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Uterine Cancer at 37

Uterine Cancer at 37

Posted by Natalieca on Jul 22, 2020 12:02 am

Hello everyone, my name is Natalie and I just found out today that I have grade two Uterine Cancer.. I’m super upset about it (understandably) and I would love to hear from any other UC patients.. I’m lost.

Re: Uterine Cancer at 37

Posted by Brighty on Jul 22, 2020 12:18 am

Natalieca‍ welcome.   So sorry you find yourself  here but you are in good hands.   I'm going to introduce  to you to a few ladies to connect with  .
Oothoon13‍  is another new member here.  I hope you will be able to connect  and support one another.     We also have Kathy49‍ 
Tilly59‍ 
Cedar‍ 
a3a‍ 
Patricia319‍ 
Lynda D‍ 
hope you will make some connections and find out some more information from these ladies who have been there.        
 
Help is out there. All you have to do is reach out.

Re: Uterine Cancer at 37

Posted by Natalieca on Jul 22, 2020 11:38 am

Thank you for your kind words.. I’m still in the shock of it 😕

Re: Uterine Cancer at 37

Posted by Lacey_adminCCS on Jul 22, 2020 11:45 am

Welcome Natalieca‍ 

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,
Lacey

Re: Uterine Cancer at 37

Posted by Natalieca on Jul 22, 2020 12:12 pm

Thank you Lacey ❤️ I have an appointment on Monday with the oncologist.. as if that isn’t enough to put me on edge, I’m pretty sure with that Covid and everything I’m not going to be allowed anyone to go with me :(  My fiancé feels helpless, he just sees me crying and I’ve yet to tell my mom (probably the worst part of this whole thing).. I’m just overwhelmed and feel alone.. I’m supposed to be planning my wedding, not this 😢

Re: Uterine Cancer at 37

Posted by Oothoon13 on Jul 22, 2020 6:31 pm

Hi, Natalie—
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.

Re: Uterine Cancer at 37

Posted by Cedar on Jul 22, 2020 10:44 pm

Natalieca‍ & Oothoon13‍ Welcome to the club that nobody wants to be in. You will find a helpful and supportive community here. I can relate to your shock, Natalie, I had no risk factors other than being a woman so being diagnosed with uterine cancer threw me for a loop.  In the past, I've been able to look on the bright side, and now that I believe my cancer is gone after a complete hysterectomy in December 2019 and radiation in March 2020, I am grateful for the quick referral by my local nurse practitioner (I live in a small prairie town) to a gynecologist who got me into surgery very soon after the pathology report came back, and that this was pre-Covid so I was able to have the support of my family. In spite of the logical side of me reassuring me all would be well, there were times when the dark side threatened to overwhelm me. I found support by doing research, asking questions on this site, doing yoga and some meditation, and keeping active, mostly walking. For miles and miles. Oothoon13‍ I'm so sorry to hear of the incompetence you've experienced, as it sounds like your symptoms manifested about the same time as mine. I hope your care is timely going forward, because as you say, this is a highly treatable cancer. My surgery & radiation were Pre-Covid so I was able to have a family member attend my appointments with the oncologist, but I still found it helpful to get a printed copy of the oncologists notes. You can request these at the reception desk after the appointment, but sometimes you have to wait. You can then refer to them at home and discuss it with family members without relying solely on memory. I also got copies of the pathology reports, both after the biopsy and after surgery, as well as copies of all the gynecologists notes, including a detailed transcript of the surgery procedure. One of my friends recorded her appointments on her phone when she had to attend alone.

Let us know how things are going, and don't hesitate to ask questions.
 

Re: Uterine Cancer at 37

Posted by Natalieca on Jul 22, 2020 11:59 pm

Thank you for your comment! Glad to hear everything is going well 🙏🏼 I have a question, if they did the hysterectomy successfully, why the radiation? What was that like? Thanks for the suggestions, went for a walk tonight 👍

Re: Uterine Cancer at 37

Posted by Lacey_adminCCS on Jul 23, 2020 8:31 am

Natalieca‍ - You are most welcome 😊

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
Uterine 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.

Lacey

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.



 

Re: Uterine Cancer at 37

Posted by Kathy49 on Jul 23, 2020 10:38 am

Thanks @Brighty for mentioning me in this thread.  @Natalieca I am 68, alone, disabled and biopsies done in April 2020 showed that I have unterine cancer.  I was scheduled for surgery in Ottawa on July 8 but unfortunately on June 25 I went by ambulance to the hospital, stayed 2 days, with terrible pain in my heart area and I could barely talk.  It turned out to be pulmonary embolism (caused by the Megestrol the oncologist had prescribed for my uterine cancer) so they put me on blood thinners and morphine.  I'm feeling a lot better now but my cancer surgery is postponed to mid or late September 2020.  I'm sure at your age, your diagnosis was a shock.  You can get a lot of information and support at this web site.

Re: Uterine Cancer at 37

Posted by Natalieca on Jul 23, 2020 12:10 pm

Oothoon13‍ Thank you for replying.. just curious, what happened with your D and C? I just had one two weeks ago.. how was it a failed procedure?

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 😕

Re: Uterine Cancer at 37

Posted by Natalieca on Jul 23, 2020 12:22 pm

Kathy49‍ Thank you for replying.. you brought up something I hadn’t even thought about.. the medications and what they can do to you (chemo and radiation you always hear about, but I didn’t know there were others too 😕) as you can tell, I don’t know much of anything yet..I’m kinda scared to know

Re: Uterine Cancer at 37

Posted by Oothoon13 on Jul 23, 2020 12:56 pm

Natalieca‍ My GP retired in Sept ‘17 and, though I interviewed a few, I’ve just been using walk-ins since. No big health issues—till this.

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.
 

Re: Uterine Cancer at 37

Posted by Kathy49 on Jul 23, 2020 1:21 pm

Hi Natalieca‍  I had breast cancer with mastectomy in December 2018 and since then I have been on Tamoxifen.  I have had no problems due to the Tamoxifen.  Then April 2020 the gynocological oncologist took some biopsies from inside my uterus (hurt like heck) and confirmed that I have uterine endometrial cancer.  In order to slow down its growth, she prescribed Megestrol.  No one mentioned that it could cause blood clots.  When I had to go by ambulance to the hospital on June 25, and was in Emergency for 2 days, the doctor said that the Megestrol can cause clots.  So I was quite surprised by that because I didn't think I would be given pills that would cause a serious medical condition.  Anyway, the doctors stopped the Megestrol right away and put me on blood thinners and morphine.  Once those medications started to work and I felt a lot better, I was told to resume the Megestrol again.  

Re: Uterine Cancer at 37

Posted by Patricia319 on Jul 24, 2020 4:33 am

I was diagnosed with Uterine cancer at 47. Initially indicated stage 1, grade 1- had full hysterectomy laparoscopically a week later. The results of the pathology showed grade 2 so I was referred to Sunnybrook where they did more analysis and determined it was indeed grade 1 so no further treatment was required. I go for follow ups every 6 months, it has now been  about a year and a half. I felt fine soon after the hysterectomy, the biggest stress is fear of recurrence or a different type of cancer but as someone else mentioned, this is a cancer with great odds when caught early and it sounds like yours was. Hang in there and don’t worry about grading until after the surgery when you will get the most accurate idea of what you’re dealing with. 

Re: Uterine Cancer at 37

Posted by a3a on Jul 24, 2020 11:23 pm

Hi Natalieca, sorry to hear you have been diagnosed with UC.  I was diagnosed in November, 2019.  The biopsy was Grade 3, so I had surgery right after Christmas.  I was hoping it would be sooner than that, but the surgeons were off for Christmas holidays.  After the surgery, I learned there was no spread, it was stage 1A.  Because it was Grade 3, I had vaginal vault radiation once I'd recovered from the surgery. The radiation is a little uncomfortable, but the staff were fabulous. I'm feeling great, and I hope you soon will be too.  Sorry you had such a bad experience with the medical system--that must have been very hard.  Hope things start to improve for you now. Be good to yourself, rest when you need to.

Re: Uterine Cancer at 37

Posted by Jlo on Jul 25, 2020 4:39 pm

Natalieca:

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
joan

i hope your oncologist appointment goes well.  

Re: Uterine Cancer at 37

Posted by Lacey_adminCCS on Jul 27, 2020 2:23 pm

Oothoon13‍, Jlo‍, Patricia319‍, a3a‍, Kathy49‍ - Thank you so much for sharing your experiences and tips.

Natalieca‍ - How are you feeling this week? Any news?

Re: Uterine Cancer at 37

Posted by Natalieca on Jul 27, 2020 10:40 pm

Lacey_adminCCS‍ hello! I had my first oncology visit today.. endometriod endometrial carcinoma FIGO grade 2.. they were talking about options for me to possibly have IVF or freeze eggs, but I just want to get everything out.. they told me I’d have to have an open hysterectomy 😖 it was weird, the dr examined me with her hands and then said based on that, I would need an open hysterectomy.. that they wouldn’t be able to close me up that way 🤷🏻‍♀️ It just sucks going from “yay I’ll be home the same day” to “multi day hospital stay, alone due to covid, catheter and all” 😬😖 but she seemed optimistic that we would have a better chance taking it all out that way and hopefully taking all those cancer cells out With it.. thank you for asking 😊 

Re: Uterine Cancer at 37

Posted by Lacey_adminCCS on Jul 28, 2020 9:39 am

Natalieca‍ 

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!

Lacey

P.s. Did you talk to Mom?

Re: Uterine Cancer at 37

Posted by Jlo on Jul 28, 2020 3:13 pm

Hi Natalieca:

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.  
joan