Scared

I had been having some symptoms this week that I thought may have been a UTI, or possibly some incontinence issues so I phoned my cancer nurse 2 days ago. They fit me in this morning for a checkup. They asked me some questions and the doc didn't seem worried, thought it may just be a uti. Then he did the exam. After, he said "I'll give it to you straight," never a good start from your dr. He told me it is either vaginal necrosis or my tumor has come back. You can imagine my surprise, when I thought I was going for a uti and some antibiotics. I'm now waiting on them to schedule a biopsy, hopefully for Monday, to see what's going on. I only just finished treatment 1 month ago, 25 external RT, 5 cisplatin and 4 rounds of brachytherapy. At my last brachy a month ago they had told me it was 95% responsive. And now this. I am so terrified. He said my tissue in there did not look good at all but he could not tell which it was by looking. I have cried and cried and screamed loud today. On top of everything, my father was put in the hospital on a breathing tube today for pneumonia and sepsis.  Ive been feeling so well after treatment which makes this so hard to believe- I went back to work 10 days after treatment and everyone has said how good I look, and I have felt so much better. I cant believe that was all a lie really. I know I should try not to worry, I have all weekend to wait before I can even get the biopsy. But honestly I am terrified. I have stayed positive this entire time and convinced myself I would beat this thing. Has anyone else had their doctor tell them similar so quickly after treatment? My symptoms were a heavy intermittent yellow discharge, frequent urination, and some incontinance, that's it. 

I'm so sorry you are going through this. I'm surprised that only one month out of treatment he has said that. Surely you are still healing in that area? Your treatment is still working (as far as I'm aware) which is why they wait till 3 months after treatment to scan.

I suppose he is being extra careful which is a good thing xx keep us informed x

Hi Phileepa, 

Thank you. I thought the same thing. My nurse also told me not to worry all weekend, she said the same- the doctor is just being cautious. Hoping and praying it's not back. I will let you all know when I find out.

Amy

Hi Amy

Im sorry you are having this worry, Im new out of treatment too (2.5 months) and agree with Phileepa it’s very early days yet, I was told by my consultant that even the 3 month scan may be inconclusive due to continued cell changes so hope too he is just Showing extra caution to make sure all is ok. Such an additional worry when you have so much going on. Every twinge is sending me into a panic at the moment, this waiting stage is horrible and hope next week your mind is put at rest x

Hi WeepingWillow,

Thank you for your kind words. I am really hoping that is all it is, just him being extra cautious. My mom thinks the same thing. I know just what you mean with all the aches and twinges. Waiting game is scary. Congrats on finishing treatment! Wishing you an all clear soon!!

It does seem very early days. But worse case scenario, even if It is back it isn't the end of the treatments on offer. Good luck with biopsy.

Karen x 

 

Thank you Karen. I have read your posts and I think you are very inspiring! 

Oh thank you that's nice to hear. Lots of amazing women in here.

I hope all goes well. Do keep.us posted. So.many disappear when it's all ok and we are left wondering.

Karen x 

Well I saw my gynecologic oncologist yesterday. He didn't end up doing the biopsies yet. Apparently there is a very extensive amount of necrosis going on, so he wants to do a few biopsies under anesthesia. He did say there is a suspicious nodule on my cervix. So we will see. But he did agree with all of you. It is still very early, my treatment isn't even finished working, and if it did come back already, it's not the end. There is still exenteration, he also mentioned immunotherapy if it has moved elsewhere. He also said it's not a rush, so if they dont get me in before the holidays not to worry. So I'm going to stay positive and enjoy the holidays! I'll update once I have the biopsies. Thank you again for your advice and support, ladies. This group is so wonderful.

Xoxo Amy

Hi Amy :-)

I've been off the forum for ages and this is the first thread I have read, so from your first post until your latest I have been keeping my fingers crossed for necrosis. I know, not the kind of thing most people keep their fingers crossed for but we are not most people, we are special :-)

I would imagine that exenteration doesn't come until much, much farther down the line. I don't know your history nor what stage you were at before diagnosis, but I suspect that the absence of surgery so far points to 2b or greater?

Wishing you all the best and sending hugs - scared isn't what anybody wants for Xmas

(((((HUGS)))) 
Be lucky :-)
Tivoli

Hi Tivoli,

Thank you for commenting. It is so nice to see those of you that have been on this forum a long time still being here and supportive for us newbies! Your posts/ comments, as well as Phileepa's and Pete's dragon and several others have gotten me through some tough times. Thank you for that. Anyhow, I am 2b squamous cell with + lymph node involvement. My oncologist has mentioned pelvic exenteration as a possibility if it doesn't scoot on outta here in the next few months. He also mentioned immunotherapy if it metastasizes. But, like you, he says all of that is far off and not to worry about it yet...

Merry merry Christmas to you, Tivoli, and to every single lady on here. Heaven knows we deserve it! :-) 

Xoxo Amy

Well I finally get my biopsies under anesthesia in 2 days. However, in the last few weeks the pain has become UNBEARABLE. I'm assuming it's from the necrosis. I was just wondering if it's normal for it to hurt this much? I have been barely able to function at all the last few days and eating and sleeping has become a joke. Feeling down and scared.