In shock UPSC IIIC diagnosis (Incomplete Staging) Update

rcdeman said:

Update on Mom and Questions

I have a short update and some questions:

Update:
So I went with my mom to the appointment with the gyn/onc today. Basically, he admitted that her staging is incomplete because he did not remove the omentum and para-aortic lymph nodes. This means it's possible that she could be Stage IV and not even know it. I'm very unhappy about this, but I what's done is done, and we must go onto do what's best for her. So, the plan right now is to get a PET/CT scan done (approval will take 3 weeks, he says), and based on what the scans show, we would either proceed to:

1) If there are visible spots of cancer spreading that can be surgically removed, a second surgery will be performed before her chemotherapy treatment,
2) If there are no visible spots of cancer in the scans, we can go straight to chemo,
or
3) The worst case scenario, the cancer has spread beyond the point of surgery, in which we would just proceed to chemo.

I am praying for number 2, because then she won't need to suffer another surgery which would delay her chemo treatment as well as having to recover from a second surgery.

That being said, the doctor wants her to heal up a bit more from her hysterectomy a bit more before doing proceeding on to the next step. He says we will have to wait about 6 weeks after her first surgery before we can go on to anything else. Meanwhile, he'll be referring us to the medical oncologist to discuss chemotherapy treatment after PET/CT scan.

Okay, here are my questions:
1) How long did it take you guys to heal up from your hysterectomy?
2) And how long did you have to wait before you went onto the next treatment step (whether it be chemo, RT, or another surgical procedure)?
3) And finally, how long did it take your insurance to approve your PET/CT scan?

Thanks all! Still need your prayers that during these next weeks the cancer hasn't metastasized anywhere and is contained.

Rebecca

Hi Rebecca, it took me about 4 weeks after surgery to feel like myself and to start working again (part-time at first). Here is a summary of my timeline:

9/3 - D&C

9/8 - Diagnosis of uterine carcinosarcoma (aka MMMT) received

9/10 - Appt w/Gyn-Onc

9/19 - CT Scan

9/23 - Surgery (TAH-BSO + 14 lymph nodes)

10/7 - Follow-up w/Gyn-Onc - treatment planned / allowed to return to work

11/4 - 2nd opinion appt

11/11 - Port-A-Cath implanted in chest

11/12 - 2nd opinion diagnosis received

11/20 - 3rd opinion received

12/1 - started chemo

As you can see from this timeline, it took about a week for the first CT scan to be approved. My understanding is that my insurance doesn't cover PET scans unless they are considered absolutely necessary by my gyn-onc. I've had 3 CT scans so far and they've all been scheduled and approved very quickly.

My chemo treatment was delayed about a month because the 2nd diagnosis came back different than the 1st (high-grade endometrial stromal sarcoma) so I had to get a 3rd. Ultimately, that 3rd one confirmed that it was uterine carcinosarcoma so I finally started treatment. I don't know if that delay will make a difference in the long run (I am currently NED) but it was important to me to wait because if the 2nd opinion had been confirmed, then the treatment would have been much different.

Hope this information is helpful to you and your mother. Kim

beccabtown said:

Here's an interesting angle

Here's an interesting angle on the pros and cons of the sandwich regimen. I have two oncologists, the gyn onc who performed my surgery, who is in a different city, and the local onc who oversees my chemo treatments near home. Before I started chemo they had a discussion (disagreement) about  whether or not to do the sandwich regimen. My radiologist explained that in general surgeons and radiologists prefer the sandwich technique because they're more aware of the need to zap the region where the cancer was in order to prevent local recurrence and sterilize the lymph nodes; oncologists, meanwhile, prefer to do the full course of chemo first because they are thinking about/responsible for the possibility of distant metastases. He also said that neither approach was more right than the other (that there is no conclusive evidence that one or the other is more likely to be effective). He claimed that he would stay out of the discussion and let the other two work it out. In the end, I believe the deciding factor was a PET scan that showed no activity except for pelvic/para-aortic lymph nodes that were already known to be enlarged, so the local onc was willing to go along with the sandwich regimen.

The radiologist also told me, very unhelpfully, that things might change anyway if I didn't tolerate the chemo well, which was likely. So far (knock on wood) he's been wrong about that last part. I believe that some of the people who choose radiology as a specialty do so because they don't really like to interact with people, and this is why their bedside manner often leaves much to be desired.

Lol! That would explain my radialogy oncologist! Samdwich was never explained or given an option for me. As I've said before I didn't find this site until it was starting, the radiation that is. I haven't seen anyone else on this site having radiation after surgery and before chemo. Oh well, so far it has worked ok. Time will tell with me.

Hi Rebecca,

Sorry for the slow reply, I only periodically visit here.  I don't know about the difference between small-cell undifferentiated carcinoma and UPSC either.  I just know that at the time I was very sick and they said my type of cancer was rare and very aggressive, and they started chemo and radiation treatments right away.

Wishing you the very best always,

Susan

rcdeman said:

Just a small update:

Just a small update:

I'm a bit worried. My mom said her lower abdomen has been feeling more painful starting last night. This is supposed to be starting to get better, right? She was doing pretty well the first and the start of the second week. Other than bloatedness, she said she didn't feel any pain. She was even able to get off her pain medication on the 4th day after surgery. The fact that she's feeling pain now after so long worries me. She mentioned that she's worried about metastasis earlier this morning, and now I'm feeling anxious. She knows her own body best right? What if her fears are accurate? Waiting for this PET/CT scan approval as well as the appointment with the chemo doctor is now something that really needs to hurry.

I had discomfort and "tugging and pulling" feelings in my abdomen and around my abdominal hysterectomy incision off and on for about two months after my surgery--after the incision itself was largely healed. It may have been my imagination, but it seemed like the first couple of chemo treatments stimulated my hysterectomy incision and my chemo port incision, making them tingle a bit. By three months after surgery, I suddenly realized that I was no longer having any discomfort related to the hysterectomy. Healing is not a unidirectional process. I was told to call the doctor if I developed a fever over 101.5, if there was discharge from the incision, or if there was new redness.

My first chemo was six weeks after my hysterectomy. The PET scan was five weeks after the surgery; according to my doctor, that was the minimum amount of time one needed to wait to do a PET scan because of the radiation involved.

I am new to this site.  I was diagnosed with 3C endometrial cancer in 2011; had 3 chemo treatments, 28 external radiation treatments, 2 internal radiation

treatments, then 3 more chemo treatments.  The following year I was diagnosed with stage 2 colon cancer and had a hemicolectomy.  All was well until

May of this year when a nodule was seen in my left lower lung.  I had surgery in June and the pathology results showed endometrial cancer metastasis.

My gyn oncologist offered chemo but said there was no guarantee it would be of any help.  I chose not to.  Yesterday I had another CT scan and will

see him to discuss the results next week.  Fingers crossed. 

  I am disappointed that the cancer has returned but hope for the best.  As it is, I am dealing with bowel issues from previous radiation.