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From slow to very fast. What to do ?
Hello. I had a hysteroscopy done on 9/28, was comfirmed on 10/7 it was a “ Anaplastic, primitive malignant tumor” with no real identification. Only 3 options presented, each scarier than the others: uterine carcinosarcoma or a rare form of primary uterine sarcoma or a metastatic tumor to the uterus.
I got scheduled for an oncology consultation for 11/4.
I decided to contact the Mayo clinic, as an impulsion, for a second opinion.
I have an evaluation scheduled on 10/27. Of course I asked all my health records to be communicated to Mayo.
Last Friday a nurse called me asking me if i was open to having a Hysterectomy the friday 10/28 as the doctor had an opening.
I already have pre-op tests scheduled for after my evaluation appointment.
I dont know what to think. I have not yet seen or talked to the doctor, i dont know what kind of cancer i have, i have had only 1 biopsy done. And yet, I am almost scheduled for a radical hysterectomy.
Of course, I want to get rid of the cancer as soon as possible and I have been told the hysterectomy is probably the first step.
But I wont lie. I am scared to death and questionning everything.
Sorry to unload so much on strangers. In a way it helps me to put my fears into words.
Thank you for reading.
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Yes, you have many options! There is an exceptional website, ncbi.nlm.nih.gov/pmc (National Library of Medicine and National Institute of Health) that has thousands of medical articles and research studies written by doctors all over the world. Be sure the page that pulls up shows PMC PubMed Central. You may benefit having a friend who is a nurse who can explain some of the medical terminology for you. I found several research study articles regarding the effectiveness of the two chemo therapy drugs that were recommended to me for my metastatic endometrial cancer. At the end of these articles it said it had been found that these two drugs were NOT effective for endometrial cancer. I chose not to have chemo. I was told by an oncologist that I would die in a year if I did not have chemo. I've been living a wonderful life for six years now! I skipped having nausea, vomiting and hair loss from chemo, and only take pain medication twice a day! I hope you find some articles at PMC that will help you make decisions about your specific chemo treatment!
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4 ReactionsAwesome @paulass ! What an inspiration! Yes, doctors give their best guess for life expectancy, but I believe God is totally in control. Thrilled that you are well and your quality of life is good!
Hello and thank you for your post.
May I ask what 2 agents were recommended? I am currently receiving Carboplatin and paclitaxel. Are you recievingother complimentary treatments?
All the best,
@paulass. Thank the for the reference to the National Library of Medicine.
Cancers are not alike so what is recommended by the doctors will be based on the type of uterine cancer and the stage. Everyone needs to make their own decision on whether or not they will pursue the additional treatment such as chemotherapy based on the available information. The survival rates for cancer again depends on the kind of cancer and stage. For instance, there are different types of endometrial cancer and some are more aggressive cancers than others.
-- https://www.cancer.org/cancer/endometrial-cancer/about/what-is-endometrial-cancer.html
What kind of cancer were you diagnosed with? And what was the stage?
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1 ReactionHello. It has been a long time since my post where I was scared as hell. All went very fast. All tests were done on 10/27, CT scan revealed left lymphnodes positive for cancer, consistent with metastasis.
So 10/28 morning, I had a standard full hysteroctomy, bilteral lymphedectomy (even if right lymphnodes were negative) as well as an explorative laparoscopy. All suspect visible tissue was removed, i am classified as a Stage 3c grade 3 rare sarcoma as per Hysterectomy pathology results.
I already have appointments with the Medical oncologist and a radiologist oncologist set up at the end of the month. With Post op mid December.
But due to the type of cancer, my case is presented to a Tumour board this Friday to come up with recommendations on the best next steps.
It is a real emotional roller coaster and I cannot really blame the hormones or a long history of anxiety and depression 🥴.
I recover physically very well (i think) from the surgery. @pugpeople describes very well the recovery process and progress. My only side effect is an occasional funny numb feeling at my left ankle. After talking with the doctor it is probably a pinched or stretched nerve during the surgery and it will go back to normal overtime. I go down and up stairs, carry (light) grocery bags, my cat (only 8 pounds little thing) without problems.
Next week, I will be able to get out to take care of other matters like flu shot, covid booster, dentist… mundane things, right ? 🙂…
My main fear is infections or blood clots so i am very careful with daily cleanup and with exercising my legs.
I dont know yet what the care plan will be but I am 59. At this moment i willing to do whatever it takes to get rid of this cancer.
Maybe i will change my mind later, as/if treatments get too hard on me or if/when recurrences overwhelm me.
I have read other recent posts and respect everyone’s choices. Our life experience, our philosophy on life, our gut feeling have often as much importance as the doctors recommendations.
All that said, I still have many questions 😅… i will keep them for the next days.
But I hope I can contribute too, to help others.
One thing i want to mention that may be controversial but it was necessary for my own sanity. When I was diagnosed and got my first biopsy report, my first reaction was to read and absorbe everything i could find on the internet, then on the Mayo Clinic web site, then on Connect.
It actually gave me a panic attack. Because of course, we tend to notice and remember the worst cases, the worst prognosis, the most heart breaking stories.
This is why I had decided to stay away from Connect until i could gather myself up.
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4 ReactionsSo glad the surgery went well! Take one day at a time. Do the things you enjoy, and do what you need to stay positive and stress free even if it means a break from this forum. See what the doctors say and ask questions so you are fully informed. I saw a medical doctor do a TED talk and he said these are questions patients should consider asking:
What are the risks of the treatment?
Are there other options?
What happens if I don’t do anything?
Then you will have all the info you need. Please try to stay relaxed during this journey. My doctors said my positive outlook, praying, etc helped/helps with healing. I’ve slept extremely well from the time I was diagnosed til today, enjoy life, pray, relax but most importantly I try to take one day at a time. My post op is early December and then every 3 months I will see my oncologist because I declined chemo/radiation (stage 1a grade 3). My oncologist told me other patients who had the same diagnosis also declined chemo/radiation and are doing well. I know the symptoms to watch for if cancer goes to my lung, stomach or vagina. And I will be seeing the doctor ever 3 months…she follows patients for 10 years. All of us must make the best decisions for our lives and personal journeys. I know you will make the best decision for you and do well. Remember we are all cancer survivors and are strong. Continue to heal, all the best!
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2 Reactions@mary64300 I'm so happy to hear your surgery went well and that you have your next appointments all set up. In my experience the physical recovery after the surgery is the easier part. It's the emotional roller coaster that you mention and all the decisions you need to make that is harder.
Since your case is being presented and discussed at a Mayo tumor board you will be getting recommendations from the best minds who have years of clinical and scientific experience. Like you I respect that people will make their own choices. I can hope that their choices will also be based on the best medical information possible. I agree with you that a person must make their own decisions on how to go forward based on their own belief system, values, and their life philosophy.
Like you I read my pathology report over and over and looked up information from valid and reliable sources such as Mayo Clinic, Johns Hopkins, Cleveland Clinic and NIH. And yes, my mind went to the negative and worst outcome possible. I had to continually remind myself that what if I'm among those with the best possible outcome? You know yourself and what your limits are. You also have the means to cope with a frightening situation as you did when you chose to stay away from Connect if and when you were ready to return.
Your next appointments are scheduled for the end of November? Do you have to travel and stay over night near Mayo to go to your appointments?
Hi mary64300, did you receive further treatment per your oncologists recommendations?
I also have Stage3-4 grade 3Uterine papillary serous carcinoma. I'm scheduled for chemo on carboplatin/taxol Friday the 13th. Haha 1/13.
Wondered if you are already doi g chemo and maybe we can compare notes.
Thanks, Maria
Hello terradean,
How did your chemo sessions go? Interested in the drug therapy you were on and if you would share. Traveling on the same journey.
Thanks,
Maria
Everybody has different experiences with chemo. I am in remission 2 years out from 6 applications of carboplatin and taxol. (Stage 2B) I didn't have too much trouble, But I just relaxed into it and didn't push myself lol.
BUT an uncommon side effect of platinum treatment they don't mention much is possible damage to your hearing. It seems to be more likely if you already have imperfect hearing. (Me, but little enough that I didn't have hearing aids.) And it's supposed to be more likely with cisplatin, But it happened to me with Carbo. I didn't have any idea it might be a side effect; just thought my ears were continually plugged up with gunk. (They felt "full") So I never mentioned it to the oncologist. Found out the truth after chemotherapy was all over.
I don't know if they would have changed anything in the protocol even if they had known, but they might have. (They changed from taxol to another variant (or was it the other way around, the details are fading) when I began to show signs of neuropathy.)
Good luck to you! Try to keep moving, even if it's just gently walking. I didn't for a while and felt much better once I started just walking around the house for 10-15+ minutes at a time. (I was a couch potato before also.)