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

MAbound said:

No Nonsense Advice

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! 

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. 

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.

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

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.

karenjoseph said:

Stage 3

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!

I have/had Stage IIIC UPSC.  I received opinions from the gyn/onc surgeon and Memorial Sloan Kettering in NYC.  Both said follow-up to surgery would be chemo and radiation.  They differed on how to do it.  I went with MSK as they are the premier cancer center (tho I guess the rating goes back and forth between them and MD Anderson).  I was told to have 6 rounds of carboplatin and taxel full strenght. Brachytherapy radiation was to be done in the weeks between chemo infusions.  I ended up having to have full pelvic radiation after completing chemo as the radiation oncologist saw a node she didn't like.  However, the research recommends the brachytherapy regime.  Having the chemo is important because this is such an agressive cancer that likes to move outside the pelvis.  Chemo helps kill any little cells that might have moved elsewhere in the body.  The chemo is hard and I found that doing any kind of physical exercise really helped, even just walking around the house when I felt I had been hit by a truck. I just finished radiation and the side effects have been minimal. I am still tired and don't have the energy I once did but that is supposed to come back in the next year.  I found out about my cancer when I had a bloody discharge, no pain.  I also had a blood clot and swollen ankle which can be associated with the cancer.  However, that came before the discharge so there was no thought it was due to something this serious.  My advice is always to get a second opinion and it is safe to read literature from the National Institute of Health on this cancer.  Just make sure it is recent.  If you can get to an academic hopsital, I would encourage that.  They are up-to-date on the research and will have seen far more patients with this rare cancer than a community doctor.  I would really question not getting radiation.  The cancer can recur on the vaginal cuff and radiation helps prevent that.   I wish you the best.  This is a long journey and a hard one.