Uterine Cancer Stage 4
Good Morning;
Last week I had a complete robotic hysterectomy. We received the pathology report and met with the surgeon this past Thursday. The findings were that the cancer has moved from my uterus to the fallopian tubes and on the surface of the ovaries. The biggest finding was the it has also spread to the omentum and, because of that the stage is 4. I will be going to an oncologist early next week to discuss chemotherapy treatment. Needless to say, I am frightened but determined to go the next steps. I am just wondering if anyone here has had a similar diagnoses and what has been your treatment. I did ask the surgeon if this was a death sentence and he said "no" there are women doing ok long after treatment.
Thanks so much!
Comments
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Yes I agree with your oncologist. Those women have been here. I would ask about genetic testing on your cells, to see which immunotherapy drugs will stop your cell growth. Maybe he is already doing that, but sometimes we have to ask for that. I cannot comment on treatment. But there is lots of information here. It is important for you to know if they removed all the visible cancer too. It will help with treatment decisions. I was surprised to learn that treatment is not a cut and dried entity. Doctors vary in the treatment plan. Its good if your facility has a tumor board because one doctor can present a case to the board and get other opinions from the doctors present. Your diagnosis and surgery has progressed very quickly. It is a lot to absorb. We are here to support you 🙂
Sue
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You’re in a very stressful position right now, but please keep in mind that there are a number of new therapies that weren’t available just a few years ago. I agree with Forherself about having some genomic/genetic testing done to determine which treatments might be most effective for you, if this hasn’t already been done.
And while we’re excited that new treatments are now available, I just want to remind you that conventional therapies can also work for some people. I’m still NED almost five years after treatment ended for an aggressive form of uterine cancer. And my mother struggled for several years with cervical cancer that spread to other parts of her body, despite different chemos and multiple surgeries. However, a new doctor wanted her to try a newly approved chemo (this was back in the 1980s) and she agreed. Notwithstanding the odds, that new chemo worked and when she died some years later from other causes, she was still cancer free.
Please keep us posted on what the doctors recommend as your steps and ask any questions you may have. We’re here for you.
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Sorry to hear about the diagnosis. It is a very stressful. Your situation is very similar to my mother, who is currently undergoing treatment. However, she had to have a full open surgery (originally it was planned to do a complete robotic hysterectomy). Her cancer started in the uterus and there were evidence of the disease that gone spread to the tubes, ovaries, etc, which were removed. They removed 10 pelvic lymph nodes of which none had cancer and removed a bit of the omentum as well as there were evidence of cancer there. Pathology report staged her at diagnosis at 4, UPSC, which is the more aggressive and rare type of endometrial cancer. Surgery was a success and they claim the got everything. However, because of its stage, it was recommended she go through six cycles of chemo, the combo of carbo/taxol plus Herceptin. Six cycles done, and she was deemed "cancer free," if that's even a thing. 3 months later post chemo visit, she went to her doctor for an exam and her doctor found some vaginal tissue scaring, which was biopsied and determined to be a recurrence. Long story short, a CT scan was done and we later found there were some new lesions concerning for metastatic disease as well as omental disease/mesenteric lymphadenopathy. I don't know what to expect at this point. The next line of treatment that's recommended is an oral target therapy treatment as well as an immunotherapy (combo of pembrolizumab/lenvatinib). We're hoping these would control and stop the cell growth. Trying to remain hopeful and it hurts to see someone you love go through this. 😥
Keep us posted on the doctor's recommendation! We all have each other for moral support.
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I agree with cmb, there are treatments that were not around just a few years ago, and on a genetic level as Sue said, important to finding other treatments.
There are great tips on dealing with chemo. You will hear/see it is "doable", meaning it isn't a party but you can make it through it with good anti-nausea meds etc. Again, I think cmb posted that thread at the top on tips. While new, novel treatments are being developed, the carbo/taxol chemo has not.
Hugs dear. You are not alone.
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I'm new here and also have stage 4 endometrial cancer. I found a program by Chris Wark on ChrisBeatCancer.org. It is called Square One. It has been amazing for me and through them I found another organization called HealingStrong.org. You might want to check these out as they can help along with conventional treatments. Many people are healing their advanced cancers naturally! Hang in there. I know how you feel. Sending prayers.
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Just saw your post. So sorry about your diagnosis. I was scheduled for a “routine” hysterectomy. They did not think I had cancer. I ended up having cancer in my uterus, cervix and ovary. I then had to go through another staging surgery and they took out my appendix and omentum as they said that’s where it could go next. I did not have Stage 4, but Stage 3A, Grade 2. I ended up having two more occurrences and currently had a surgery to remove all my scarring. I was 45 when first diagnosed. I went through chemo and then brachytherapy. I just turned 62 this year. I probably had over 55 lymph nodes removed from all my surgeries. You can do this. My best to you. If you have any questions, please ask.
(((Hugs))).
Kathy
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Hi all, my 67 year old mother got diagnosed with high grade serous adenocarcinoma a few months ago. It is stage 4 because it metastasized to liver and lymphnodes (mostly abdominal and some paraaeortic) Her scans after 4th round of carbo/taxol showed great response so far and now surgeon will decide if surgery will happen after 6 or 8th chemo.
Im thinking if we can treat with chemo as much we can before surgery would be better?
Can they remove lymphnodes throughout the body?
Anyone with similar experience? I would greatly appreciate your learnings.
hugs and love,
ghernand
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Sorry to hear about your mother and what she is going through. I know how hard it is on you both! Just remain positive and be strong! That's the plan...for the immunotherapy drugs to work alongside the immune system to help prevent the spreading and growing of existing cancer cells. We were hoping the surgery and chemotherapy would catch everything but given how aggressive (and rare) USPC is, it was likely that a recurrent would occur.
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Thank you, knowing that we’re not in this alone really helps. Our gyno oncologist here in Florida also mentioned those two medications for immunotherapy you mentioned levantinib and prembrolizumab.
is your mom doing any clinical studies?
I just hope that there is more advances in medicine soon for the more aggressive types. My mom has high grade serous adenocarcinoma which is also aggressive and rare.
hugs and love
ghernand
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Hi Ottobar! My mom has stage 4 - just finished her 5th chemo and it’s not so bad. She hasn’t had surgery yet. That’s coming soon. Out of the 5, the first one was the toughest one and what I mean by that is that she had a few days that felt like the flu and then she was back to normal. Drinks lots of water before and after each treatment. The worst part for her was the constipation but after a few days she was fine. She did take something to help with that. There were 2 days where she didn’t eat much so we bought her electrolyte water to help keep her hydrated - this helped. She drank a lot of chicken soup too during those days to keep her protein intake.
you can do it!
hugs and love
gleidys
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Hi Kaleena, happy you survived all of that. My mother just started the process. Her uterine cancer spread to the lymphnodes.
I do want to ask you, did they remove all those lymph nodes due to cancer?
what are the side affects of removing them?
thank you
ghernand
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@ghernand We haven't considered any clinical trials yet. We are waiting to see how she responds to keytruda + lenvima. She's starting week 3 on keytruda/lenvima; so far, surprisingly no side effects. Tolerating really well, which is promising. We're hoping this treatment further shrinks, prevent from further growth, if not, eliminates the tumor(s) all together.
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