Recently Diagnosed and Adjusting

hey jcf0513, I am sorry to hear what has been going on, let's try to take a breath.

I am glad you are working with a gyn onc. That is why you want one, because they have the additional training a reg gyn does not have. However, there is a lot not known yet. You really need the full report to know what you are dealing with and what the plan is the gyn onc is building. I would recommend you ask the gyn onc's office if they did (or are planning on doing) genetic testing on your cancer. Some gyn cancers are very responsive to the newer immuenotherapy drugs because of dMMR, p53, POLE, etc. This is important.

I was able to work during treatment (I had an office job), with a few exceptions. During chemo, that day was pretty much that - a day of treatment (tx). I guess you can work if it is computer related. The few days after each chemo make you very suscepticle to infection, so you just have to be careful. "Chemo brain" is real, and it made me mad. I learned to keep a note pad and pen ready to jot things down so I could remember what I was going to say or remember what I wanted to ask - but it does get better. Everyone reacts differently to chemo, but for the most part what I have read here, the other women have been able to adjust. I think you need to be kinder to yourself, but you can do it. While we all say it is "doable", that doesn't mean much until you are living it.

If possible, see if there is a dietician you can talk to. How can you best help yourself in the process. Chemo is constipating so you will have to figure out the Miralax schedule, and make sure the plan has you stepping down on your steroids after each tx. There are good nausua drugs and that will help with issues there.

I don't mean to scare you, you seem pretty sensible with all you do and have done. You are a statistic of one, and you are going to have to be your own advocate.

Hello jcf0513,

I am new here and decided to join. I was diagnosed on July 25 with urethral cancer. Shocked and still trying to figure it out. It's been a whirlwind since July 6th. I get my port on Friday and my first treatment on Tuesday the 6th. I too am planning ahead with who will help me through this 18-week process which was another shocker. I'm single so have family and friends who will be my support. I can't wear my sister out so I'm thinking of rotating shifts weekly. Your post and NoTimeForCancer post is very helpful. I have little words right now because this whole process is terrifying.

Thank you NoTimeForCancer. It will be weekly treatments the first infusion will include Taxol, Carboplatin, and Jemipli. Then every 3 weeks I will get Jemipli.

I was able to work full time throughout chemotherapy, something I could not have done if my job were physically demanding. Although I struggled with pretty severe peripheral neuropathy, I was not sick. It wasn't until that six-treatment chemo course was almost over that I started feeling weak due to low red blood cells. Everyone is different, but that first course of chemo five years ago was nowhere near as hard as I feared it would be. My real difficulty was dealing with the shock of the diagnosis and coming to terms with mortality. I am so sorry that your gyn frightened you and made you more afraid. If it helps you to process what has happened/is happening, your gyn/oncologist can explain to you that there has never been a better time to be diagnosed with a gynecological cancer, as research and new treatments are exploding.

Losing your hair will stink; at least it did for me. I almost didn't do chemo. A process called "cold capping" helps limit hair ivloss for some women. You care team should be able to explain how it works and discuss your options with you. It didn't work for me, and it was uncomfortable and expensive, but I am not sorry I tried it.

There is a lot of good advice contained in new and old posts to this discussion board. The only thing I can add — which lots of others have said — is that many people are going to want to help you in ways large and small. My advice is to let them. People who love you, and people who barely know you, will offer help that you may not even know you need. They will feel better by doing something, and you will likely feel better by allowing them to.

Good luck.

Hi jcf0513,

I am right there with you. I went into the ER in June for what my gyn thought was a burst cyst and ended up in the hospital for 3 weeks as they tried to figure out what what was going on. Went through a lot of "it might be cancer," "actually, it might not be cancer, " and then " oh wait, it is stage 3 cancer." As I'm sure you know, it's been exhausting, physically and emotionally. I was diagnosed around the same time as you and still going through the ups and downs of it all. I will say it does feel very confusing to have some people (including doctors) address it more casually and others more seriously. As hard as it is, I'm trying to ignore all of that and focus on one step at a time (which it sounds like you're trying too). I just started chemo last week and it wasn't as bad for me as a I thought it would be. I decided not to do the cold capping but I did get the cold mittens/booties which I used during the Taxol treatment. I think they've helped minimize the neuropathy (tingling/burning in fingers and toes). I'm also nervous about the losing my hair part, but we'll face that when we get there!

In terms of work, I'm on leave right now but am trying to figure out what I want to do. Luckily my job is very understanding and so I'm leaning towards taking more time for myself and maybe going back part-time soon.

I just joined this group and yours was the first post I read, so thank you so much for sharing. We're all on this rollercoaster together.

jcf0513, thank you for stopping back and letting us know how it is going. It IS a lot, and it sounds like you have found a good way for you to work through things.

I don't think I could have done a "physical" job while going through chemo either, and was fortunate not to experience any nueropathy but didn't know what I didn't know then! Some women have iced their hands and feet and that seems to help. Since you are not done yet, if you dig around a little here you might find information or maybe one of them will post.

I think it is helpful to find someone who is going through, or has gone through it, and why this site it a good resource. Please let us know how it continues to go and if there is anything we can help answer for you.

hey didyouknow213, not sure I have had seen any of your posts before so let me formally say "hello".

It is all pretty overwhelming, so everything you are saying you are feeling is legit. "why", I think, is a question we all search for an answer, but know you are not alone.

I would suggest asking about lymphedema now. Lymph node removal can lead to this, and I thought I had a blood clot since my leg was swollen but found out after a doppler it was lymphedema. I now have, like many ladies, a collection of compression garments which I was properly fitted by a massage therapist who specialized in treating the build up of fluid. It is a possibility, so maybe ask what to look for, but if you are concerned know who to call to verify it is not a blood clot. I don't say that to scare you, I tell you so you are more prepared.

None of us fight alone, so hearing you have a wonderful support group surrounding you is fantastic.

P.S. I hated losing my hair too.