stage IV cervical cancer

@mmchap2120 While we wait for other members in our support group to respond I want to offer my emotionally support. The diagnosis is indeed frightening. I will offer this. I was diagnosed with endometrial cancer in 2019 and once I met with my surgeon and cancer care team at Mayo in Rochester I felt the same as you. I felt reassured and cared for at the first appointment and all through the process of surgery and follow-up. Once the plan was discussed with me at that first appointment my anxiety level went down several notches. I couldn’t know ahead of time what the outcome of the surgery would be but I knew I was in good hands.

Do you have a treatment plan in place yet?

Good morning! Thank you for reaching out. This is the most frightening time in my life and the support is so welcome. I was diagnosed two months ago and prior to tests they thought it could be stage II but after testing and biopsies they all agreed that it's stage IV metastatic cervical cancer. My team is meeting right now, as they do every Monday and I'm hoping that they will have a plan is place. My regular meeting with my oncologist is this Friday so I will know what is in place for me. Whatever the plan, I will be strong and pray for the best outcome possible. I am not a candidate for surgery, so I know that is off the table.

With support like you have given and talking to those in similar situations, it is helping already. Thank you so much for your time!

Hi mmchap2120,
I was diagnosed with stage IV metastatic cervical cancer in 2021 when cancer spread to lymph nodes in my neck. I had immunotherapy treatment which was ineffective so I went on carboplatin and taxol chemotherapy which resolved the lymph nodes in my neck but then the cancer spread to the wall of my bladder so I was put on a new chemotherapy drug called Tivdak. After 6 infusions, I was taken off this drug due to worsening peripheral neuropathy. Since then my PN has gotten much worse. The cancer on the wall of my bladder has improved and stayed stable at my last CT scan in April. If they decide to put you on Tivdak, the results are very mixed. Some patients do very well and have had as many as 15 infusions and others find it doesn't work for them at all. The side effects also vary greatly. Some are very sick with nausea and vomiting and lose their hair. Other' like me only had occasional bleeding from the nose, itching, no hair loss and peripheral neuropathy. If you have PN already, I am not sure if Tivdak is a good idea as mine
has worsened so dramatically after I finished treatment. You are lucky that you are at the Mayo clinic where you have a whole support team. I am sure they will give you the best treatment possible.

Hello!
It is such a confusing and frightening time and there is SO much to learn and decide. My team at Mayo is amazing and I know that I am blessed to be there. I really don't know anything about medications at this point as my final biopsies, scans, and all tests are just back, and we meet with my team this Friday. I so appreciate you and your willingness to share what you know, that's how we can help and support one another, right? Please keep in touch and let me know how you're doing. Sending my good thoughts to you.

Dear Mmchap2120,

I am not a survivor of stage IV cervical cancer. I just want to tell you that you are in my thoughts and my heart and I am wishing you well at every turn. I do trust that your team, if they are anything like mine was, will give you clear information (slowly, and repeating as much as you need to hear it so it is understandable), help you understand your choices with the potential benefits and downsides you may expect with each, listen to and respond to your questions and concerns, and treat you with kindness and respect throughout. They did not make my decisions for me, but helped me to be in the best possible position to make decisions that I could live with. That has been my experience and is the reason I travelled there for my treatment and will continue to do so for my surveillance. Please know that by sharing your experience and your fears and hopes here, you are now cared about and prayed for by far more than may respond to your posts. I will be thinking of you as you move through this week of waiting and especially on Friday and afterward.

Dear gynosaur42,
I can't tell you what your message means to me. The information you have given me, and the support are strength in words that cannot be expressed. This journey is not going to be easy, but I am ready to fight. Whatever the path is, knowing that I have people like yourself behind me is incredibly uplifting! I am beyond happy that I joined this group of amazing people who understand, share and care. These few days until my meeting with my team are excruciating as i can only think the worst. If it true, that the worst is what is in front of me then I will learn to lean on those who care for more support than ever. Again, I thank you so much for your words and will be back after Friday's meeting. Take care of yourself as you do others.

Dear mmchap2120,

I am so touched to think that my message has been helpful to you. You certainly deserve it! I have learned so much from others here as well. One thing that was offered to me by a cancer survivor I encountered through my work earlier this year who is much younger than me but has been through so very much more (and was diagnosed with a cancer that was in stage IV ), is that work is being done by dedicated doctors and scientists all around the world, all the time, and we just do not know what might become available in the near future that is not now possible. I was slow to grasp that as a source of hope, but now feel that for myself...that if I can just care as well as possible for myself each day, (taking one slow, deep in-breath and exhale at least every hour, getting up and moving my body at least a few minutes every hour, [even work tells me to stay seated], eating as well as possible without stressing about it, finding beauty, kindness, humor or fun around me to notice and savor, resting when I can, and connecting with those who care about me when possible), I may be making it more possible that some kind of treatment will surface that will serve me. That helps me to focus on the present (not a dark, unknown future) a little more, and I feel a tiny bit less scared. When I can't get myself out of being stuck in terror, I ask for help...either here/a support group, from those around me, or from a professional who can help me with it. You've got two more days before you can find out more information that will provide choices and a pathway forward. I will continue to keep you in my thoughts. And now, I will reach back out to the woman who gave me that advice, thank her, and let her know how much that helped me. You've been an inspiration to me, mmchap2120! Thank you!

Dear gynosaur42,
With every response I feel more blessed and supported! Today was a bit of a difficult day for me as my anxiety level about waiting for Friday's meeting is off the charts. I did some errands today with my husband and every place we went, all I could think of was "will this be my last time here"? I know that is not a good way to view things but it's all I could muster today. When I read your words about breathing and moving and trying to eat as well as possible without stressing over that also, I got strength and moved on! My daughter brought sunshine today with a joke about air conditioning as we spent a few hours at the dealership with a poorly running ac. She sent a text when she got home from work and said, "Do you have working ac"? I immediately thought her home ac was down, then she said, "Mom your car ac"! It just made me laugh out loud:) I want and intend to have more moments like that no matter the news on Friday. I have an amazing PCP who tells me daily about the advances in cancer treatments and that we are a village, this is not a solo act. Like her, you and the women on this site are incredible and even in the darkest hours, I will think about and remember what is said here. We don't give up, right? The one thing that scares me more than anything is the stage iv determination. With that though, I'm determined to fight even more! Have a wonderful evening and I hope we speak again soon.

I'm so glad you can find a reason to smile or laugh! It's hard to come by in times like this. I want to stress that I am not saying that you shouldn't feel scared or depressed about what you face, only that, when you CAN cultivate moments of light or laughter or calm or connection with someone who appreciates you, they are worth noticing and savoring, as a welcome balance to those other moments that are oh, so...here. You're getting through this very, very, very hard week, mmchap2120, moment by moment by moment.

@mmchap2120 I so remember the rollercoaster of emotions when I heard my diagnosis. I often had thoughts as you shared that included thoughts that I might not be digging in my garden next summer. And then my mind and body would calm down because I had my hands in soil in my garden. I felt like that until I had my first appointment with my GYNOncology surgeon at Mayo. I knew that my cancer care team would surround me and take care of me. I also knew that no matter what the outcome would be it would be OK. I might be digging in my garden next year or I might not be digging. I can’t see into the future although my mind sure tried to take me there. The anxiety was intense and so was the calm between the surges of anxiety.

Please be kind to yourself. This is a difficult time and you’re allowed to have all of the emotions that come up.