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Two months in...

Two months in...

Posted by maggi on Dec 5, 2019 3:31 pm

Hello, I'm Susanna. 
I was diagnosed with high end endometrial cancer Oct 1, 2019. I had a complete hysterectomy including cervix, fallopian tube, ovaries and omentum on Nov 7. I am healing well. My issue is that the pathology report has not come back yet although I am assured it should be this week. I am having problems with the waiting. I do not like the uncertainty of not knowing if Bob left any minions behind. (I named my cancer Bob. Less scary) :) Another issue I'm encountering is that often I get, "Oh, that is such a good cancer to have", "It's a high survival rate" , "relax"and I'm like "great, but I'd rather not have any cancer and it is still so very scary for me"  OK...well, vent is done. I am glad to have found this forum and look forward to reading more from everyone else on how to cope.

Re: Two months in...

Posted by Brighty on Dec 5, 2019 4:01 pm

Welcome maggi‍ .   Thank you for reaching out to us.     Waiting is brutal.   We can all agree to that.      Sometimes it takes weeks for pathology reports to come in and there could be many reasons for that  depending on your individual  case.     My suggestion  to you is keep yourself busy with lots of activities.    What  do you enjoy doing that makes you happy? Do you have friends  to hang out with  and watch a  movie? There's the Hallmark Christmas  movies on 24 hours a day if you like romance.     Do you have a good support  system  of people that will not make comments like that???? I know people just want to help but those comments  are not helpful.    There was a post about a week ago 'what not to say' I'll see if I can find it and you can show it to your well meaning friends.      I'm going to also hook you up with some people who share your type of cancer.     I will be in touch a bit later when I get to my computer  and can search members for you.    Please let us know how you are doing and when you get the results of the pathology  report so we can further  support you.     

Re: Two months in...

Posted by Brighty on Dec 5, 2019 4:16 pm

I found a few members you may be able to connect with
Lynda D‍ 
Thank you ladies.   

Re: Two months in...

Posted by PinkCarnations on Dec 5, 2019 6:19 pm

Hi maggi‍  (Susanna)

I also went through surgery (Laparotomy) to remove my falopian tubes and ovaries (BSO) and also had parr of my omentum removed. (Omentectomy) I didn't have to remove my uterus or cervix as I had a total hysterectomy 12 years ago due to bleeding fibroids. (Should have removed everything at that time but the doctor at the time didn't feel that I needed anything else removed)

I had my surgery for ovarian cancer in August of this year and it has taken forever for my pathology report. At the end of September I was told that the pathology had went to another province for a second opinion. Then I was told it was unusual and there would be an addendum and an expert opinion...  then another addendum.. I have finally received a final report at the end of October...  the addendum is still outstanding and the comments include the importance of ruling out a primary from another location or mets.

UGH... the waiting for tests and reports is the hardest part. I returned back to work in mid September once I was healed from the surgery.. this was the best way for me to cope.

I continue to do tests and am not scheduled to see my gyne/oncologist until early January.

I wont even comment on things people say... all I will say is.. ignorance is bliss

Re: Two months in...

Posted by Lynda D on Dec 5, 2019 8:15 pm

Hi Susanna!!
Sorry to hear you are going through this! Yeah I know it kinda changes everything. The truth is we are all mortal and are not here forever....(i'm probably not supposed to say stuff like this but it is true) Figure out a way to let this experience help you in your life. I have. I too have high grade endometrial cancer and had everything removed! Not fun ...i'm now 5 months out from my surgery and i'm still not 100% yet. Hang in there. During this time try to figure out what it is you want to change in your life? This will help. It helped me. It gave me an excuse to cut out all the yucky stuff in my life cuz you realize life is short and you don't have time for none sense!
ps i opted not to do the chemo treatments

Re: Two months in...

Posted by Elsie13 on Dec 5, 2019 10:11 pm

Hi, maggi‍ , I had a complete hysterectomy in 2016, for ovarian cancer, and I also had to wait 4 weeks for my pathology report. Yes, people say rather silly things sometimes, but it's because they don't know what to say. 

Lynda D‍ , Are you willing to tell us about your choice not to have chemo? 

PinkCarnations‍ , What? The addendum is still outstanding, so you still don't have results, and you see your oncologist in January?!  Are you working full time?  I hope you are not getting too exhausted!

Re: Two months in...

Posted by Lynda D on Dec 6, 2019 8:31 am

There really wasn't a good choice for chemo or no chemo because chemo patients also had reoccurrences too. And the small margin for possible help from doing chemo was too small for me to go through with the chemo. They said that it MIGHT GIVE ME A 2 to 3% advantage........MAYBE..........and that wasn't enough for me to go through with all the suffering and risk possibly developing neuropathy suffering for the rest of what ever my life is...... 
They gave me a 90% chance of no reoccurrence without chemo ..........sooo
This is what I decided to do. We are all different and will make different choices given the same options.......so what ever you do you have to feel comfortable with it.

Re: Two months in...

Posted by Cynthia Mac on Dec 6, 2019 9:21 am

maggi‍ , I completely admire your strategy, and agree that no minion should ever be left behind. However, while naming your cancer is an interesting idea, I doubt I could name one after my ex! That would REALLY be giving him too much longevity in my life!

As for the waiting for your results, I know how frustrating that can be. One of the strategies I used with my Dad was to try and visualize what could be going on behind the scenes: yesterday, the samples went to the lab, today the admin set up the report document and gave it to the tech, tomorrow the technician will do the test (amongst dozens of others), and the day after that, he or she will fill out the report document. I get that after two weeks, you’d probably be running out of possible steps, but this gives you the idea. Distraction techniques, as already suggested, are good, from listening to music to “storm cleaning” the house (within the limitations of your recent surgery, of course.) The weather’s getting a bit dicey for it here in Ontario, but if you’re able to get out and have a 20 minute walk, and if you can work a meditation into that walk, that would help. (Having said that, it’s VERY PRETTY outside in Ontario right now - I’ve had almost a foot of snow fall in the last 48 hours. Very Christmasy.)

Until Cancer touched my life, I never knew what to say, and often came away feeling as though I’d probably put my foot in my mouth - again. After my Dad got cancer, I understood that the things I had said were always well intended, and meant to be encouraging. Some people offer very negative comments - I had one made to me recently by a man I had only just met at a dinner party, of all places, about his own mother’s end-stage lung cancer. (Gee, thanks, dude. That’s the kindest thing you could say after one of my friends told you my Dad has terminal lung cancer.) It’s never helpful (or appropriate) for someone to suddenly jump into a ‘how my [pick a relative] “wasted away” in [pick an all-too-brief timeframe],’ and that guy topped even that level of insensitivity. 

If you think back on the instances where someone made one of those comments,(“Oh, that is such a good cancer to have", "It's a high survival rate" , "relax") are you able to express what you would rather have had them say to you? I ask this in all seriousness, because I still offer some of those phrases to people (well, not “relax”, but certainly the others in a slightly toned-down manner), and if there are better alternatives, I will start to use them. 

“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Two months in...

Posted by maggi on Dec 6, 2019 11:57 am

Thank you for all the kind comments and suggestions. It is now Friday and I know the oncologist is out until Tuesday so another weekend with no results. I forgot to mention that the secretary had told me Monday that the report had come in but the doctor hadn't had time to read it yet. Apparently I'm not the only one with cancer. LOL...Sigh. I do know that the things people say are meant to be encouraging but it often comes out as uncaring. I have just recently got: " Why are you so upset? It isn't like you are dying! Now my cousin had this (insert cancer here) and let me tell you all about it. She died."  I might be paraphrasing but you get the point. Having said this, I must admit I have a very caring and supportive family. Hubby has taken on all the housework and shopping. Daughter is nursing me the best she can. Family and friends call and text daily and a few have visited with food. :D 

Re: Two months in...

Posted by Elsie13 on Dec 6, 2019 1:01 pm

Thanks, for the explanation, Lynda D‍ . There's a good chance that telling your story will help someone else think about their decision. 

Re: Two months in...

Posted by PinkCarnations on Dec 6, 2019 8:13 pm

PinkCarnations‍ , What? The addendum is still outstanding, so you still don't have results, and you see your oncologist in January?!  Are you working full time?  I hope you are not getting too exhausted!

Hi Elsie13‍  Yep.. I am still awaiting the last addendum, even though I have received the pathology report. I haven't seen my oncologist since she passed me by on the way to the OR. (I have seen all her minions though) For the time being, I am working full time + ... it's nice to stay busy with little time to think. Between work, my husband, and my daughter.. my life seems almost normal.. bar all the tests and visits with my GP. 

Re: Two months in...

Posted by Jlo on Dec 6, 2019 8:14 pm

Hi Susanna:

I had the same cancer as you with a similiar surgery 2 years ago.  My surgeon was bang on regarding the staging of the cancer.  The medical system wants you to heal before they start any treatment if it is necessary.  I am sure your pathology results will be available very soon.  I know the waiting is very hard and I suggest you keep yourself as busy as possible.  That's also very difficult after a hysterectomy, but I found that reading a good book really helped while I was resting and recovering.  I kept in close contact with all my friends on social media and made a few hats for myself, just in case.  

After my treatment was finished (I had chemo), my GP gives me regular check ups for cancer cells every 6 months for 5 years along with blood work.  He said he would continue the check ups past the 5 years which was comforting.  He encouraged me to come in between visits if I felt something didn't feel right.  

hopefully you will know next week what stage your cancer is.  Stay positive as that's really important.  I learned to meditate during this process and find it is still helpful today.  I  will be happy to answer any questions you have during your journey.  

Best wishes and I hope your cancer was caught early.