Dealing with stage 4b Serous Uterine Cancer

Dave,

So sorry to hear about your wife. This is a crappy cancer. I don't have suggestions on alternatives but am wondering if immunotherapy was discussed as an alternative for her?  I hope others with more knowledge than I have will come along shortly and give you more input.

Glad you found this board. You will find everyone here supportive and willing to share their experiences and knowledge.  Also, please take a look at one of our members profile - TakingControl58. She has documented her journey and was also stage 4 with some interesting therapy solutions.

Please come back and let us know how your wife is doing and ask any questions.

Love and Hugs,

Cindi

Lou Ann:  Glad to hear you have had that year.   I am hoping to have two to see my daughter graduate from high school.  You have given me hope that I can maybe make it, even if it requires much treatment.  Thank you.

Dave:  I feel for you.  My husband broke down for the first time on Friday with the last bad news.  He was upset with himself because he knows I hate weakness.  I hugged him and told him the truth, in this case it's okay.  It isn't really even weakness it is just a feeling.  Frankly, he has been so tough up to then that I wondered if he really cared, although he has been very supportive every step of the way.  I have my answer and just suggest you and your wife be open, honest and caring.  Nobody fighting this disease or supporting a spouse fighting it is weak.

Hi Rose, 

I see that you haven't gotten a response to your post. I have endometrial adenocarcinoma instead of UPSC, but at a Stage 3a, grade three I am also at high risk for recurrence and understand your concern about what's next for you.

In a bit after chemo, you'll probably have another CAT scan to see what the chemo has done for you. You may be NED, or they may find that there's an area that they can aim radiation at that would be effective. Remember, chemo is a systemic treatment, and radiation only treats what it's aimed at, so it's use can be nixed if there's cancer where they can't realistically aim. Most of us that get radiation get pelvic and vaginal because that's where recurrence is most like to happen and if yours is already beyond those areas that may be why your doctor is thinking your not a candidate for it.

Because your oncologist is hedging about risk/benefits of radiation for stage IV, I think it might be in your best interest to seek some second and third opinions from other gyn or radiation oncologists about what to consider next. That's why keeping your all your records comes in handy.

Metastatic cancer is not necessarily a death sentence; many of us see it as more like a chronic disease that you have to keep at to keep under control just like diabetes. There are other options out there besides radiation for continuing treatment that would be helpful to become aware of. It's a lot to slog through, but there are others on the board with stage IV that are living with it and you can find a lot of information about how they are doing that if you keep reading. Did you ever have any genetic or genomic testing? It might be a good place to start learning and questioning your doctor about.

I'm sorry I don't have a definitive answer for you, but there are so many variables to this cancer that that's not really possible. The thing is, don't stop learning and asking questions and pushing your doctor(s). You really can't be passive about fighting this beast and have to be your own advocate. No one doctor knows it all, so you have to take some of the research and learning into your own hands.

Congratulations on getting through chemo!

Dave, I recommend bringing up genomic profiling with her oncologist. Determining the particular gene mutations in one or more tumor samples can potentially help in determining if there are treatments including immunotherapy drugs and possibly clinical trials that could be helpful. There are multiple organizations that offer this. I went through Foundation One which you can google. Sometimes it may be necessary to press the issue a bit with doctors. Let us know how she's doing.

Many thanks to MAbound, NTFC, and ckdgedmom for responding to my post.  Now that the 6 rounds of chemo are through (and I am starting to feel better), the plan ahead is to get

CT scan, consult with radiologist, then consult with oncologist to determine the way forward.  Looks like MAbound is quite accurate about what was to be expected.  Can we say, then,

that the path forward is uncertain, and requires vigilance, and an openness to treatment options?  The difficulty beyond the physical is the desire for clarity where there is none.

It is so helpful to hear that there are people out there that understand and also live with this.  Thanks again for responding.  I will check in from time to time.  Rose

I finished my sixth chemo on 10/10/17, and have had consults with Radiologist and Oncologist. Also, my CT scan came up clean.  It was decided that radiation would not benefit

my condition in any significant way, so it was nixed.  I am (for now) out of treatment.  I will be monitored every three months and examined by oncologist.  Also, there will be the

monthly visits to flush the port.  So here I am - NED.  Not spiking the ball here; I worry about recurrence and what the signs might be.  I feel so fortunate to have gotten through

the chemo reasonably well.  In the near future I will be seeing a geneologist and looking into genomic profiling.  Thank you all for being here to listen and guide 

Dave, 

I am also going through this. Diagnosed adenocarcinoma tumor in uterus in may 17, radical hysterectomy June 9. Bladder was injured which led to a whole different issue that I won't go into but it postponed my start date of treatments which finally began Aug 14, 2017. Did 6 cisplatin infusions along with 35 radiation treatments. Finished both Sept 20.  Now, going back to right around the time I started treatment,  I had a knot under far right incision on my abdomen that I brought up several times but Dr kept saying it was scar tissue and for me not to worry because my margins & lymph nodes were clear.. Well, it continued to bother be and each time I spoke with my Dr(we texted often because of so many other bladder issues) he would dismiss it. Finally on Oct 26 I had surgery to go in and remove so called scar tissue,  expecting to wake up with 2 tiny incisions over the exact spot from original surgery, and expecting to go home the same day and return to work shortly thereafter since I had just gone back to work. But instead when I was on the table, he clipped tissue and sent to pathology who the confirmed that it was cancer and not scar tissue so Dr connects the dots and I have a 7 inch incision and the cancer was under both scars and had wrapped around my muscle. Next step, he sends me for PET scan and low and behold there was cancer under the remaining two incisions from original surgery. So basically the cancer attached itself to all 4 incisions from the original surgery and I had 3 surgeries to remove from abdominal wall. Dr stumped. Says it's so rare. So now I start chemo again in 2 weeks (last surgery was one week ago today) but this time the regimen will be cisplatin, taxol, and Avastin once every 3 weeks for 6 months. I am so stumped and scared and I honestly think that it's a guessing game with the beast we're dealing with. I am a single mom and self employed and the Lord has provided and I trust Him. However, it's hard not knowing what comes next. Please update on your wife and new info you find.

Blessings to you,

Pam

OH Rose, so sorry to hear this! But, I'm glad they caught it early. I hope you are able to tolerate the weekly chemo and find yourself dancing with NED on the other side. 

Please come back often and let us know how you are doing.

Love and Hugs,

Cindi

I will be beginning treatment (taxol/avastin every week for three weeks, for six months) very shortly.  I am pretty much in constant discomfort.  My abdomen feels like muscles are being

ripped whenever I sneeze or hiccup.  I can't help but think my days are numbered, but I have to give the chemo a chance to shrink the tumors.  Who knows, maybe it will be effective.

My partner is suffering so; I hate to see it.  In my mind, I believe that immunotherapy is my only hope.  Seems like a tiny number of us can be helped by what is approved for treatment.

How do I find out if I am one of the few who could benefit?  At the time of hysterectomy, pathological report states that I am negative for "Lynch Syndrome".  My oncologist believes this means

that I am not eligible for immunotherapy.  I like my oncologist, but I just don't understand what all of this means.  As I am becoming more and more uncomfortable, I wonder if I will have the

energy to keep running through this maze.  Rose

rdifatta said:

What about Immunotherapy??

I will be beginning treatment (taxol/avastin every week for three weeks, for six months) very shortly.  I am pretty much in constant discomfort.  My abdomen feels like muscles are being

ripped whenever I sneeze or hiccup.  I can't help but think my days are numbered, but I have to give the chemo a chance to shrink the tumors.  Who knows, maybe it will be effective.

My partner is suffering so; I hate to see it.  In my mind, I believe that immunotherapy is my only hope.  Seems like a tiny number of us can be helped by what is approved for treatment.

How do I find out if I am one of the few who could benefit?  At the time of hysterectomy, pathological report states that I am negative for "Lynch Syndrome".  My oncologist believes this means

that I am not eligible for immunotherapy.  I like my oncologist, but I just don't understand what all of this means.  As I am becoming more and more uncomfortable, I wonder if I will have the

energy to keep running through this maze.  Rose

I had an incisional hernia caused by my surgery.  I have to wonder if you might have that, too, with the description of your pain with movements like coughing or sneezing.  My hernia started  when I was working out on my Pilates, but other things can also cause it, like lifting, for example.

I saw a show on complications caused by mesh used for various procedures.  One woman said she was in constant pain and felt like she had sandpaper inside her rubbing her when she walked.  The mesh decomposes after a short time.  Do you have anything like that in you, maybe from a prior surgery?  Just a thought.