Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Another surgery, I am scared
I was diagnosed with low grade serous 3b in 2015, have had 3 Surgeries so far, Hysterectomy, omentum out, debulking x2, chemo x8, oral chemo, Trametinib, etc my latest PET scan shows increase cancer, 20 plus sites in my abdomen. My oncologist met with his team and the radiologist, and the report said they can operate me again, with high possibility of many bowel resections and anterior abdomen lesions which once removed, the facia will need considerable reconstruction....all this stresses me out, will probably end up with an ostomy, do I go ahead?
Awaiting confirmation from my oncologist if this operation is "reasonable"...so anxious 😟
Awaiting confirmation from my oncologist if this operation is "reasonable"...so anxious 😟
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@Sylviequebecbc
I am sorry to hear this for you. As you know we have the same type and almost the same stage diagnosis except yours was B and mine was C when found. I have had all treatments you have had as well. In my case, I was told I was inoperable unless its an emergency due to risk of spread and complications of surgeries they would have to do.
I believe the ultimate question you must ask yourself is "How do you want to live and what does quality of life mean to you?" Once you have thought about that and answered it honestly with yourself, you will know the answer. In the meantime, it is very scary. We know what surgery looks like and how it feels to recover from it. Are you aware of what the risks are they are mentioning when 'many bowel resections' and 'fascia removed'? If not, ask. It is not an easy thing to comprehend. The ostomy itself was terrifying to me when I was presented with possibly emerging from surgery with one initially. Thankfully they did not need to do one. It was the fact that I would have to not only face healing from the surgery but also dealing with an ostomy and how to live with it. In my case the risks of surgery also include a high probability of material entering the abdomen and causing infection and/or death. The risk of spread is very high as well for myself. I am not painting a pretty picture but want you to know the reality of some of what it looks like so you can ask the appropriate questions.
In my case, I have decided that if the oral drug, Letrozole, is not working anymore then I am done. I will live my life the way I am and manage until I can't. I am currently in a lot of pain and we are seeking out why. Bloodwork shows no kidney failure yet and gave a urine sample last week. I have an ultrasound tomorrow. Guesses are it is my hydroureteronephrosis which is worsening and will mean I will need a nephrostomy. I also know that if I choose to do nothing and my kidneys go into failure it will be 24-72 hours before death. So a nephrostomy is not pleasant, changes my quality of life but will still have most of it to continue on. If they told me some of this was coming from my colon (where I have already had a bowel anastamose), they would have to convince me pretty hard to have surgery if they even suggested it. I want to spend the time I have with my family doing things I like to do until I can't. I know the time in the hourglass are running thin but hope I have more than I think. My choices are as long as I am not in a lot of pain, can maintain conversations and function mostly normally for as long as I can it is what I want. I have thought long and hard about all of this and is why I have been doing a lot of reading on death and dying. You need to decided what your picture looks like, where your 'line' is and what you have done. It is your decision to make, not your family or friends or even what we say. You MUST be positive in the choice you make, the risks and benefits and be solid in that decision.
You will do it and be kind to yourself. You are scared and don't have all the answers yet. If the answer came back tomorrow that the oncologist said 'no the operation is not reasonable'; would that make you feel relieved? If so, you know the answer, you must then accept it and be at peace with it.
I am with you 100% for this journey. If you are feeling anything and want to talk at anytime day or night, write here. We will help you along your journey. It is a difficult and heart wrenching journey individual to all of us with some similarities. Only you walk your walk but we can join beside you.3 -
Thank you so much @Strongwoman !
I knew this day would come, I guess it is hard to be prepared. I do not feel too bad physically, so mostly I live in a kind of denial. You and I have been in a lot of same place, I appreciate your support, I too am here if you need to talk ❤️
Have a wonderful day! Snowing here.....1 -
@Sylviequebecbc
Hey Gal! How are you doing? Have you had any follow up appt as of yet or awaiting for them to come up?
I thought I would update you about myself as we are very similar thus far as mentioned before.
As I have been experiencing increased left flank pain fairly often and recurrent in the last month to the point I required my break through medications, I reached out to my Oncology team to discuss. I was brought in for an appt, had bloodwork, urine sample, discussed meds to cope and was set up with an ultrasound. Funny enough, bloodwork looks good, nothing came of the urine sample, meds work and ultrasound confirms findings of the last CT scan. Now what?
Had a follow up with Oncologist on Monday and we discussed just that. My concerns were, no nothing 'new' was found but it doesn't explain the symptoms and increased pain, trending weight loss and trending increasing CA 125 levels. The Oncologist concurred and discussed bumping up my next CT scan to see what we can find. I have one on Wed next week.
I let my Palliative Doctor know and we discussed all of the above today. I know in my heart of hearts that 'something' is growing. What we need to determine from the CT scan is where and if there is anything we can do to ensure my 'quality of life' I want and decreasing my pain (if possible). Thoughts are, if we can find one isolated area, radiating the area may be a possibility with or without Dexamethasone along with it. This would be an option. As I stated before, surgery is off the table for me. I accept growth will occur and know it is more than likely doing just that. My questions that will get answered after the CT scan are: What next? ie/ what am I facing realistically, is the radiation an option, change of pain meds or addition or subtraction of meds to something else, what timelines am I looking at now or how will things progress from the information they have. That is where my head is at and the things I need to know. It will certainly get me to timeline out some things I have not completed yet and to have the conversations needed with my family.
So that is where I am at. I will keep you posted on any outcomes in the event it may assist you in your journey.
Be kind to yourself.
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@Strongwoman
I spoke with the head oncologist yesterday, he said no surgery for now since high chance of complications and decrease my quality of life, so limited options: more chemo with 10-20% chance of help, so he agreed I can try some natural treatment and re-do a scan 3-4 months after, and see where I am. I am experiencing some pain in my left flank periodically, not terrible yet. So I decided to go to the Burwig clinic in Spain soon, crossing fingers......
Stay strong!1 -
@Sylviequebecbc
Sorry to hear that you are considered inoperable due to complicating factors. It must have been disappointing to hear.
No, unfortunately with LGSC, further chemo for us does not provide a desrired outcome of reducing the growth of the tumours or stabilzation, let alone what one goes through while in treatment.
When are you thinking or have booked to go to Spain to the Budwig Clinic? I looked it up, it sounds interesting. If you would like to share your experience either during or afterwards, I, for one would be interested in learning more.
I wish you the best in whatever your decision is and hope you achieve your desired outcome. These are difficult decisions to make and I am sure did not come lightly.
If you are headed there soon, safe travels and it sounds like a wonderful environment to obtain treatment from. Plus, it's SPAIN, it is beautiful there (not that I have been there myself).
Take care!0 -
@Strongwoman
I just spoke a few days ago to an aunt of a friend who was diagnosed in her 50's with lymphoma cancer metastasis to lymph nodes and brain; she did the Gerson therapy for 2 years and her cancer is gone! She is now 85 years old and healthy! Cancer gone and never came back!!! So that is what I will follow. I should be going to the Gerson institute late April, and my doctor is ok with that!2 -
@Sylviequebecbc
Well you certainly sound excited about this treatment and going to the Institute. Where is this one located? Do you stay there for long? Good to hear your Doctor is okay with you going as well. Did they say anything else or agreed that you would be able to go and try it? How long does one do this for?
I will look forward to any updates you have along the way that you would like to share. April is not that far away considering today is the 15th and pretty much the middle of the month. You may have a lot to do in preparation of leaving.
It is a nice sunny day today and is supposed to be 4 degrees. I will take it for now.
Take care and thank you for sharing your latest news.0 -
I would like to hear about the Gerson Therapy. I'm a bit confused - is the Budwig place doing the Gerson therapy or is this a new thing? Let us know your experience and your outcome - that would be so helpful. Thanks.0
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Hello @BellaDonna1959 and @Strongwoman!
I am going to the Gerson Institute from April 13th to 28th, then continue the therapy at home for 2 years. The Gerson therapy has helped a lot of people with cancer, I spoke to the aunt of a friend the other day, she followed the Gerson therapy 30 years ago after being diagnosed with lymphoma with Mets to the brain, given 1 year to live....she is now 85, the cancer has been gone x30 years! So inspiring ❤️
The clinic is in Tijuana, they also have a clinic in Budapest, but Mexico is closer so I am going there! Their website is www.gerson.org
Budwig is another therapy in Spain, but the reports from past people is more positive with Gerson. There is also a documentary called "The food cure" where a journalist who wanted to debunk the Gerson therapy followed 6 people for 5 years....worth to watch, I bought it for $5 on apple TV.
I will probably start a new discussion and post my journey on Gerson, I am so excited !
Happy St-Patrick's!1 -
Please keep me posted - very interested. Thanks. Good luck!1
