Talking Frankly about Living with Advanced Cancer

Hi i am still hanging on and getting ready to start a clinical trial. Its a phase 1 and because I have the HER2 gene, i qualified. I haven’t met with the clinical trial team yet, i just found out Wednesday of last week. I’m a little worried, it hasn’t been tested on humans yet. My CA125 is up to 1222 and my only other option is Taxol, which Ive had several times, and did well with it. If i get to the point where im in excruciating pain and a burden to my husband I will say my goodbyes and go into hospice care, hopefully at home. I have not seen an oncology social worker but I have an awesome Pallative care doctor.

Thank you, @colleenyoung, for tagging me in to theis discussion.

@miller03 While my story is not the same as yours, your thoughts and concerns, are very similar. Without going into a lot of detail right now, I offer you the following from my standpoint. I currently deal with an incurable blood cancer, failing kidneys, and a renal tumor.

First, be gentle on yourself. Find what brings you joy, whatever that may be. A hobby, a creative passion, nature, family, etc. Do what you need to do to be as healthy as you can. Exercise most days, even a stroll around the neighborhood at a pace you can keep up. Have a protein shake of some sort everyday; it will help pep up your energy, believe me! And raise some crucial blood counts. It’s okay to have a “lazy day” too, just not too many!

Second, get the facts you want/need to know, from reliable sources and your medical team. No sugar-coating for you, it sounds like [and sounds like me, too, here!]. Go in with questions written down, and get answers. Then, you have a great basis for decisions now and in the future. Cancer centers have amazing social workers who will help you clarify your thoughts, and understand how to talk with your family.

Talking to family/friends may or may not show they have the same thoughts/wishes as you do. As Colleen said, it is ultimately your decision. I feel my husband has a right to know what my wishes are. He knew going in to our marriage about my kidney issue, but cancer came along later. I choose quality of life over quantity.

Does this help you at all? I can respond further to you, if you’d like.
Ginger

Colleen, Thank you for your assistance and the direction of others that may aid me

... guide and stabilize..

I loved you answer and is helpful to me as well.

Thank you so much for this discussion. It mirrors things for many of us and it helps to put an okay on our individual choices. Sending the best wishes to you. How is your husband dealing with things? I have pancreatic cancer that is now in the liver and when we got the news my husband said if I die, he will die as well. There is so much to live for, for both of us but certainly that he carries on. I do not mention it much but am trying to get everything in order. I do want to talk with him about any service and cremation details but am waiting. I will tell my children but really I need him to hear me without the "I will follow you". Any suggestions? I am fighting this disease but am realistic that I may lose the fight some day.

Hi bb, I can understand your apprehension in talking about end-of-life planning for yourself when your husband counters with “I will follow you.” Might you be able to turn that into planning for both of you? It’s never too soon to talk about best endings and share one’s wishes with loved ones. You could discuss his wishes as well as yours.

Planning best endings is never easy, but it's an invaluable gift to your loved ones. These discussions can be among the richest and most intimate that friends and family share.

This conversation starter kit might help give you some ideas on how to start the conversation.
https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-ConvoStarterKit-English.pdf

I think the challenge might be to discuss things constructively. Do you think it might help to talk about him first?

GREAT suggestions. He is a non-practicing Catholic but I think he would want last rights but have not asked him. Thank you so much for the support. Will let you know how this proceeds.

My husband and Adult daughter are are aware and supportive of my directives. Having had parents that shared theirs with us we were able to plan and grieve knowing what they wanted, this was a blessing. We all reach an end in our life, discussing it doesn't cause it but it can bring another level of intimacy. It's great that you have your daughters to hear your requests as your husband may not be receptive at this time. Letters are another way to express your thoughts for him, for when he may be more open to them. Wishing you peace, Jen

I received a radical robotic Prostatectomy via the da Vinci method 15 years ago this month. On November 12, 2021 my PSA was tested at 7.6. On January 31st I received the results of a PET Scan executed on January24th and the results of a PSA test drawn on January 13th. The PSA came back as 2.83 and the 'remnants' from the Prostatectomy were shown to have metastasized. Can someone please explain to me how this is possible without any medical intervention? Thank you.