English Community

Good morning everyone.  I am new to the community. and let me begin by saying thank you to all of you beautiful souls for sharing your experiences. It is so important to those of us who are struggling with this new diagnosis. I have been reading all the comments for a few weeks in the beginning I didn't know if I wanted to share but reading so many of your posts makes me want to do the 
same. So…. Let's me introduce myself  I am a 68 year old widow and Mom to three amazing sons age 49,42,37 and grandmother to 2 beautiful granddaughters age 12 and almost 2 from Brampton Ontario.

I like some of you had very little or mild symptoms slight fatigue, shortness of breath and mild lower abdominal pain discomfort which I would describe as mild pressure but nothing I would call painful. I also had a nasty cough that would not quit.which is what took me to my GP initially. I also mentioned the a do al discomfort at which point she ordered chest X-ray and abdominal ultrasound. 
I say Thank God for my proactive GP who  called me as soon as she these result and send me along with a letter from her to the nearest Emergency department on July 23 of 2024. Long  story short they drained 3 litres of of fluid from my right lung and found a mass in my left ovary.I was admitted  for three days where they ran a few tests  and was referred to Respiroligist  and gynaecologist oncologist at Sunnybrook 

I had surgery August 30th. Bilateral  salpingo-oophorectomy Omentectomy to remove my ovaries, fallopian tubes and omentum.I had had a partial hysterectomy in 2006 when I was 49 to treat Fibroids .

surgery was successful I had an amazing surgeon. She removed a 20.5 cm mass from my left ovary .

The pathology report confirms Low grade serous carcinoma  in the left ovary also present in the right ovary. 
all the other organs  are clear   Lymph nodes clear. metastasis Pleural effusion in the right lung 

No chemotherapy or radiation therapy for me I opted for the hormone therapy I am currently on Letrozole.

 And sometimes I wonder and worry that I made the right choice. 
 I would be curious if there are any other members who opted out of chemotherapy/ radiation therapy and how you are making out 

thank you all for being here it means a lot 

Hi @asatino and welcome. I'm so glad you found this group and thank you for sharing your story. I believe everyone needs to make the treatment choice that makes most sense for them. Would you be willing to share what led you to opting out of chemotherapy/radiation therapy and choosing hormone therapy (Letrozole)? Sometimes that background is helpful to others who may experience something similar to you. It's all about sharing information in this forum. No rights or wrongs. No judgment. But knowledge is power for Teal Sisters.  As well, how is your medical team monitoring you? Do you have regular visits for bloodwork? CT scans? CA125? I'm just curious. Please only feel free to continue sharing if you are comfortable. Also, yes a huge round of applause for GP's that are proactive and responsive for their patients. I too have an amazing GP who jumped on things right away for me. That alone can make a huge difference going forward.

Again, welcome and thank you for sharing. 

Hello to all my Teal Sisters.
I am happy to share more information regarding my choice for treatment.
I am not sure if I mentioned in my initial post but the pathology report after surgery and the follow up with the surgeon confirmed that the tumour which was removed(20.5cm) from my left ovary and also present in my right ovary was a low grade stage 4 sarcoma. The Tumour had not attached itself to any other organs and the lymph nodes were clear. From what they saw there no trace of cancer.

After some research but not too much because sometimes the information is overwhelming but on consultation with my oncologist who let me know that there is not much research with this type of ovarian cancer but from the information she did have there was nothing that indicated it would be more beneficial to me to have the chemo than not and so I opted for the hormone therapy (Letrozole).
This felt like the right decision for me. Do I doubt myself at times? Of course I do!
I have CT scan of abdominal Pelvic and chest every three months and the follow up with my Oncologist to review the results
So far all good I have not had C125 bloodwork since before the surgery but i I have a requisition for blood work before my next CT scan which is booked for May21st.
And the waiting between the CT and follow up is always the most stressful time for me.
I hope this explains my decision ….this was right for me but maybe not for everyone. We all are on the same journey and yet they are all different for many reasons

Any feedback from anyone else on a similar journey would be appreciated

Angie

Sent from my iPad

@asatino Thank you for sharing.

Hi @asatino

Welcome to the group and thank you so much for sharing this with us.  The fact that you were diagnosed at Stage 4 and are doing so well is inspiring for me.  So truly, thank you.  I too was diagnosed with Stage 4 serous (but high grade vs. low grade) after having a cough that wouldn't go away which ended up being a pleural effusion.  I was started on chemotherapy right away to address the fluid on the lung. Three rounds, followed by surgery and then six more rounds of chemo which just ended March 12.  Immunotherapy was never discussed as a treatment option for me and I never thought to ask.  Maybe because my tumour is high grade vs. low grade?  No idea, but I'm definitely going to ask my oncologist when I see her on April 7th!

Welcome @asatino to our group and for sharing your story.  You, like me, have LGSC which a few of us share.  There aren't many ladies with it as the most common type HGSC prevails on this site.  I, too, had surgery to have much removed and am going on 3 years. I, too, take Letrozole to combat it and we are unsure if it does or does not do anything at this point in time.  All I know, is that I have been given a timeline a couple of times now and have surpassed them.  For that, I am forever grateful.  I still have flareups due to partial bowel blockages that pop up every now and then.  I am on a low residue diet to help combat that as well.  Sometimes I run into trouble when I don't watch what I eat and then I have to turn to my meds to get me out of trouble.  This consists of Halidol, orally, mainly and then going to a complete liquid diet.  If that doesn't work and I can't keep it down then we go to sub cutaneous meds.  My insides are sensitive and I have to watch what I eat so that I don't get bloated and sick from eating what I should not have.  This is spontaneous and sometimes I don't know why it started and other times I know it is the food choice I made that started it.  Watching my diet and sticking to a low residue diet can be difficult and cause some minimal choices in food to eat.  It sucks to constantly watch what you eat and make sure it doesn't cause a flare up which will happen after eating something.  It usually takes a few days to come out of it with taking the meds via the doctor's orders.  I just finished having a flare up so am back to really watching what I am eating.  This time I am eating cottage cheese, applesauce, hummus, eggs, etc to help me get back on track.  

You ask the question about opting out of chemo/radiation. These are not on the table for me, unfortunately. I have come to the end of what they can do for me.  So, it is Letrozole or nothing and we wait. Chemo is off the table for sure and so is radiation so it leaves no meds left to help combat this disease.  I make out as well as I can daily and try to get in my exercise daily by walking to the grocery store to make something for dinner.  I find the hardest part is making the family something for dinner while I can't have it.  It sometimes gets difficult in deciding what to make as I do try to include myself in the dinners but other times can't due to what it is.  It would just flare me up and cause me to be in distress so I choose not to eat it and make dinner solely for them.  

How have you been making out?  Is eating an issue for you too or not so much?  I miss so much food that I used to be able to eat that it is difficult to look back at it and remember all the things I used to eat compared to now.  Sure can  be frustrating at times.  Other times I figure ways around it.  Like tonight I am making them like a frittata with chicken.  I should be able to have some of both with no issues.  It is always a wait and see type of situation.  

Well, I am thankful you found us and hopeful that you will continue to interact on this site.  You can join us on Thursdays for our Teal Thursday chats that are typed out so that you can always catch up should you not be able to join.  Some ladies are able to and some are not.  I am usually on even if there doesn't appear to be anyone on site either.  It can be a way to connect for the week and tell us how you are doing.  Perhaps you will join us this week.  I look forward to chatting with you some more especially if you have questions or concerns with the LGSC and our journeys.  Do you have any issues with partial bowel obstructions?  I hope you don't but there are ways to navigate it if you do.  Mainly by diet.  Keep up your positivity and reading on the site.  Take care