CSN Login
Members Online: 2

You are here

follow-up after surgery for high-grade serous carcinoma?

smargaret
Posts: 15
Joined: Nov 2019

Dear wonderful people on this discussion list,

I have good news, I think: after surgery a week and half ago the pathology report said that the cancer had not spread beyond the uterine wall; the tumor was less than 1 cm, so it was caught early.  The stage is listed as 1a.

I'm really happy (ecstatic is more like it) with this report.  But I have a question.  The surgeon said no follow-up was necessary--no radiation, no chemo, just check-ups every three months. While I'm pleased with that as well, my understanding of this aggressive strain of cancer was that they always followed up with radiation at the least.  I'm wondering what the experience is of others on this list.  I want to be prepared with the right questions for my post-op appointment.

Thanks as always!

cmb's picture
cmb
Posts: 432
Joined: Jan 2018

Great to hear that your cancer was caught early, although it is one of the more aggressive types of uterine cancer.

I'm sure others will join in, but in the meantime I suggest you read the section on high-risk endometrial cancers: treatment after surgery in the NCCN Guideline for Patients at

https://www.nccn.org/patients/guidelines/uterine/51/index.html

You'll see the "watch and wait" is only recommended in a very small number of patients. Your doctor may feel you fit this category, but it’s a topic warranting further discussion with him.

smargaret
Posts: 15
Joined: Nov 2019

Thanks so much for this resource!

Armywife's picture
Armywife
Posts: 350
Joined: Feb 2018

So glad to hear your good news!  My suggestion for you would be to get a second opinion. There was a great deal of confusion when my pathology came back and I asked for and received a second opinion from MD Anderson.  I believe most insurance situations allow second opinions.  This is an important decision, and it's important for your healing and your peace of mind to have clarity about your treatment plan.  (At first I was told medicine, then radiation, then chemo and radiation.  Upon completion of chemo, I went back again for a second opinion, and it was decided after much debate to reserve radiation for recurrence.  I did not have serous; rather endometrioid endometrial adenocarcinoma.  First pathology said Stage IIIA, Grade 1.  Second opinion said Stage IVB, Grade 2.  Can't get much worse than that, so I didn't get a third opinion.)  

karenjoseph's picture
karenjoseph
Posts: 2
Joined: Dec 2019

I too have grade 3 stage 3 1C. I just had my 3rd round of chemo and am feeling pretty worn out. I never had any pain, just spotting. Did you experience pain? My oncologist said we will finish the 6 rounds of chemo and then see if radiation is needed.I hope and pray all goes well for you!

Donna Faye's picture
Donna Faye
Posts: 316
Joined: Jan 2017

 I, too, was a 1a USPC in 2017 and was going to do only observation. However, my oncologist and the ladies on this board convinced me to do more. I have had some recurrence even with followup treatment. This is a stubborn cancer.

If I were you, I'd get another opinion. 

zsazsa1
Posts: 400
Joined: Oct 2018

Please go get a second opinion at a major cancer center as to whether or not you need chemo or radiation.  I believe that standard of care for your malignancy, at your stage, is 6 rounds of carbo/taxol, followed by vaginal brachytherapy.

Quilter_1's picture
Quilter_1
Posts: 65
Joined: Mar 2019

I had a good outcome diagnosed as 1a, but, my oncology gynecologist/surgeon advised me to have 6 rounds of carbo/taxol chemo and referred me to a radiation oncologist, who recommended 32 imrt pelvic radiation and 6 brachytherapy treatments. I had all of these treatments and so far, 9 months after treatment, I am doing well.  Serous carcinoma, UPSC, is a very rare and aggressive form of uterine cancer.  Get a second opinion.

Forherself's picture
Forherself
Posts: 293
Joined: Jan 2019

It is good your cancer did not spread outside the uterius.  But when describing the tumor they usually say what percentage to malignancy penetrated the uterine wall.  When you say it was 1 cm does it mean it penetrated the wall 1cm?   Stage 1A has lots of levels.  I think determining treatment is better when using the percent of unterine wall invasion.  It quickly becomes the standard of treatment to have what Zsa Zsa describes.  All 1A 's are not the same.  I would get a second opinion.  And read your path report again.  What does the 1cm mean?  

smargaret
Posts: 15
Joined: Nov 2019

Here's what it says with regard to the uterine wall.  My understanding is that this is why the surgeon said no radiation or chemo necessary, but I want to check with the oncologist at my post-op.

  Uterus, endometrium, hysterectomy and bilateral salpingo-oophorectomy
-  HIGH GRADE SEROUS CARCINOMA, MICROSCOPIC FOCI, < 1 CM
-  TUMOR LIMITED TO ENDOMETRIUM (NO MYOMETRIAL INVASION IDENTIFIED), pT1a
-  NEGATIVE FOR LYMPHOVASCULAR INVASION
-  PARAMETRIUM, CERVIX, OVARIES AND FALLOPIAN TUBES NEGATIVE
-  AJCC PROGNOSTIC STAGE GROUP (8th Edition 2018):  pT1a N0 M0 = IA

Forherself's picture
Forherself
Posts: 293
Joined: Jan 2019

The < means less than 1cm, and it says microsopic so small.   And there is no myometrial invasion.   The levels of 1A can include up to 50% myometrial invasion and you have 0%.   According to all reading, Uterine serous carcinoma limited to the endometrium does include observation only as the treaatment after full surgical staging.  Your doctor knows that the prognosis does not change when recieving treatment.   The recurrence rate is the same for some reason.  This explains your doctors recommendation.  AND the extremely difficult decision ahead for you.  To have treatment or not.  The second opinion will be very helpful in making that decision.  Also, I would request that your tumor cells be tested for genetic mutations.   It can help determin the aggressiveness of your tumor.  I think there was an article recently on the board that said this testing is now considered useful and is covered by insurance.

 

Northwoodsgirl
Posts: 570
Joined: Oct 2009

Glad to hear your good news! That being said I too would get a second opinion. I have seen too many people who were just doing the watchful waiting only to find out their cancer came back within a year. Insurance companies must cover second opinions. Call your insurance company and ask about coverage for second opinions. Your doctor should be respectful of getting a second opinion- you are advocating for yourself by getting a second opinion. Your doctor can suggest comprehensive cancer center for second opinion or your insurance company can help you too. Yes, like CMB suggests read the NCCN guidelines on your type, stage and grade of cancer. 

Lori

Donswife48
Posts: 307
Joined: Nov 2015

I had more/larger involvement in my uterous and microscopic findings in one lymph node.  I had 6 chemo cycles, no radiation.  Since I never had radiation, I can't speak with authority, but it seems like radiation can cause lasting serious effects.  Ask your doctor, but I would not hope for radiation for backup.  My doctor is casual, he's a watch for symptons, and so far, so good, 4 years in December was my surgery, and I'm grateful that my doctor isn't pushing scans, or tests.  Just watching. Also, it depends on the pathology report of cell findings, I have 25% serous cell mixed with endometrial cells.  Serous cells are the more agressive, so look at the report to see if you have any mixed cells or strictly endometrial.

 

Red Corvette
Posts: 107
Joined: Jan 2016

Very good news for you indeed with a staging of 1A but definitely try for a second opinion. As the warrior ladies have said, high grade USPC (uterine serous papillary carcinoma) is sneaky. When Mrs.Red was diagnosed 1A USPC with no lymph node involvement and we questioned the gyne/oncoligist about why not just watch instead of chemo and bracytherapy, he said "no way would I let me wife just watch with no treatment" Telling.

Red

Fridays Child
Posts: 112
Joined: Jul 2019

Glad to hear you caught it early.  As others have said, UPSC is nothing to play around with.  (No cancer is!) I had the ordinary endometroid adenocarcinoma, grade 1, stage 1a in 2012.  Had surgery and brachytherapy and went my merry way.  6 years later, recurrence was found in the pelvic wall, hip joint, and both lungs, leading to low dose carbo/taxol with radiation, followed by full dose carbo/taxol - and I'm still not NED, as the hip tumor is persistent.  You do NOT want a recurrence!  Please do get another opinion, and best of luck!

MAbound
Posts: 937
Joined: Jun 2016

As you can see from the prior posts, there's been enough experience with "caught early" serous uterine cancer that none of us feel comfortable with "watch and wait" treatment following surgery. This type of uterine cancer is a real ******* that you need to be equally aggressive going after as it is about coming back. Front line treatment is your best shot at a cure, so even though chemo and/or radiation is not fun, I wouldn't feel relieved about getting out of doing it for your diagnosis. Get a second opinion, even a third if you need a consensus, but your surgeon's recommendation for just check-ups is raising a lot of alarm bells here! 

MAbound
Posts: 937
Joined: Jun 2016

Since no one else has brought this up yet, I just want to throw this one other thing out there for you. If you do go for 2nd or 3rd opinions and whether or not you end up having  any adjuvant therapy, another thing you may want to understand and consider is having genomic testing to weigh into your decision. 

Genomics is testing that can tell one type or subtype of cancer from another, identify the DNA alterations that drove the growth of your particular tumor as well as understand the molecular basis of its growth. It can identify potential drug resistance if it exists before undergoing chemo. It's a tool an oncologist can use that gives him/her specific information to select the best course of action based on an individual's genetic profile or make a more accurate prognosis. To date, it's still not covered by a lot of insurances and not all doctors bring having it up, but you'll find there's been a lot of discussions about it here and the consensus is that it is really worth considering even if you have to pay out of pocket for it. 

You've been diagnosised with a really aggressive form of uterine cancer that is a whole different beast from endometrial adenocarcinoma. Even caught early it has proven devilish about recurring following detection and debulking surgery. It's why we are all concerned about a "watch and wait" follow-up based on a single opinion. It can be risky to be a passive patient when you get a cancer diagnosis. I don't say this to upset you or to say that your doctor is wrong, but rather because now is the time to throw the kitchen sink at this and have your best shot at not having it come back. Different doctors have different philosophies and practices for treating cancer and that is one of the things that make multiple opinions so critical. No one doctor, even a specialist, can or does know everything about everything. You need to have input from multiple sources to have confidence in whatever path you take. 

 

jjtrim's picture
jjtrim
Posts: 21
Joined: Mar 2019

After surgical staging, my mother was diagnosed a stage 1a UPSC, confined to an endometrial polyp.  Her oncologist told her no further treatment was necessary. We were not given an alternative. My mother's cancer recurred in 14 months with widespread metastasis, now stage 4B.  Please, please, please get a second opinion - and strongly consider the recommended adjuvant therapy for this agressive cancer - 6 carbo/taxol and brachy.  Of course, there are plenty of people who will recur even with the adjuvant therapy, but at least you will have some peace of mind that you did everything you could.  

zsazsa1
Posts: 400
Joined: Oct 2018

jjtrim, I was thinking exactly of what happened to your mother when I was writing urging a second opinion, but I didn't want to say it.  Thank you for chiming in.

jjtrim's picture
jjtrim
Posts: 21
Joined: Mar 2019

Please share my mom's story whenever it can help someone else. By sharing and learning from others, I'm convinced this forum has saved and extended so many people's lives. Thank you for thinking of my mom.

kansasgal's picture
kansasgal
Posts: 123
Joined: Aug 2009

I remain NED. I believe my UPSC was staged at 1a, although I also had endometrial adenocarcinoma staged at 1b. Following two "face-to-face" second opinions and one conducted by e-mail with a gyn/onc at Mayo, I opted to add chemotherapy and brachytherapy to my open abdomen hysterectomy surgery. Please read my "About me" page.

Sending big hugs as you contemplate the possibility of further treatment.

Sally

zsazsa1
Posts: 400
Joined: Oct 2018

Thank you for comiung back to post, Sally.  You and others like you offer great hope to those of us who are more recently diagnosed.

Armywife's picture
Armywife
Posts: 350
Joined: Feb 2018

Sally, thank you!  I am so grateful when I see long term survivors coming back to post.  It gives all of us great hope!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2661
Joined: Mar 2013

so good to hear from you, Sally!!

Forherself's picture
Forherself
Posts: 293
Joined: Jan 2019

https://www.mdanderson.org/documents/for-physicians/algorithms/cancer-treatment/ca-treatment-endometrial-web-algorithm.pdf

This would be helpful to read.  it does recoommend treatment even for 1A no invasion.

 

BluebirdOne's picture
BluebirdOne
Posts: 234
Joined: Jul 2018

conversation. I do not want to name anyone in particular due to their situation, but I know of at least one person that was in the same situation on this board (not jjtrim’s mom), for whom observation was their only treatment after surgery and their serous 1a turned into a nasty recurrence within one year. They realized too late that they may not have gotten the best advice. I was dx with 1a serous, with two risk factors, LVSI, and advanced age. I received 4 rounds of chemo, and three brachy. My second opinion was at Mayo and subsequently I received all my treatment there. They reserved pelvic radiation in case I recurred. I was dx in July, 2018, finished treatment October 2018, and am NED, one year two months. I was given the option of no treatment, but my team was very happy that I chose their recommendation to have chemo and brachytherapy. A second opinion will help you decide the best option for you and your situation. Good luck, and we are here for you. 

 

Denise

 

janaes
Posts: 787
Joined: May 2016

I wish i would have got to this earlier because i was in not the same situation but it was simmilar.

I had MMMt unerine csncer stage 2 gade 3. I realize thats a higher grade than yours. The part that is simmilar to yours is my doctor who did my surgery said i needed no chemotherapy. MMMt is also a agressive cancer. I was excited i didnt have to do chemo. My problem was another doctor told me i would need chemo. I ended up talking to 3 doctors and having a tomor board of about 7 doctors look at my cancer and did finally decide to do chemo despite what my doctor who did my surgery said. Many people on this group helped me decide too. As much as i didnt want to do chemo Im glad i did. 

So i agree with the others to get a second opinion.

smargaret
Posts: 15
Joined: Nov 2019

Again, I can't thank everyone enough for their advice based on their experience.  I feel much more prepared for my post-op appointment now.

 

Sue

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2661
Joined: Mar 2013

Sue, can you tell us what kind of institution you are working with?  Is it a large cancer hospital or a teaching hospital?  

Also, to address a previous comment regarding similar dx.  I think this board shows just how sneaky this disease can be.  Some of us with the "same" disease, and have undergone the same types of treatments, have had different outcomes.    Why some of have recurrences and others don't???  I just hope they find a cure!!!

As a note, I had UPSC, dx at 1a.  I had the chemo/radiation (external and brachy)/chemo 'sandwich'.  I am 7 years NED on 12/19/19.  I was always told it was my decision on if/what treatment I wanted, but for me, I wanted to do everything I could to defeat the beast. 

Please let us know what you chose to do.

Subscribe to Comments for "follow-up after surgery for high-grade serous carcinoma?"