Talking Frankly about Living with Advanced Cancer

@IndianaScott Hi Scott. Your wife sounds like someone I would have loved to have had as a friend. We have interior design in common (and wine). Life can be so unfair when disease comes along and snatches away your dreams. Big Hug to you, Scott.

Thanks @windwalker Hugs back!

Hi @allisonsnow
You wrote about one oncologist ordering a PET scan every 3 months and now you have an oncologist who doesn't monitor with PET scans. And you asked, "Who's right?"

Naturally, it is a great and valid question to ask your current oncologist why s/he doesn't order quarterly PET scans. I encourage you to ask.

Not knowing all the details of your case and I'm not a medical professional, I can only tell you that there are many factors that go into deciding when to do imaging studies and when not to. Sometimes, more is not necessarily better. Scans can be trying and may even cause side effects themselves. When cancer is very slow progressing or in remission, it may not be necessary to be monitored as frequently.

Perhaps you are having other tests to replace the PET scans. What tests do you now have with your 3-month visits?

I have complete blood work and a CT. That is until this last visit when I was only seeing my pulminalogist and I ASKED what the blood work was checking for. They didn't schedule a blood work-up. I know my cancer does not have markers and the blood work was necessary while on chemo but I will have to check with oncologist on who is ordering and why? I just like to know what they are looking at, I know there is a lot that needs to be monitored at this time but it is never discussed during my meeting with Dr. unless I bring it up.
One of the great things about most Mayo Dr.s' is that they will take as much time as you need for questions. I had growth during chemo so we stopped that in Jan. and had more growth in April, not much but enough to be considered growth … more than the 10% rule my Dr. goes by...he says anything less than 10% is considered stable. That's what he thinks LOL to me growth is growth!! and all those littles add up to a lot ! If I may add a comment for @ventibug anxiety can suck the joy out of living if you let it. It sounds like you have a strong faith so all I can offer you is trust and be thankful. Trust that God will give voice to the questions you have and be thankful everyday. People would look at me as though I was crazy when I said Cancer was something I could be thankful for in that it has made me a better person. More understanding, more giving more generous of my time and so much more. Thankful for the 100% joy I take in 5 grandsons 2 of whom were born after the cancer. I just turned 60 which in itself is a gift, I was given weeks to months to live when diagnosed that was 9 years ago.
Of course I still have the pre-visit anxiety but not as drawn out as it used to be. I don't believe that will ever go away. Holidays bring so much Joy and sadness accept that as your new normal, don't try so hard to not be anxious or sad or angry It is all part of the journey.
He knows the plans he has for me. If any of this helps I am glad.
allison

Yes, it helps. Thank you, Allison.

You are a step ahead of me I have gone between a Samsung and a LG I used to think I knew a bit about navigating computers... that was until it came to phones !!! LOL I was ok at first but my latest phone a simple smartphone seems to be in a foreign language. My husband used to say he had a stupid phone hahaha but not anymore he is leaps and bounds ahead of me and that is just not right LOL
but all kidding aside our phone and the computer can become a life line some times those close to us just don't get it and we need someone who has been there...done that and that is what we get here on connect. It comes from a lot of different directions, you just need to find the one you connect with and go from there.

Hello @ventibug
Hope your Samsung & you have a long lastning & satisfying relationship, ahead of you. I am an IPhone & IPad user & it is too late to start learning how to use an android gadget. I have a computer but don’t remember where I have parked it. My memory is a bit of mess and I have accepted my condition with difficulty, due to 23 years of chemo, cancer & other treatments. I am always such a positive and happy person but now I feel that I am lost in the deepest whole of depression that can be found on earth. I feel that my husband is very tired of being this great strenght, loving partner of mine. It is not easy with ups and downs in my different treatments, side effects and various reasons to be hospitalised, more often recently. Between us I am tired of being alive but sitting in this waiting rom before the final D”eath”day. I have being diagnosed 4 time with stage 4 cancer. I don’t know if it was thanks to my Sunny personality or my wonderful oncologists that I have survived this far. But as said before, it has become tiring just waiting. On the bright side, I Said hello to my new grandchild, a little boy for almost two weeks ago. Didn’t even believe to be able to meet my first grandchild, a very bright and beautiful girl who would be 4 years old quite soon. So you see life is full of surprisens even when we found ourselves at the bortom of darkest whole in the world. My aim is to find a comfortable and pleasant mind zone for my beloved husband, where he can relax and gather his strenght back.
I am so happy that you are a believer, your trust in God Will help you through this ordeal. Nobody understands your situation better than you, but please find a place in your mind that you can the reasons for being lucky. Mine are that I have a wonderful tired husband, a handsome son, two wonderful grandchildren, and still with my spread stage 4 cancer for the past 3,5 years, I have been enjoying most of my days. If I die now, you must know that while feeling the blue, I am the luckiest woman alive.
Take care beloved ventibug❣️

@ventibug, I'm glad you found the Start a Discussion button, which is found on the Group page, for example the Cancer group https://connect.mayoclinic.org/group/cancer/.

If you have further questions, here are some helpful tips on how to use Connect https://connect.mayoclinic.org/get-started-on-connect/

I connect to almost everything you have said @saltis.. At one time or another have experienced it all especially the feeling of being tired of the fight but battling with that feeling is the stronger emotion of feeling blessed with the cancer, as I have expressed many times I am a better person now. So @ventibug I hope the replies and welcomes you have had and will continue to get supports the feelings of gratefulness for what you can still experience. If anything is "normal" during this time it is that you can feel Gods love at the same time you feel depressed for what you have lost. You can feel joy for the gifts you are still getting at the same time you feel sadness for what you have lost. Here you find compassion and understanding for whatever "stage" you are in. @saltis said it very well.

Allison

Dear Saltis, Your descriptions of your experiences and emotions are wonderful. Twenty three years is a long time. You give me hope that I may outlive my 18 month prognosis. I've wanted a 50th wedding anniversary for 43 years this week. We will see what God has in mind. Bless you in welcoming that new grandson. Pictures were taken, right?
I, too, am blessed to have a husband who takes excellent care of me. This is a new role for him in this last 6 month and he has really stepped up. I am so grateful. I can't imagine how tired he my become and it is hard to be on the receiving end of nurture all the time. Yet I am so grateful.
You mention feeling foggy. I can tell a difference already so I think you do very well. Thank you for posting. I feel understood when i can empathize with you. Ventibug