Diagnosed with stage 4 cervical cancer

Posted by thwilson702 @thwilson702, Apr 2 4:06pm

My Oncologist still has not started chemo or radiation and refuses to give me pain meds despite the fact it is affecting my sleep, work and quality of life. She says just keep taking Tylenol. Welp been doing that for 5 months about. 4-5 times a day. Tired of the pain, it only works for two hours at a time now. I read stage four is not curable, soooo, I am depressed beyond belief.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

I am going to see about going to the Mayo Clinic, hopefully my insurance covers some of it 🤞

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I am so very sorry to hear you are also grappling with pain. I am also sorry you are feeling depressed. I completely understand. I hope you are able to go to the Mayo Clinic–that is my fantasy even though it seems impossible for me at this time. I have found CBD oil (the kind that doesn't get you high) offers some relief, at least enough to take the edge off. I will keep my fingers crossed for you and wish you the very best. This is a horrible cancer to contend with. Having gone through natural childbirth and a kidney obstruction, I am no stranger to pain and this has knocked me over. I feel for you, sister. I am pulling for you.

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@thwilson702

I am going to see about going to the Mayo Clinic, hopefully my insurance covers some of it 🤞

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Dear thwilson702,

I am beyond sorry to hear that you have received such a frightening diagnosis and have been in pain for so long without adequate relief. Pain without hope of relief makes everything harder to manage.

I do not know what your treatment plan entails and hope that you have clarity around what's needed, what is planned, how soon it can take place, and what you can hope to achieve with that level of care. To have pain that is worsening and only an understanding of what WON'T be or isn't being done, rather than information about what options might be possible for you and worth trying, would freak me out and send me scrambling for alternative support and care. I do hope you are able to find your way to Mayo, or to find other sources of care that are accessible to you. I found that my insurance covered anything at Mayo at least as well as it did closer to home, where I was having trouble accessing care as quickly as my fear dictated. I hope that will be the case for you. You deserve excellent medical care, clear communication around what's needed, what's possible, what your options are, what timelines attach to each option, and how each option will be covered, as well as kind support and encouragement.

I send you and those who love you my hugs and my hopes and prayers that you will receive all that you deserve and soon so you can make the best of what you have.

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My Mother who is stage 4 Cervical Cancer just had another reoccurrence. She's had chemo and radiation that gave her 5 great years. She has had most of her gallbladder removed, a stent in her pancreas, and now most recently her kidney. Her kidney function makes her ineligible for clinical trials and she has been recommended Tivdak. My Mother has worked with two Gyno-Oncologists and one was strongly against that form of treatment, the other said he was personally a part of the team that got the FDA Approval and he feels strongly that it will give my Mother more time. The original Gyno-Oncologist said the timeline with no treatment was 6-9 months. I know I'm not the one that has to make this decision, but she's going to look to me to help through this. I read so many discouraging outcomes with tivdak, but I believe the Gyno-Oncologist and trust that it could extend her time which is what I want. I want to support her the best way I can and I don't know how to do that. Any words of wisdom?

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@jenningh

My Mother who is stage 4 Cervical Cancer just had another reoccurrence. She's had chemo and radiation that gave her 5 great years. She has had most of her gallbladder removed, a stent in her pancreas, and now most recently her kidney. Her kidney function makes her ineligible for clinical trials and she has been recommended Tivdak. My Mother has worked with two Gyno-Oncologists and one was strongly against that form of treatment, the other said he was personally a part of the team that got the FDA Approval and he feels strongly that it will give my Mother more time. The original Gyno-Oncologist said the timeline with no treatment was 6-9 months. I know I'm not the one that has to make this decision, but she's going to look to me to help through this. I read so many discouraging outcomes with tivdak, but I believe the Gyno-Oncologist and trust that it could extend her time which is what I want. I want to support her the best way I can and I don't know how to do that. Any words of wisdom?

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Hi @jenningh, such a tough position to be in. I can empathize as I faced a similar decision and timeline with my father and colorectal cancer. We (mom, dad and I) talked about the 6-9 month timeline and the possible side effects. My dad decided not to do treatment and we supported that decision. However, once in the office with the oncologist, he reversed his decision – much to our surprise. The clincher for him to change his mind is that the oncologist said that the chemo was a maintenance treatment and that he had the option to stop at any time. After 4 months, my father decided to stop due to side effects, choosing quality of life or quantity. He was with us for 13 months and the end was how he (and we) wanted it to be.

I hope this story might help. The decision is very personal. But like you, my dad looked to me to help sway the decision. I couldn't make the decision for him, but listened and discussed the pros and cons. Ultimately my role was really to be the sounding board and to support whatever he decided.

Hugs to you. Have you and your mom and her team made a decision in the meantime?

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