Talking Frankly about Living with Advanced Cancer

Hi Miller03, and welcome. I see from your profile that you are living with a very rare gynecological cancer, mesonephric adenocarcinoma (MNA) that has metastasized to your liver and lungs. Were you diagnosed with lymphoma and MNA at the same time or the MNA a recent diagnosis?

Hi Miller03, and welcome. I see from your profile that you are living with a very rare gynecological cancer, mesonephric adenocarcinoma (MNA) that has metastasized to your liver and lungs. Were you diagnosed with lymphoma and MNA at the same time or the MNA a recent diagnosis?

Hi @allisonsnow I am Scott and my wife, who was diagnosed with brain cancer, fought it for 14 years. We spoke about her fight often, but I always tried to take my cue from her as to how deep she wanted to discuss it. However a spouse or loved one is a bit different I realize.

The vast majority of our friends and her family ghosted on her when she was diagnosed. Friends of over 40 years disappeared and family refused to write, call, email, or visit for all 14. It not only changed my wife and me, but also forced me out of my comfort zone with others so I now speak up with those fighting this, and other, disease. I most often start by 'asking permission' by saying something like 'I am here and would like to talk with you about anything you'd like, so feel free to ask or reach out to me when you want. I also often follow that with a statement about the fact I know words often fall short, but I want them to know how much I care.

Some folks open up, some do not, but I always feel better for having put my willingness to visit with them out there.

I have also become faster with sending condolences to those I know who experience loss. I try and make my words focus on the person reading the card or letter or listening on the phone or in the chair across from me. Since I know a little bit about what they may be feeling I offer, again, a place for safe listening.

We learned the important thing is to simply reach out. While I don't recall the words folks used when talking with my wife or me I much more remember who it was who never said anything to either of us. I know some folks are just paralyzed by death, grief, illness, etc. A cousin of ours never communicated with my wife died, but she lost a son and I sent her a card. She wrote me back saying thank you and that she had been 'too scared' to write me when my wife died. For lots of folks mortality is just too hard a subject to approach I think.

Good luck with your health issues too!

Strength, peace, & courage!

I'm so sorry for your loss... here you are ...supporting other through it. You are an "Earth Angel" Thank you for being here for others.

@IndianaScott
I just read your post to miller03. I am touched by your sentiments to them. I was diagnosed with uterine cancer over 4 months ago and have since recovered from it. However, had it not been for the support and encouragement that I received from the group of caring people like you, I would have been very lost. I was lifted up with hope when I read many who wad going through the same thing I was so I felt I was not alone. Now, I find myself exchanging my thoughts to others in hope that I too can express my appreciation. I am also sorry for the miller's loss. Thank you for what you do. Kind regards.

Three different concerns at once : 2018
I sought care after a vertebral crush fracture, PET scan/ biopsy identified areas lymphoma lesion in L6 and hip. MNA in pelvic culdu sac between rectum and uterus. Third was a thyroid nodule that is monitered.

Thank you, @rose53 I appreciate the kind words!

It does my heart good to know sharing my thoughts, words, and experiences has been helpful. When my wife was diagnosed with her brain cancer and her surgeon bluntly said "so you're her caregiver now", I'd never felt that alone. Her's was an extremely complicated case and yet more often than not, as her caregiver, I was continually sent on my way with little help, support, or direction. Throughout our struggles, I always knew someday when I finally had time, I wanted to share our experiences in the hopes of helping someone else who might be feeling the same overwhelming sense of loss and dread I did.

I hope you are doing well today and wherever you are the sun is shining on your shoulders

Strength, Courage, & Peace

That's a hefty blow to get 3 serious diagnoses all at the same time. I understand you are now considering whether to continue with the full course of chemotherapy, am I right?

That's a decision that others have talked about here too:
- Going my way: Decided to stop cancer treatments https://connect.mayoclinic.org/discussion/going-my-way/

It's a very individual choice and also affects those around you. @miller03 are you finding the side effects of chemo to be a struggle? Has taking a break helped ease the side effects?

Colleen, after RCHOP. (1st chemo) and radiation my bone marrow is "tired" had Reclast in the past as I completed second ( first gyn) chemo also completed 9 rounds of Doxil(3rd chemo) June 2021. This last round of chemo had me chasing relief from ever-changing GI, mod-high fatigue, anorexia, depression ie. decreased Quality of life. Now, after 6 m break I feel mentally able to try Taxol, 3weeks on one off but: 1. my blood level are still low. 2. I'm having lt-mod fatigue. 3. Some discomfort from tumor load multiple/mod. growth MNA liver/lungs. My concern is whether chemo is additive to my quality or diminishing. My wishes are to protect my family from the extended ugly side of prolonged, invasive/ infection/ traumatic treatment ...when is it too far reaching for our own good? I know we don't have all the answers but there is probability and I need some guidance. Thank you, Jen