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Sandi6

Thanks for reaching out. Unfortunately I experienced complications following surgery, ended up in ICU, and almost died. Grateful to be alive. I’m home now and the healing has begun. I’m struggling with my bowels, but understand that this is normal. I’m still finding it difficult to be up and about, spending most of my time in bed. 

Sandi6

I have the kindest, most loving and supportive husband taking care of me. He didn’t leave my side the entire time I was in the hospital, hand feeding me and helping the ICU team every step, all of which I’m incredibly grateful.

Strongwoman

Hi @Sandi6 I am so sorry to hear that.  It must have been a very difficult time for all and possibly times you don't recall at all or barely.  What is going on with the bowels?  I have been given a low residue diet (low fibre) to follow including when to do which phase of it.  If you think it would be of any interest or use to you, I will be more than happy to share it with you.  Let me know.  It may help those bowels and let them rest.    The recovery phase is hard and full of small walks and rest.  You will get there.  Lots of healing vibes being sent your way. 

Sandi6

Thanks Strongwoman! I would appreciate having a look at your low fiber diet. I’m open to anything that might help.

Strongwoman

@Sandi6   I have attached below the handout I was given.  I will do my best to explain so that it makes it easier to follow.  As I was in a crisis when I went in, meaning blockage in 2 areas, I remained on the fluid portion for a week.   I will start introducing the minimal one in the coming wks and go from there. If I feel after eating/drinking anything that it isn't sitting well, then wait and see.  If still bothersome, go back to fluids and see if it resolves itself.  Then if doing well and tolerating minimal diet well after a month and feeling well with no symptoms, then I can do the low fibre one.  She said I will constantly fluctuate between all of them.  It is up to me to monitor my own body.  Making sure nothing is more than 2 grams of fibre is key even when I feel my best.  My GI system is sluggish so it makes it more difficult for me.  She said, some will be fine and can maintain the low fibre one for a long time and others just can't.  The biggest thing to remember is this with blockages, if you are unable to pass gas, very bloated and uncomfortable for more than 24 hrs, you MUST go to the hospital for assistance.  I know this and why I went straight to hospital this last time.  I had too many partial blockages in a short period of time and knew this past one felt different.  That is me and my body.  I am hoping this helps and I can get back to eating some things.  I may look into a juicer down the road but until I can get to the next stage and feel better, I am not up to it
  I hope this helps and if you have any questions, let me know.  I asked a lot when the Dietician was with me along with the surgeon (yes, I was that close in my crisis) as well as hubby asking questions.  Ask away anytime!
Take care 

MOVE23

I was diagnosed with endometroid ovarian cancer stage 2a N0M0 high grade with a p-53 mutation.  Before surgery (December 4 2023), I developed a pulmonary embolism and then pleural effusions and was in the hospital for one month pre-surgery. I had a total hysterectomy with bilateral saplingo-oopherectomy and removal of omentum and appendix. I am now due to start chemo with carboplatin and paclitaxel next week.  I have been offered 6 chemo cycles or 3 chemo cycles + radiation. I live in B.C.  The radiation oncologist told me that a lot of jurisdictions just offer chemo X 6 which is the gold standard.  I am not sure why I am being offered radiation and the radiation oncologist wasn't too convincing.  Does anyone else have experience using chemo+radiation for their primary treatment?  Prior to diagnosis, I was a fit, healthy 62 year old.  Thanks.

Strongwoman

@MOVE23 Welcome to the group.  I am saddened to hear all that you have been through.  It sounds like it has been a tough journey thus far.  You have good questions and some of the ladies may respond a bit later.  Please feel free to join in our Teal Thursday chat today at 1pm ET.  There may some ladies online then that can assist you.  
  Do you know why they are offering radiation plus standard of treatment (6 rounds of chemo)?  Was that explained to you?  How do you feel about it?  I would like to say you are hesitant due to your line of questions and that you are not so convinced that the +radiation is the way to go.  Is that fair to say or off base?  It is so hard, isn't it especially when we look back and see ourselves prior to diagnosis and the state of our health then. So hard to accept what a new norm is.  How have you been feeling since having the surgery?  It is a big road to recovery and hope you are walking daily (not far) and able to manage okay.  
What was that the Radiologist said that made you feel that they were not 'so convincing'?  From what I know from other ladies, the chemo effects will be felt quite soon after treatment and radiation treatments take about 2-3 wks before those side effects kick in.  I have had the standard 6 chemo treatments but radiation was off the table for myself. 
  Hoping this helps a little bit and glad you have found us.
Take care 

JoanEG

Welcome @MOVE23 I am also in BC.  My course of treatment is 6 rounds of chemo (paclitaxel and carboplatin) and surgery.  So far I have had 4 rounds of chemo and I’m waiting on a surgery date.  Radiation was never offered as an option in my case.

Sandi6

Strongwoman thank you so much for sharing this information with me. I really appreciate it. I made the mistake of waiting 7 days before dealing with the blockage. I’ll get to the hospital for help much sooner in the future, if needed. Between the pain, bowel issues and vomiting, recovery is much more difficult than I expected. One day at a time! Grateful for you and this group.

melissa

@MOVE23 sorry about your new diagnosis, but welcome to the group! Like some have already mentioned the gold standard seems to be 6 cycles of Carboplatin & taxol either 3 cycles then surgery, or surgery first then 6 cycles. I have heard of 3 cycles for stage 1 but that's about it. I've heard of 6 cycles then radiation but not 3.

Considering the radiation oncologist left you feeling unconvinced I would ask for clarification. Especially considering you mentioned it is high grade. If you haven't done so already, perhaps ask why you can't have 6 rounds plus radiation. A multimodal treatment approach doesn't hurt, but I would be concerned about only 3 rounds of chemo. That's just me, best to seek out a second opinion if need be

Strongwoman

@Sandi6 Your welcome.  Here is what the surgeon and dietician both told me.  If you are having even the liquid diet and are NOT passing gas or having bowel movements within 48 hours, go right to EMERG!  If you are passing gas and things are moving then you may be able to manage at home with liquids.  I have a SRK (Symptom Response Kit) at home that we use if I call my nurses and they come to put in subcutaneous ports for nausea and pain.  They also state that if things don't change within 24 hrs of them doing that, that I am to go to EMERG.  Hope that helps and yes, definitely don't wait that long again.  I am finding it is taking me longer to recover from these episodes especially having them so close together.  

MOVE23

Thank you @Strongwoman.  I have signed up for the Teal Tea for next Tuesday (B.C.) Both medical and radiation oncologist offered the chemo+radiation but I was not convinced.  Neither really explained their rationale behind the recommendation.  I am feeling better now after recovering from surgery and then my first ever covid infection.  I do walk daily and plan to until that.
@JoanEG Thanks for that info.  I wonder if I was offered radiation because my tumour was high grade. Will pursue that line of questioning.
@melissa I will definitely pursue further questioning with the radiation oncologist. 

Strongwoman

@MOVE23 Your welcome and glad you are getting connected.  Your comment to @JoanEG I, personally, don't think it is because of soley being high grade that they may have suggested it.  My thinking steers me to location of tumour and possibility of shrinking it faster that way in a targeted area.  Or some other rationale warranting radiation vs chemo.  Definitely ask questions and obtain answers.  My Palliative doctor told me this "if you are fence sitting on a decision you either aren't ready or already know the answer is NO for right now.  When you feel it's right you will definite in your answer amd will not fence sit.  If not, the answer is NO"  I swear by it when making decisions now and if I feel I am sitting on the fence I say no.  Hope that helps you too.

mfallis

Good afternoon everyone, I hope this message finds you well. 

Our team at Ovarian Cancer Canada has been in touch with a woman experiencing mucinous ovarian cancer who would like to chat with someone facing this specific diagnosis. If you happen to have been diagnosed with this and would be willing to chat, could you please send me a private message and I can get you connected. 

Thanks so much, Marianne

Sandi6

My surgeon informed me yesterday that I have carcino sarcoma according to the results from the biopsy. The team is meeting to decide what kind of chemotherapy is best. I gather that the sarcoma is more complicated and rare, so chemotherapy may need to be different than what they usually use. 

Does anyone know anything about this diagnosis? It’s all new to me, and I’m very curious.

Strongwoman

@Sandi6 How are you doing with this news?  Yes, you are correct that a carcinosarcoma is rarer than the norm and does require some differing treatments.  It will be interesting to see what your team comes back with and what they feel the best approach to treat you is.  There are a few things that can be done but to do so, it would be speculation and I may possibly get your anxiety up over it all.  Be rest assured, the team and who they discuss your case with, will come back with the best possible answers for you and you alone.  Once you know what they will be doing, let us know and then other Teal Sisters that have had some similar treatment can weigh in so that you are aware of some of the side effects and/or positives of such treatment.  
For me, I will say that since joining the group, this is the first time I am hearing or reading about this but that does not mean that it has not occurred before.  From what I read, I would be prepared for the possibility of radiation being thrown out there in treatment protocols but could be wrong.  I will be curious to see what they feel the protocol for you will be.  Please know we are all here for you and the waiting is the toughest part.  Reach out anytime especially if you start to get in your head more than you should.  We have all done it and why this group is important. 
I will be thinking of you and hope you let us know when you find out more news so we can support you on your journey.
Take care
Tammy

Sandi6

Thanks Tammy! I really appreciate your response. I’m meeting with my surgeon next Tuesday, so I’ll definitely share the plan. I’m sad 😢 but am very accepting of this information. It is what it is and I will do whatever it takes to be well again. I think you’re a remarkable woman and love how supportive you are. You’re always quick to respond and as we’re all dealing with a difficult situation, that dedication is incredible. I’m grateful for you 😙 

Strongwoman

@Sandi6 Sounds good and we will be waiting to hear from you when you are ready to share.  You will have a lot thrown at you, so take your time in digesting it.  We will be here when you are ready. 
Thank you for your kind words. I am thankful that they help you along your journey. 

HorseGirl

@Sandi6 I’ve been following your story, and can appreciate how you are feeling about it all.  After a debulking surgery and six rounds of chemotherapy, I was ready to pull out my non-existent hair with frustration as the months dragged on. @Strongwoman is correct about not getting in your head too much.  That was a challenge for me!  I too, have found Tammy to be both a good listener and a calming influence.  Know that you are not alone in your journey, and that we care about you.

Sandi6

Thank you so much for sharing. I had my first chemotherapy session on Monday February 5, and it went smoothly. Today I’m feeling better than I have in a year! Feeling grateful 🥲 

JoanEG

@Sandi6 glad your first round went well and that you are feeling good!

Strongwoman

@Sandi6 That is amazing.  How wonderful that you feel so great after chemo!  It's amazing.  You go girl!