Posted by Brighty on Jul 22, 2020 12:18 am
Oothoon13 is another new member here. I hope you will be able to connect and support one another. We also have Kathy49
hope you will make some connections and find out some more information from these ladies who have been there.
Posted by Lacey_adminCCS on Jul 22, 2020 11:45 am
It is understandable that you're in shock. I'm glad you are reaching out to others who understand.We have a great booklet: Coping When You Have Cancer there is a section that talks about shock, fear, and uncertainty. I hope you check it out and find it helpful.
Do you know what happens next? Are you being referred to an Oncologist?
I have moved your post to the uterine cancer discussion to help you connect with others.
Wishing you well,
Posted by Natalieca on Jul 22, 2020 12:12 pm
Posted by Oothoon13 on Jul 22, 2020 6:31 pm
I’m Oothoon13 (also known as Pat). I’m 30 years older than you but, like you, I feel as if I’ve been hit with a plank or fallen off a cliff (that’s the title of my post on here). I was diagnosed on July 3, so also this month. Type 1, Grade 2. Getting a CT scan next Thursday to see if it’s spread.
if you do some research on Endometrial Cancer, you’ll find it’s an easy cancer to get rid of completely, with a 95% five-year survival rate after hysterectomy if it hasn’t spread beyond the uterus. Not a problem for me but a problem for you and your fiancé if you want children. If you opt for hysterectomy, optimally you want it quite soon. Between 2-8 weeks after diagnosis. I’m sure you’ll be booked quickly. More than 75% of simple EC survivors are still alive and cancer-free 13 years later in one study.
if you read my post, you’ll see I’ve been forced to wait 8 months since the bleeding started, in large part because of a completely incompetent OBGYN with whom I had a (failed) D&C at the end of January. It may be 10 months before I finally get surgery and, even though Grade 2 is a fairly slow-moving cancer, that looks less good for me.
Take a big breath. This is very easy to cure, as your oncologist will tell you. Good luck.
Posted by Cedar on Jul 22, 2020 10:44 pm
Let us know how things are going, and don't hesitate to ask questions.
Posted by Lacey_adminCCS on Jul 23, 2020 8:31 am
Check with your treatment centre to see if your fiance can attend. Some centres are changing their rules. If he can't attend you could ask your fiance to help you write out some questions to ask and you could ask the Oncologist if you could record the info given to go over later. I know it's not the same, I'm sorry. I find it helpful to focus on what I can control in the situation when in these situations. I hope this helps you too.
Here are some great resources to help you prepare some questions:
Questions to Ask When You Have Cancer
You are also welcome to call our Cancer Information Helpline. Where you can speak to an Information Specialist for info and support. They are a big help! Its free and confidential 1-888-939-3333. Plus you always have us to talk to 😊
Looking forward to hearing you switching back to Wedding plan ASAP.
P.s. When you reply to someone you can tag them by typing the @ symbol and their username. This will notify them of your message it's a great way to stay in touch.
Posted by Kathy49 on Jul 23, 2020 10:38 am
Posted by Natalieca on Jul 23, 2020 12:10 pm
ive pretty much accepted that I won’t be able to have kids.. they did an HSG during my D and C and I had no activity in my tubes.. guessing complete blockage, but what do I know.. with all of the bleeding and cramping I’ve had over the last year, I look forward to getting everything out (which I assume will make that all go away)
Thank you for giving me some hopeful numbers.. I tend to go to the dark side 😕
Posted by Natalieca on Jul 23, 2020 12:22 pm
Posted by Oothoon13 on Jul 23, 2020 12:56 pm
So I went to a hospital Urgent Care 4 days after the first spotting in early Dec 2019 when the bleeding became moderate with lots of endometrial lining being sloughed off. I met a young male doctor who was very dismissive of me. And my three-page bloodwork was good, making him even less likely to take my complaint seriously. The OBGYN he sent me to within the next two weeks was brusque and inattentive. Rather than interview me about my symptoms (which were very much not those commensurate with thinning uterus), she shushed me while she read his notes. In the office visit, though she got a PAP smear (clear), she was unable to get a biopsy, so she scheduled me for a D&C for Jan 31, 2020.
Apparently my not having kids meant my cervix and uterus were quite small and shrunken. During the follow-up, she said she was unable to get a large enough sample of tissue for the lab to say anything conclusive. This is the “failed” part: essentially she had one important thing to do—and she didn’t do it. I’m unconscious, she technically has all the time she wants (although there’s some evidence she wanted to get out of there early), she’s been in practice for at least 27 years—how did she not do this??! (And two days ago she tried to gaslight me by saying she never got in at all—no hysteroscopy, no tissue sample at all, not one that was too small.)
When I asked in the follow-up, what do we do now then? Should we remove the uterus and biopsy it then?, her first reaction was anger: “I didn’t see anything and the lab didn’t find anything in the sample it had. Why can’t you be satisfied with that?” I finally made her listen to my symptoms and told her my mother died of ovarian cancer in her 80’s. She still was not attached to my case but she was taken aback. As she got up, she said, “I’ll get you a surgeon.” No one called. Lockdown happened 10 days later. I think she was too embarrassed at her failed D&C to turn my case over to someone else.
I was forced to call her office again in late May when the bleeding became quite severe and frequent. This time she got me a gynaecological oncological surgeon right away. My diagnosis was July 3rd. No staging yet. No surgery scheduled. So I’m at almost 8 months untreated—though I tried to get help immediately.
I’m thinking you’ll do much better. This ‘ride’ has been plagued with bad luck for me.
Posted by Kathy49 on Jul 23, 2020 1:21 pm
Posted by Patricia319 on Jul 24, 2020 4:33 am
Posted by a3a on Jul 24, 2020 11:23 pm
Posted by Jlo on Jul 25, 2020 4:39 pm
Welcome to the site. I am a Stage 4 Serous Endometrial cancer survivor and it's been 2-3/4 years since the end of my treatment. I was diagnosed at 67 and am doing well now. It is a shock at any age. You have been given lots of good tips so I won't repeat them, but I did sign up with Cancer Chat and did their Online class on the Fear of Recurrence. I found it most helpful to redirect my thoughts. Staying positive is most important. Some days are better than others, but I just focus on today. I learned Mindful Meditation and practice it still regularly. It has really helped me in my daily life. There are many free sites on the Internet. One I use is Power Nap by Andrew Johanssen I took advantage of the programs offered at my cancer centre as well.
best wishes and I hope your oncologist appointment goes well
i hope your oncologist appointment goes well.
Posted by Natalieca on Jul 27, 2020 10:40 pm
Posted by Lacey_adminCCS on Jul 28, 2020 9:39 am
Thanks for the update! Good to have some information and know what you're dealing with.
Getting it all is very important! I'm glad you have made a choice about what is best for you. You have shown so much strength. You will get through this.
Here are is a link to threads that mention hysterectomy: https://cancerconnection.ca/search?query=hysterectomy. Feel free to post any surgery questions you have, we are for you!
P.s. Did you talk to Mom?
Posted by Jlo on Jul 28, 2020 3:13 pm
one of my friends had an open surgery and was told only to lift a tea cup for the first 6 weeks. This is considered major surgery. Hopefully your fiance/family can help you. Walking around your home inside is good. After tne first week, my husband put my shoes on (couldn't bend over yet) and we walked outside. I did some laps around my yard to begin with and then slowly started walking down the street and I went a little further each day. I am glad I did this as I went for an MRI before my 6 weeks recovery was up and it was a long walk in the hospital.
my surgery was laproscopic but still had a 2 night stay. Best of luck with your surgery.
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