Endometrial Cancer: Noticing my blessings every day

I got cervical cancer which spread to my vagina when I was 74. Because the common practice is to stop doing PAP smears when you reach 65, by the time I was diagnosed , it was Stage 3. Apparently, a different technique is necessary when doing PAP smears on older women as the cuff of the cervix rolls under and a regular PAP smear misses the cancer. At least this is how I understood it. Anyway, older women seem to be getting cervical cancer at a higher rate and so PAP smears should not be cut off so early. I was perfectly healthy when I was diagnosed and now after being NED for 4 years, I have metastatic cervical cancer which my doctor says will give me 3 more years max. I hope she is wrong.

Colleen,
Your post was a great find for me, as we had almost identical diagnoses. Thank you for sharing your specifics. I hope you are still doing well with the lymphoma. It's helpful to know you did so well with the chemo, though I note your hiatus due to low WBC's.

What follows is a description of my own cancer journey to date, in hopes someone else can identify with or benefit from my experience:

My only symptom was a few drops of blood in the toilet which could have easily gone unnoticed. Ultrasound revealed a mass in my uterus, and I underwent a radical hysterectomy 2 months ago. Pathology revealed uterine carcinosarcoma. Sentinel nodes, pelvic washings were negative and my CA-125 was normal. The cancer was entirely confined to a polyp in my uterus with no myometrium invasion. My GYN-oncologist's recommendation was 3 rounds of chemo (carboplatin/taxol) @ 3 week intervals, then 5-6 weeks pelvic radiation, then 3 more rounds of chemo. Interestingly, he did not tell me my stage when he gave me the diagnosis, and kind of left me hanging as to whether a CT scan that he promptly ordered would be affect the diagnosis. I had the CT scan soon after our initial meeting, and was later told by one of the chemo nurses it showed "a couple of spots to monitor, but no tumor masses elsewhere"; my GYN-oncologist did not respond to a request for a phone call to clarify this. I was confused.

Thus, when a friend offered to use a "connection" to get me an appointment @ MD Anderson Cancer Center in Houston I jumped at the chance (would have happily taken an offer to go to Mayo!). Less than a week later I met with one of their GYN-oncologists for a 2nd opinion. MDA reviewed all the existing pathology, ultrasound & CT reports. They also obtained the original slides from my surgery and had their own pathologists review them, and took all that info to their tumor board. I learned I was Stage 1A, which was a huge surprise to me, and greatly improved my mental wellbeing. The tumor board recommended "cuff & chemo": 5 treatments vaginal cuff brachytherapy and then 6 rounds of carbo/taxol chemo. (Note the difference in radiation from my own GYN-oncologist.) For anyone reading this, if you have a rare diagnosis, please consider a 2nd opinion from a research institution like Mayo. That consultation changed my outlook from one of reluctant acceptance to empowered self-advocacy.

I subsequently met with my local radiation oncologist, who agreed with the MDA recommendation for brachytherapy (not pelvic radiation). I have already had 2 rounds of chemo, so the radiation will come after my 3rd chemo. My chemo response was fairly standard. The first two days jazzed up on steroids, nausea well-controlled, lethargic days 3-5, and felt pretty normal after the 6th day. I find that my heart rate increases during exercise, much more so than in my pre-chemo workouts, so I have to moderate workouts accordingly.

One final note about the CT scan mentioned above, my GYN-oncologist ordered follow-up tests to look at the two lesions: an MRI for my liver and a bone scan my sacrum. I had both tests last week, and I've seen the reports in my patient portal, and will review with my GYN-oncologist this week. The bone scan report was clean. The MRI report "cannot exclude metastasis" in my liver. MDA had already told me a metastasis is highly unlikely, and I hope subsequent tests bear this out. This is one more instance of the roller-coaster ride of a cancer diagnosis. Overall, I know I am very fortunate that my cancer was caught early, but these uncertainties can be a bit unnerving.

@lhtalmadge. Thank you so very much for sharing your journey. Yes, you are very fortunate your cancer was caught early. You have yourself to thank for that as you sought out medical help when you noticed the blood in the toilet. MD Anderson, as you know, is a top cancer research center in the world. How fortunate that you had the connection and got in there so quickly. It's evident that your cancer care team at MD Anderson was very conscientious and thorough and kept you well informed. I had that experience at Mayo Clinic and I'm so glad that is where I went. In fact, there was no option in the rural area where I live for gynecological oncology so when my gynecologist offered U of Michigan or Mayo Clinic I jumped at Mayo Clinic.

How are you feeling? Yes, I know only too well the uncertainties that come with cancer surveillance.

I am so glad you were able to find my post and share your journey. Even though surveillance comes with uncertainties, I hope finding that you are receiving the same treatment I received, which has been successful brings you some comfort. As I posted, I completed my treatments on December 17, 2019 and to date, there has been no re-occurrence. My CA125 was 13 immediately after treatment and was 9 at my last surveillance. My next scans are scheduled for Oct.19th. Thank you for inquiring about my lymphoma. To date I have not had to receive treatment for it, although I have had a few biopsies on enlarged nodes. I hope you are feeling well and continue do well. Please keep me informed of your progress and feel free to reach out if you have any questions about my journey.

Hello! Does anyone had the lumbar pain when diagnosis with endometrial cancer? I have been this mild lumbar pain that doesnt go away since november, my biospy was taken November the result just came by January and thats it is endometrial cancer. Now i am wondering if this lumbar pain i've been having is related to my cancer, if so will that means that it has spread? I wish its not. Thanks to all on this group.

I would try not to imagine that the cancer has already spread to your spine! This kind of cancer grows slowly. I am shocked that you didn't get your biopsy results for 2 months! I am sure the anxiety of waiting so long has weighed on you terribly. Let your doctors know about your lumbar pain. It is most likely an unrelated condition. God bless.

I felt so many blessings which came from my cancer as well. I hope that I never stop feeling grateful and blessed.

I also had uterus cancer hysterectomy and years later got vaginal cuff cancer, radiation and brachytherapy. Can you explain to me the different technique used when doing an examination for a Pap smear around the vaginal cuff. I have never heard of this so it is very interesting to me. Thank you.

Between the time my biopsy revealed endometrial cancer on November 15th and my CAT scan on November 23rd that revealed no metastasis I imagined every twinge both past and present to be cancer. Is it in my bone? Is it in my blood? Is it in my belly ? Is it in my head ? Every mole became cancer in my mind. I am sorry that your wait has been so much longer than mine. I think they put me on a fast track since I had had symptoms for over a year and a biopsy in September 2021 had missed the cancer.
I too have back pain issues but I think mine is attributed to excess weight and lack of exercise. I was further blessed by my cancer not having spread to lymph nodes either. Surgery removed it all in December 7th. Take it one day at a time… in prayer.

I also had spotting in December and doctor found thickening in my uterus and polyp on my ovary. The stage is serous and hysterectomy slated for March 9 .
It’s scary waiting but they tell me it takes that long to do all tests. I’m 91 and have been exceptionally healthy til.. this, exception controlled heart issues I’m feel very I’ll now with no advice for help from all my drs. If it’s the worst news and I have 3/5 years ( quoted on line) I’ll be ok if I feel ok. Any news appreciated to help me through.