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I fell off the cliff into EC just 2 weeks ago

I fell off the cliff into EC just 2 weeks ago

Posted by Oothoon13 on Jul 19, 2020 5:04 pm

Hello—
I’m a late sixties, retired HS teacher, no close relatives, and my success at “old age” depended on my life’s being on an even keel. Cancer has been a plank-whack to the head.

It started Nov 30, 2019, when, during a trip to Michael’s, I found myself standing under a “sky is falling” moment when around 10 3x5’ wood framed canvases rained down on my head. I didn’t know what was happening but I thought that might be the end of me. When I got home, there was a 2x3” blood spot on my underwear.

Within 4 days, I’d started bleeding moderately with a significant amount of endometrial lining. I took myself to my local hospital’s Urgent Care section where I was told by a young male doctor that I was in the wrong place, I wasn’t an emergency and he wasnt there for referrals. (My GP had retired at the end of 2017 and I’d interviewed some but hadn’t ‘hired’ anyone else.) My blood work was (too?) good so he remained dismissive but did get me a referral to an OBGYN.  That appointment was scheduled for mid-Dec.

Meanwhile I continued to bleed, having what I called mini-periods every 2-3 days. They seemed to me to be periods bc they always started with sloughing off a fair amt of endometrial lining. Then that stopped after about 2 weeks and afterward I would have some minor spotting with a mini-period (2-3 days) every 3-4 weeks.

The appt mid-Dec with the OBGYN was odd. In the waiting room, I was told I wouldn’t like her bc she was too brusque. She was indeed. I was put in the stirrups before she came in. When I tried to tell her the nature of my bleeding, she shushed me. She didn’t ask about family history (there is a lot—mom died of ovarian cancer in her mid-80’s, for one). She got a PAP smear (clean) but a biopsy was too painful so she booked me for a D&C on Jan. 31 this year. 

The follow-up was delayed until March 5, not too long before lockdown, wherein she told me all was clear: she hadn’t seen anything suspicious in the hysteroscopy and, though she hadn’t collected enough tissue (why not?!?) for the lab to say conclusively all was well, they didn’t find anything in the sample they had. “Why can’t you just be satisfied with that?!” she said. “The uterine lining is thin and that’s why you’re spotting.” I told her two things that made her blanch: endometrial lining sloughed off and the family history of female cancers. As she dived out of the room, she said she’d get me a surgeon.

There were no phone calls from her office or anyone else’s after that and, within 10 days, doctors’ office were shut down for COVID. I was forced to rely on her “all is fine” diagnosis until I started getting heavy endometrial lining bleeding toward the end of May. And I was back to mini-periods every 2-3 days. I was pale and faint so I called her office again for help. This time, I was directed to a gynaecological-oncological surgeon who got me in right away. 

After an in-office biopsy, she called me with the results on July 3rd: Type 1 EC, Grade 2. She said she’d get me a CT scan for staging right away, asked for consent for surgery (which I gave) and told me I’d be having surgery in about 4 weeks.

I called and left messages with her assistant/ nurse (?) person bc I had heard nothing about either booking. She called me to apologize 3 days ago: they’d lost the booking. I am now booked for a CT scan on July 30, approximately when I thought I’d be having surgery—and exactly 8 months after the first spotting at Michael’s. This can’t be good.

She now also says she won’t book the surgery until after she sees the results of the scan. Something has changed but I don’t know what. With all the posts in here saying patients thought they were Stage 1 until their removed organs were biopsied—and then they were Stage3 or 4, I’m beginning to worry. On that last phone call, we were also talking (I believe I brought it up) that it was likely, with all that bleeding, the lymph nodes had been exchanging fluids with glands in the uterus—so that would be a likely transfer of cancer cells. She agreed. That’s, I believe, Stage 3.

I’m Wile E. Coyote falling off the cliff and grabbing  onto a branch…that breaks. Then landing on a shelf of sand…that crumbles. Then scrambling for purchase on a rock slide that’s gaining speed as it heads toward another drop.…

Can anyone tell me how to think about what’s happening to me?

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Kims1961 on Jul 19, 2020 10:07 pm

Oothoon13‍   Welcome to a wonderful supportive group of folks...who get it...or rather I should say - "got it"?  lol?

I'm glad you've posted in the Uterine group, so someone with the same cancer can reply.  I related to part of your story.  It was on my 56th birthday - after a small catastrophe with the BBQ - I ended up with burnt hair - that I found my lump.  Fast forward - after being told it was small and a simple procedure - I had bilateral mastectomy, chemo and radiation.  It seemed to go quickly from " we got it early" to , we need to do chemo and radiation.

Your example highlights so importantly that we need to be involved and on top of our health care.  Good for you - for pushing forward.  I"m sure you are keeping notes and getting copies of results and bloodwork etc.  I found in the early days, keep a journal of my questions, concerns, and test results, really helpful when meeting with my medical team. Do you have some key support people that you can take to appts, or help if you need it?  Sometimes having another set of "ears" in appts. helps - that, or ask if you can record your appts.  Often, I left an appt. and a question would pop into my head.

I'm sure you have seen the section in www.cancer.ca on Uterine Cancers:

https://www.cancer.ca/en/cancer-information/cancer-type/uterine/uterine-cancer/cancerous-tumours/?region=on

They also have Information Specialists you can call, if you need some further information.

https://www.cancer.ca/en/support-and-services/support-services/talk-to-an-information-specialist/?region=on

It seems many of our journeys start with bumps and hurdles . Hopefully when there is clarity around the type, grade of cancer - then treatment options are made clear.

I found once I started treatment, I felt more in control again.  Hang in there :). In these stressful " Hurry up and wait times" , distraction can be helpful.  Exercise - getting outdoors , was my therapy.  If I really needed to be distracted, I tackled the junk drawer in the kitchen!  Anything to keep my brain busy on other things.

Please let us know how you're doing.  So glad you posted!  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Brighty on Jul 19, 2020 11:11 pm

Oothoon13‍ .  Welcome.    I see you've  met Kims1961‍ who is awsome  and gave you some great advice and resources.    I found some members for you who have gone through something  similar .    Patricia319‍ 
Carjac87‍ 
Helentess‍ 
Ttjia‍ 
Birdwoman‍ 
@Kathy49‍ 
@Tilly59‍ 
Lynda D‍ 
and  a3a‍ 
thank you ladies   
Help is out there. All you have to do is reach out.

Re: I fell off the cliff into EC just 2 weeks ago

Posted by cancertakesflight on Jul 19, 2020 11:12 pm

Oothoon13‍  Like Kims1961‍ said, I'm glad that you advocated for yourself to get the attention you needed. She gave you some really great links to the information you need. It' really much better to go to reliable sources, especially since doing a general search on Google can show you misinformation and an overwhelming amount of information that may or may not apply to you. 

I had to advocate for myself several times in my cancer journey. While my breast cancer diagnosis was in 2011, I have had subsequent problems with my endometrial lining. I have had multiple D&Cs (scraping and removal of the uterine lining) and eventually I had a hysterectomy when my doctor found pre-cancerous cells in my uterus. I am grateful that I didn't have to go through two rounds of cancer treatments; I had enough 'fun' with my breast cancer treatments. The key is to keep on top of your doctors to make sure that you are getting the best care. Things have changed over the years. We no longer have to accept what our doctors tell us if what they say doesn't feel right or doesn't make sense to you. 

As for stage of cancer and possible treatments, no one can tell you exactly what your treatments will be until they have all the details. Waiting to get those results can seem like forever, however, deciding on a diagnosis before you have the details can also be an emotionally draining experience as well. If you are like me, you've worked yourself into a state at some point in your life when you were worried about doing something only to finally do it and discover it wasn't nearly as bad as you thought. The same is true now. You could worry about being stage 3 only to discover that you are stage 1 or 2. And, even if you are stage 3, it doesn't mean that things can't still be okay.

I had surgery, chemo and radiation, and managed to work through chemo and radiation. Granted, not everyone is the same, and it is a different cancer, but cancer treatments are not always like you see on TV.

Again, exercise, doing a craft or cleaning can be a form of distraction. I have never been worried enough to do some extra cleaning, but some people do. :-) This is truly unfortunate. 

I hated the chaos of not knowing what I was dealing with. I was actually glad to have a cancer diagnosis since it removed one of the unknowns. I was just glad to have a treatment plan. Perhaps having your own plan will bring you some kind of peace (or at least less chaotic). 

I like your analogy to Wile E. Coyote.  A cancer diagnosis can really feel like the ground is crumbling below you; however, if you remember correctly, Wile (we are on a first name basis) was always in the next scene. He bounced back quickly from every injury. He never gave up no matter how many times he got knocked down. Even while the cliff crumbled below him, he always end up on solid ground again.  

Please keep us posted if you feel comfortable. If you want me to see your post, make sure you type the @ symbol before you type cancertakesflight and select the pop up that looks for a match to what you typed. This technique works for anyone on the site. Just type their name right after the symbol and select the correct name of the match or matches that are displayed. 

Take care. 

cancertakesflight
 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Birdwoman on Jul 21, 2020 11:16 am

Hi Oothoon13‍  I am sorry you find yourself here but at least it is a comforting supportive space. Your story sounds a lot like mine. Bleeding at age 67 (Oct 2015), trip to emergency in small town, wait forever for gynecologist appointment, can't get sample in office, wait for D&C (Jan 2016), notified of cancer diagnosis Jan 24, radical hysterectomy March 3, followed by 6 months of chemo and radiation. Not fun but I am still here since my cancer was serous carcinoma Stage 3C, very aggressive.
My greatest wish for you is that your cancer is what my oncologist calls 'garden variety' meaning most EC is adenocarcinoma and not that aggressive. However, if it is serous or clear cell, then it is more aggressive and may require chemo and radiation. I hope you get some answers soon. I know the waiting is so hard. All distractions are welcome. What province are you in? Do you have support people who can help you if you have surgery? Please let us know how you are doing and whether I can help in any way. You are on the emotional roller coaster, hang on, it is quite a ride. Sending you a big hug! 

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Oothoon13 on Jul 21, 2020 1:18 pm

It does sound similar—even to relative months—except they got to yours as quickly as I’ve read they should: within 8 weeks. My Staging CT scan is July 30–exactly 8 months after the bleeding began. That’s partially because of COVID but mainly bc of the (failed) OBGYN who didn’t get enough of a tissue sample in the D&C. (I saw her yesterday about an anti-anxiety prescription she gave me. She is now denying she did anything at all—didn’t do a hysteroscopy, didn’t slit the cervix [she had told me on March 5 I had stitches bc she’d had to slit it to get in], didn’t get any tissue, not just “not enough to show conclusively”. In courtroom terminology I believe this is called consciousness of guilt. Now I have cancer—and she missed it—she’s worried.)
I have one friend who’s trying to be there for me. But her husband/partner doesn’t really like me and he’s pretty good at controlling what their day-to-day lives look like. So far she’s my ride when I need one. I wonder if that will always be true.
I came on here wondering if there was a Zoom Cancer support group. I’m entering that phase when I’m less comfortable around people who don’t have cancer. I’m frightened that the pathology report will indicate I need chemo as well. I went through that with my mother the ten months she took to succumb to ovarian cancer. I don’t think I can do it alone.
I live in a suburb of Toronto.

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Jlo on Jul 21, 2020 7:26 pm

Hi Oothoon13:

I am sorry that you find yourself on this site, but there are many great supportive people here.  I am a Stage 4 serous uterine cancer survivor, and like you I received a big disconnect with the OBGYN  group I was referred to.  I had a polyp and a thickened uterine lining and started spotting in late November 2016 and due to two cancellations at the hospital and nobody listening to me, I didn't get  a biopsy until May 10, 2017 which turned out to be Stage 3.  I was really upset with their unprofessional manner.  I had a complete hysterectomy May 26, 2017 and it turned out to be Stage 4, Grade 3.  I then received  6 rounds of chemo, completing treatment October 31/2017. Once I got to the Cancer Clinic, everything ran very smoothly.   I was 67 at the time.  My side affects were mainly fatigue, some neuropathy in my hands, but my tinnitus was quite severe.  

it took my GP about 10 days to get the results of my scans but he was right on it.    I would follow up with your surgeon within a week and keep advocating for yourself.  Uterine cancer is treated with chemo, radiation or both.  I know the waiting is very hard, so I suggest you keep yourself busy with things you like to do,  i read and crocheted a lot.  My follow ups after my treatment are every six months which include an internal exam and bloodwork and they are with my GP, but every province is different.  I was treated in Vancouver and Surrey, B.C.

if I can help further, along your journey, I will be pleased to answer your questions.  I hope your scans and surgery goes well.  

Best wishesJoan.  

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Ttjia on Jul 22, 2020 4:07 am

Oothoon 13  Hi I am joining this discussion because my name was mentioned,sorry to hear what you are going through ,I have nothing more to add everything has been pretty well been taken care of by the other members, we all go through the this journey our own way in many ways similar to others and then again different everyone of us has had their own unique experience and we also handle it in our own way,  Keep posting your support is here and one day you will be able to join another group, the survivors . We are here for you, ( good to hear from you birdwoman )                                                                   I am going in for my 6 month poke and prod checkup with my Oncologist tomorrow. Charlotte
Ttjia

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Jlo on Jul 22, 2020 4:53 pm

Hi Oothoon13:

You may want to contact the Canadian Cancer Society as they have a Peer Match Program.  They will match you with a survivor in your area.  The # I have is 1 888 939 3333.
As your ride may or may not be reliable, I suggest that you ask for a social worker to get involved in your case as you are alone.and may need support.  I found this information for you over the internet - ask for a doctor referral or
dial 211 or www.211ontario.ca
www.FindASocialWorker.ca

After surgery you are not allowed to lift anything, ie the milkjug, so you may want to make some meals in advance or decide on a meal delivery service for a few weeks.   
You may want to get a copy if the OBGYN's report in case you are thinking of putting in a complaint.
your surgeon maybe able to refer you to a good GP in your area.

i hope some of these suggestions are helpful.  As I live in BC, I am not familiar with the Ontario medical system.

sending you virtual hugs as I know how difficult this is and what you are going through.
Joan

 

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Lianne_Moderato on Jul 23, 2020 6:21 pm

Oothoon13

I wanted to mention that you may want to call our Cancer Information Helpline at 1-888-939-3333 to see if they are aware of any support groups doing support over Zoom now.

Hope you can find something. So challenging to get support with the current restrictions .

Best of luck

Lianne

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Oothoon13 on Sep 4, 2020 2:29 pm

Update: I had a radical laparoscopic hysterectomy on Aug. 11. Anaesthesia turned out to be a problem (as soon as the POCU nurses took me off oxygen, my blood oxygen dropped to below 80, though I wasn’t gasping for air, just trying to sleep) so I had an overnight stay. Got my staging on Wed. September 2. Type 1, Grade 2 or 3 (pathologists are debating), Stage 1B. After all I recounted above, as my Gynecologic oncologist said, I was d*** lucky. The cancer had made it all the way through the myometrium but not through the serosa membrane (have I got that right?). And it hadn’t tried to escape anywhere else: nothing in cervix, Fallopian tubes, ovaries or lymph nodes.

I will have adjuvant radiation, most likely brachytherapy. Don’t yet have contact with the radiation oncologist so don’t know how many times nor how long the treatment will be. I will have checkups with the gynaecological-onc every four or six months (depending on whether the pathologists come down on Grade 3 or 2).

i have met my doctor all of twice: once for the biopsy in June and again in Holding right before surgery. I won’t see her again until checkups. Is that common?

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Oothoon13 on Sep 25, 2020 2:55 pm

Further Info: With the addition of a third pathologist, they came down on the side of Grade 2, because more than 60% of it was that grade. One left lateral arm of the cancer had made it within 3.5mm of the outer membrane (I’ve seen the pathology report) and that happened to be the site of the Grade 3 cancer. At pathology analysis, it was found in a degenerative state; the tumour in no place had set up its own blood supply.

They are now offering me the option of radiation. The radiation oncologist says the likelihood of recurrence is roughly 8%. Brachytherapy (3 doses) will reduce that to 4-5% but will do significant damage to the vagina (most women who have this treatment give up on sex) and make the 6-month physical exams more painful.
it will also irritate the ureter and may lead to UTIs. It will undoubtedly increase the likelihood of diarrhea and the symptoms of my IBS.

How does one make this decision? Hurt yourself as a trade-off for (some) prevention? I’m tempted to try one radiation session and give up if it’s too painful. Has anyone else been in my position?

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Cedar on Sep 26, 2020 11:13 am

Oothoon13‍ I had the 3 sessions of Brachytherapy that you are considering. The odds of recurrence with no radiation given to me were 30%, so significantly higher than what you were given. Everyone's experience is unique, but I found the radiation tolerable, not painful, just invasive and a bit uncomfortable. I tried to take my mind elsewhere during treatments. I know there has been some damage to my body, I am limited in what my digestive system will tolerate (milk, ice cream, peanut butter, processed meats are out) but not drastically so. My treatments were in March, so I have had followup exams, during which I've learned to relax enough that it isn't painful. Sex was somewhat uncomfortable, but is getting better as my body heals and adapts. All in all, given my odds and what I know now, I would probably do it again, but not so sure I would with a lower chance of recurrence. 

Re: I fell off the cliff into EC just 2 weeks ago

Posted by IamJay on Sep 27, 2020 11:54 pm

Cedar‍  Oothoon13‍ .
First off Oothoon 13, these are tough decisions to make and I'm sorry you are in a position to have to think about such a difficult choice. Know that we are here to help along the way.

I just finished 3 days I  hospital doing Brachytherapy and will now be having external radiation. Cedar, I wonder if you have a special type of cream you can recommend to help with skin irritation on my vulva and nether regions? I'm worried about getting another yeast infection.
Any other tips you have to offer would be great.
Thanks
J

Re: I fell off the cliff into EC just 2 weeks ago

Posted by Cedar on Sep 28, 2020 12:14 pm

IamJay‍, I'm sorry your discomfort is extreme, I hope it starts improving soon. I just used the lubricant they gave me with the dilator at the Cancer Clinic, I don't remember the brand. The onco suggested Coconut Oil if I wanted a natural product, and someone else on this site suggested Repa-gyn, which is available online (I googled it but didn't get any) which comes in a capsule that you insert at night. Not sure if this will be of help to you, but hope you find relief soon. 

L

Re: I fell off the cliff into EC just 2 weeks ago

Posted by IamJay on Sep 28, 2020 1:08 pm

Thanks for the suggestions Cedar‍ 
I see by your profile picture that you may be a kayaker? Me too! Missing being on the water and looking forward to getting back in my boat next spring!
J
 

Re: I fell off the cliff into EC just 2 weeks ago

Posted by gillianm on Sep 28, 2020 2:18 pm

Oothoon13‍ -  Hi, so sorry to hear all that you have been through.  I also had EC - grade 3; stage 1B.  Also about the same age and without family anywhere nearby. And a similar experience with a slow diagnosis.  It was 14 months after the start of bleeding before there was a diagnosis.  The first gynecologist, after trying unsuccessfully to take a biopsy in his office, decided (without saying anything to me or to my family doctor!) that I was a very low risk for cancer so a biopsy under anesthetic was unnecessary. In the 14th month, the 2nd gynecologist did a biopsy easily in his office. After that everything moved very fast.  The pathology was back in 2 weeks and in another 2 weeks I was in surgery.

Are you considering a complaint?  I chose to write to the first gynecologist to outline what I went through as a result of his delay, lack of communication and unresponsiveness. It was a very factual sort of letter. The 3rd gynecologist (and oncologist) said to me that the delay likely resulted in the higher grade 3 pathology. I didn't write the complaint to the first doctor for any reason other than to make clear to him what happened so that perhaps next time, with another woman, he might make different choices.  He did respond and I give him credit for being fairly honest about it.

Due to the aggressiveness of my cancer, I had 5 weeks of external pelvic radiation (harder than I thought with more long-term side effects than I had understood would be the case. Ugh.) so I can't offer any help with choices re: brachytherapy. I'm glad other women here have offered their positive experiences with this therapy. I do hope your decision brings you health and peace.  A cancer diagnosis can transport us into what feels like an alien world - separated from all whom we know and love - by the experience of cancer. It something one simply has to live through to understand.

Blessings. Take good care.  We will be following your journey!!  Reaching out to others who have gone through is good medicine!


❤❤❤
~ Gillian

Re: I fell off the cliff into EC just 2 weeks ago

Posted by a3a on Oct 5, 2020 2:28 am

I had 3 sessions of brachytherapy radiation too. I found the procedure mildly uncomfortable--I use Muko jelly for the lubrication for the dilator (recommended by the radiologist). I haven't had many noticeable side effects.  I'm glad I had it--initially I was apprehensive, but the staff were terrific, and I felt I had to place my trust in them as they deal with uterine cancer regularly. Using the dilator three times a week has made further internal exams easier--doctors need to be able to do internal exams to monitor your health in the future.

I had a stage 1a tumour (no involvement beyond the lining of the uterus) but it was Grade 3, which is an aggressive grade, so that's why radiation was recommended. The radiologist said it would reduce the likelihood of recurrence from 20% to less than 5%. 

I had terrific care at the BC Cancer Agency in Victoria, and now have follow up exams every four months in my own town. I'm sorry to read that some of the women in this forum had difficult experiences.  Hopefully bringing it to the appropriate people's attention will make a real difference to how they handle treatment in the future.

Thinking of you, and hoping your treatments go well too.
 

Re: I fell off the cliff into EC just 2 weeks ago

Posted by JustJan on Oct 6, 2020 8:48 am

Oothoon13‍, I am glad your surgery is over and you are now planning for your treatment going forward. It can definitely be daunting looking at the risk versus reward when it comes to cancer treatments. Like you I was diagnosed right after I retired at the age of 59. When I was diagnosed with Stage 1 triple negative breast cancer and was referred to the oncologist to discuss chemo, it was presented as a choice to me. What I looked at was my potential life span with or without chemo as opposed to the percentages. For me, without chemo my expected life span was 80 and with chemo it was 82. Given that you lose about 1 year of your life for treatment and recovery and the potential long term impact to my health, I ended up declining chemo. This approach really helped make it clear for me. Fate would intervene just a couple of months after that meeting with the oncologist when I was also diagnosed with ovarian cancer and had to do chemo anyway. Just know there is no right or wrong answer, just do what you feel is best for you. 

I wish you well as you try to come to your decision. 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers