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I was diagnosed with uterine serous carcinoma in March 2020

I was diagnosed with uterine serous carcinoma in March 2020

Posted by Jan5 on Dec 4, 2020 10:59 pm

Hi, I am new to this forum. I was diagnosed with uterine serous carcinoma in March 2020. Stage 1-A. I chose observation vs chemo and radiation. Is there anyone who is just being followed rather than receiving adjuvant treatment? 

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Whitelilies on Dec 5, 2020 7:11 pm

Jan5‍ Hello and welcome to our caring site....thank you for sharing with us and trusting us.
I will tag a few others, and hope they will share their experiences as well...
Cedar‍ 
Natalieca‍ 
Oothoon13‍ 
Kathy49‍ 
Tilly59‍ 
Thank you ladies for your support, of a new member.

Warmly
Whitelilies

Lillian

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Cynthia Mac on Dec 6, 2020 7:18 am

Hi, Jan5‍ , I’m glad that you’ve found this site, and hope we can offer you the support you seek.

There is a section under “discussions” for “Cancer Types” and there is one for “Uterine”.  There might be some information there that you could find, so I provide the link to this section below:
https://cancerconnection.ca/discussions/viewcategory/76

You will probably find some of the ladies Whitelilies‍ Tagged in her post there, too, and if you want to reach out to them, you can magically do so by typing the @ symbol immediately before their name (like this: @Cynthia) After a few keystrokes, a drop down will appear of all the people who have names starting like that and you can pick the one you want.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Kathy49 on Dec 6, 2020 11:26 am

Hi Jan5,  I had symptoms of uterine cancer all through 2019 but everyone ignored it.  Then in the night of Feb. 13 2020 I had a huge discharge and most of the bed was wet.  What was holding in all that discharge, I don't know.  Anyway, I was finally able to get an ultrasound at the end of March 2020 and a biopsy in April 2020.  The biopsy confirmed the cancer and I had to meet with oncologists etc.  The date was set for a complete hysterectomy done laparoscopically on July 8 2020.  Unfortunately on June 24 I was taken by ambulance to the hospital and they confirmed pulmonary embolisms in my lungs and clots in my right leg.  So I was put on blood thinners and the July 8 surgery was postponed for 3 months.  This was a stressful 3 months because I was having pain and discharge.  Finally my surgery was done on September 23 2020 in Ottawa by the laparoscopic method.  I had no complications and came home on September 25 because I am alone and have no one to help, no neighbours, no family that will help etc.  The oncologist called me in mid-October and said my cancer was Stage 1-A and it was caught early and had not spread.  He said a treatment doctor would be phoning me soon.  I had another trip to the hospital slightly related to the uterine cancer - on Oct. 10 I fainted and came to on the bathroom floor.  After this I had 5 days of terrible dizziness so I had to take the ambulance back to the hospital again.  They did a CT scan to check for brain tumour or stroke, and I had neither.  The CT scan technician unfortunately dropped me off the able and that ruined my back for about 3 weeks of excrutiating pain. On October 26 the cancer treatment doctor called and said that the biggest area of my cancer was near the cervix and there is a smallish chance that if the cancer came back, it would get hold there.  He says I do not need chemotherapy but he recommended something called BRACHYtherapy.  So soon I will have to take the patient transport to Ottawa again for that.  What it involves is that they put a thing like a tampon in the vagina and it has radiation "whatevers" on the end of it.  That says inside the patient for about 20 minutes.  An X-ray is taken before the procedure.  The machine works pretty much automatically, and withdraws the radiation thing after about 20 minutes.  They sent me information sheets.  There are few small effects.  He said I didn't have to have the brachytherapy if I didn't want to but he felt it would be a good idea in case the cancer came back in that area.  I've already had breast cancer in Dec. 2018.  So this therapy is for 3 weeks, did I mention that?  So I go back and forth to Ottawa for 3 weeks.  They don't have to be weeks right after each other because I was worried that Christmas would interfere with one or two weeks of the therapy.  So now I'm waiting to hear what days this radiation therapy will be scheduled on.  I'll just mention here, also, that I requested to be registered for the Going Home Program because I am all alone and I am a disabled senior.  The Going Home Program provides one week of meals on wheels, two visits by a PSW, and some visits from nurses to check the wound etc.  As I found out, the silly thing about the PSW visits is that a patient can only get them in the two weeks following the surgery BUT the hospital puts all patients in quarantine (at home) for two weeks.  So the PSW visits would be within the two week quarantine period and so the PSW is not allowed to come.  How silly!

Oh, I didn't know I could make paragraphs here.  Anyway, that is my story of having treatment after surgery which is (1) following my condition and the (2) treatment of the brachytherapy.

I hope you get well soon, and I'm sending my best wishes.

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Cedar on Dec 6, 2020 11:44 am

Jan5‍ Every person and every cancer is different, so you need to trust your instincts and make the decision that's right for you. My understanding is that the serous form of uterine cancer is more aggressive than what I had, which was Grade 1, stage 1b. The gynecologist who did my biopsy recommended surgery as soon as possible to do a complete hysterectomy, which happened within 2 weeks of diagnosis. Very speedy, hardly enough time to wrap my head around having cancer. This was exactly a year ago. He reassured me the cancer was gone, and I didn't need further intervention, but when the cancer clinic got the biopsy results, they recommended radiation, which I had. You didn't mention your age, which makes a difference, I think, in the surgery decision. I was 64, with 2 healthy adult kids and 4 grandkids,so surgery was a no-brainer! If my uterus was trying to kill me, I didn't need it anymore. I recovered quickly from the surgery, and am back working and walking at least 10 km a day. The radiation left a few more side effects, mostly some digestive issues, but nothing that stops me from enjoying life.

I'm not sure if sharing my experience helps you in your decision, but maybe there are others who can weigh in as well.  Wishing you well.

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Boby1511 on Dec 7, 2020 3:04 am

Jan5‍ 
Hi there.
I have uterine adenosarcoma with sacromatous overgrowth. 😉 It's a long name. Its a soft tissue sarcoma that originated in the uterus, so not exactly uterine cancer.
They took everything out tubes, ovaries, uterus, cervix, parts of the pooper, nips of other things.
I had a high grade large tumor. I am stage 4 with a recurrence and now terminal.
Have they discussed non-invasive surgery options?
Surgery was not an option for me. I was near death when they did emergency surgery.
It was quite painful and surgery was quite painful. But I have recovered (mostly) from surgery.
Toronto has non-invasive surgery options if caught early. There is a wait time to get in.
Perhaps get a second opinion?

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Boby1511 on Dec 7, 2020 3:13 am

Kathy49‍ 
Hi there,
Did they mention a covid test? I have had several now. Every time in hospital they seem to give me another.
Maybe the home nurse care is exempt for the 2 weeks? Or if they are then maybe request a covid test?
Wishing you well on your treatments.

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Kathy49 on Dec 7, 2020 1:27 pm

Thanks for your reply Boby1511.  I'm not sure why you suggest a covid test for my present issue of dealing with uterine cancer??  I have had a total of three covid tests, my first two were so that I could assure the LHIN nurses that I didn't have it, and the last covid test that I had was because I had a bad cough and pains.  They were all negative.  My covid tests were done by the Paramedics.  My understanding is that you cannot get a covid test in the hospital but I don't know if that is true.  Thanks for your kind wishes.

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Cmfrank on Dec 8, 2020 1:17 pm

Hi Jan5‍ I was diagnosed with serous Uterine cancer 1A In November 2018 and had surgery in January 2019 when I was 62. I did not receive any subsequent  treatment and am being being observed only. So far I’m doing well! Cheryl 

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Boby1511 on Dec 9, 2020 10:59 pm

Kathy49‍ 
hi there, sorry to confuse.
Meant a covid test to help with the LHIN scheduling. You mentioned the quarantine after surgery.
You can get a covid test in hospital. I have had maybe 11 now. Every time I have had to go back in they have given me another.
Sometimes twice as they had the student nurse do one and they decided it wasn't far enough up the nose!
So I got discharged from one hospital to get admitted to another hospital. I got a covid test before leaving hospital A, results back, all negative, I get to hospital B (by Orange plane), and hospital B quarantines me till I get another covid test there! Was like 3 hours after hospital A! And anyone entering my room had to get in full dress while they quarantined me! Complete waste of resources given I already tested negative hours before!
Orange is air ambulance, they don't let you on the plane till your covid results are back same day. Complete waste of resources.
Wishing you well.

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Jeg on Dec 15, 2020 10:49 am

Hi there!  I'm brand new here - I am waiting on a hysterectomy, with a first appt with surgeon scheduled for Jan 27th.  This is due to biopsy showing complex atypical hyperplasia.  My post-menopause bleeding started late August and went on for 8 weeks.   
This whole process and waiting time feels unbearable and with covid and hospitals near breaking point WHO knows when I might get the surgury.   And then what will surgeon find?

I am terrified, have not told anyone except my husband (have 3 sons living at home) and I'm just wondering how to manage the anxiety, and what those with experience think of the timeframes?
Thanks

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Brighty on Dec 15, 2020 11:59 am

Jeg‍ I can only imagine  how terrified  you must be not you are no longer  alone.  Wait times can vary depending  on a number  of factors.     I can point you in the direction of the discussions.    Under 'forums' and cancer types ' you will be able to find your cancer type and join in with others who have the same cancer  type.    They might be able to better guide you on the time lines and how they coped while waiting.    People do all kinds of things to distract themselves....walking,running,meditation,art ,various hobbies, treats,movies.   
you might find it helpful  to talk with the oncology  social  worker  about your fears and feelings.  as well,be in regular  contact  with your health  care team.  Thry may be able to give you something  to combat the anxiety.    I found oncology social worker so helpful  as a caregiver.  When you're  ready to tell others ,embrace the support and love they will show you..     only tell when and if you are ready.      People  can surprise  you with how much love and support they will show.  You showed courage by posting  and reaching out and I'm here to tell you you dont have to go through  this alone.   We will be here with you, all the way...and any more questions please dont hesitate  to ask or call the info line at 1888 939 3333.  Welcome!!!!
Help is out there. All you have to do is reach out.

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Brighty on Dec 15, 2020 12:35 pm

Jeg‍  I'd also like to connect you to Jan5‍  Kathy49‍  and Tilly59‍ 
Help is out there. All you have to do is reach out.

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Tilly59 on Dec 15, 2020 1:45 pm

Hello:

I had uterine cancer stage 4b.  I was first diagnosed in December 2017.  I had a full hysterectomy in January 2018, followed by 6 chemo and 25 radiation treatments.  I should mention that I will be 60 years old this month, and I am overweight to a certain degree.  I also have a number of additional medical conditions, including type 2 diabetes, asthma, and psoriasis.  So my prognosis is not good.  But I am going into my fourth year  without the cancer being active.  My recommendation is that you do what you think is best for you.  And always press the doctors to answer your questions.  Please take good care of yourself!!

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by Jeg on Dec 15, 2020 2:03 pm

Thank you Tilly59!   Just having this forum to post qs and get general moral support I think will be an amazing help!

I hope 2021 keeps you in the clear,
J.

Re: I was diagnosed with uterine serous carcinoma in March 2020

Posted by a3a on Dec 18, 2020 11:12 pm

hi Jeg,

I saw your post, and wanted to pop in and say hello. 

I had a aggressive form of uterine carcinoma diagnosed last December. Fortunately it hadn't spread, so I had a radical hysterectomy followed by vaginal vault radiation.  I was apprehensive initially about the radiation, but decided to put my trust in the specialists, as they know so much about treating cancer.  It's almost a year later and I'm feeling very well.  We have a new puppy, Barney, and are enjoying his antics, and appreciating each day.

Be good to yourself during this difficult time--I found napping was very beneficial. I found uplifting or funny books a source of comfort on days when I didn't feel like getting dressed right after the surgery. Word searches helped pass the time too.
Wishing you all the best, Ginny