endometrial cancer, which is less common that endometrioid. At your stage, there is variation on the treatment given. If you are at a cancer center, you could ask for the tumor board to review your case. Or you can seek a second opinion as mentioned above. Did you tell your oncologist you are wondering about chemotherapy? There are risk factors that make a recurrence more likely and you could ask if you have any of those. Did you have LVSI? Tumor in the lower part of the uterus? Are you older? There are also factors that make you less likely to recur. I would have a discussion with your oncologist first about your concerns.

PontoonHappy

Thank you for the comments, questions and support. I feel better already being on this board.

1. Gyne/onc did my surgery, she was wonderful and very direct and serious. She said from the beginning to expect chemotx with serous cells, but med onc said surgeon knows protocol so he was surprised she said that. When I went for follow up surgery check, surgeon did not seem on board with me getting radiation only, but said that is med onc area of expertise. Previously surgeon said "I would do it" when we talked about chemotx.
2. I'm at a major cancer center, so I will check on Tumor Board, thanks.
3. I really challenged the med onc on chemotx and we had a long discussion, he advised that chemotx would not give me any advantage re: recurrence over radiation. Pulled up 2022 NCCN guidelines on computer which said brachytx.
4. No LVSI, no myometrial invasion, clear sentinel nodes, clear peritoneal washings, benign omentum, no cervical stromal involvement, 1.5 cm tumor located posterially in endometrial cavity, 65 yo active and generally healthy (Have 2 lung conditions that are stable, no meds)
5. Thanks so much for all of this, it's really helpful.

Forherself

https://csn.cancer.org/discussion/comment/1694579#Comment_1694579

Well we are all here for you! It was a surprise to me all the uncertainty about treatment and I am a nurse. You might ask to see the studies your oncologist follows. My surgeon was my oncologist too. Medical oncologists treat different types of cancer. BUT I have read the studies that show chemo does not change survival rate for stage 1A serous carcinoma. Women who don't recur tend to drift away from the board so you hear more about recurrence here. My case was different too. I am serous 1A with no residual cancer in the hysterectomy specimen, clear scans. I was told they do not have any data on how to treat my stage. AND I could recur even with chemo and radiation . So I was given the choice of treatment or no treatment. I chose no treatment. It makes lots of people uncomfortable. I am almost 4 years out from surgery, no recurrence.

You don't have a lot of risk factors for recurrence. BUT as we all know here we are a statistic of one. There are not guarantees no matter what we do.

PontoonHappy

https://csn.cancer.org/discussion/comment/1694567#Comment_1694567

I think it’s a good idea to change my user name when I click Cintact CSN I get message that says I don’t have permission

PontoonHappy

https://csn.cancer.org/discussion/comment/1694592#Comment_1694592

https://csn.cancer.org/discussion/comment/1694566#Comment_1694566

Thanks so much & good suggestion on user name

thatblondegirl

Hey, Nancy! I’m glad my suggestion helped yiu!

I haven’t tried it yet, but I’m going to! I have to decide on new name!

Are you logged in? It may be that you’re on their page, but you can’t actually DO anything unless you’ve logged in! Try that!

❤️, Alicia

thatblondegirl

Looky There! New screen name! Thanks so much CSNST!

😎, Alicia

woodstock99

Hi - can not be of much help with your specific diagnosis but you can always get a 2nd opinion from places like MD Anderson, etc virtually which I did and which helped me with a treatment decision. Best of luck.

PontoonHappy

https://csn.cancer.org/discussion/comment/1694614#Comment_1694614

Great idea thank you!

Harmanygroves

https://csn.cancer.org/discussion/comment/1694592#Comment_1694592

CSN Staff! please help this member change her name. She's having some issues contacting you.

thank you, and we love you.

Deb 2

Lyn70

Alicia,

Love your new thatblondegirl moniker.

I could change mine but I refuse to replace the 70 with the accurate 72! Enjoying almost 2 NED years with all you great ladies.

Nancy Lee,

I hope you get the answers for treatment you need, a second opinion is a good suggestion. I decided I would seek one if I ever doubted my GO.

Harmanygroves

https://csn.cancer.org/discussion/comment/1694703#Comment_1694703

ha ha! two years NED is worth noting, you little wonderwoman!

Frances081920

I have serous endometrial stage 2. My gynecological oncologist didn't think I needed chemo or radiation, but the medical oncologist said that chemo and vaginal brachytherapy is recommended for all serous even stage 1. I had read in one of my support groups several people had stage 1 and had surgery only or surgery with vaginal brachytherapy only, and they had recurred about 1 year later with distant metastasis. I elected to have chemo and vaginal brachytherapy and am 1 year post completion of treatment, still NED. I had 16% myometrial invasion, no LVSI, negative omentum, but did have focal cervical stromal invasion, even though it was contained within the uterus . My tumor was less than 1 cm and was on the lower posterior uterus. Only you can decide the best course of treatment for you, but I would recommend that you get a second opinion and wish you the best. This is a great group of people, I am always uplifted and encouraged when I visit.

BluebirdOne

BluebirdOne

Lyn,

Congrats on the two years NED! Woo Hoo!

Denise

Lyn70

Thank you, Denise.

I am saying almost 2 years NED since my hysterectomy was in December of 2020. I am counting rather optimistically because most statistics count NED from completion of primary therapy. We are statistics of one so I count from the day in September 2020 when I learned the results of my biopsy. I could have had distant metastases at any time, even during treatment, but I have not!

Frances, sending you ((Hugs)) and hope you are obtaining some beneficial consult on your treatment plan.

Willow oaks

I was Stage1a no cancer before recommended chemo & Bac radiation. My MDANDERSON said that was standard recommended care for Serous Carcinoma. Then recommended wait no CT just regular exams unless systems occur. Had some vague symptoms that seemed explainable and other than general stomach bloating or discomfort they can and went during a 3 month period. My local oncologist was never comfortable with edit for symptoms approach and wanted a scan …I went along to not tic her off and MD Doc said if she wanted to order one it would be OK. She found extensive Peritoneal tumors in my abdomen area. I’m scared to death! Don’t know which way to go. Looks like the only thing close to me is standard of care option of chemo /tax/Avastin…there was a trial with two other hopeful meds but some would get a placebo fit 28 months…The trial was closed right before she tried to get me in. There are a few others 3 to 6 hours away that b me at be open. MDANDERSON is 10-11 one way drive & nearly all options are infusion every 21-28 days…I did my 1 st standard of care close in Memphis as it was what MDANDERSON would have done anyway. I did surgery & radiation trial at MDANDERSON. I’m regretting doing the wait for systems approach as it turned out. May have been easier to repress before extensive. So far appears to be mainly floating around in peritoneal with a few nodes to “watch”. If you have P53 issues mentioned on your reports look out as that can make reoccurrence more likely. I’m studying diet life style changes seriously this time around looking at supplements ect…fasting ….ways that might help natural elimination of bad cells and improving good ones. Trying grape seed extract, frankincense. & Brazil Nuts (1-2) per day. May try metformin many with the p53 issue say it helps. Anyone that has had this type of spread please let me know how it worked out for you and what treatment was used with what success. I feel I don’t need to wait around long making up my mind and to at least start SOC to see if it works rather than wait while it spreads or grows.

Willow oaks

I was nearly two years supposedly NED when my local oncologist discovered the spread after no scans other than the one a

fter the first chemo finish & there was no cancer to be found at that time or before the chemo either.