Vaginal cancer

Hi Genie girland welcome to the group.

I’m sorry to hear that your biopsy has found cancerous cells and that you are in this limbo period of waiting for more information. It’s always a very difficult and scary time waiting to find out more. 

I pop into this group from the cervical cancer group, as although I didn’t have vaginal cancer, I did have spread to my vagina which eventually led to major surgery. 

The main piece of advice I would give you is to take things a day at a time, and try not to think too far ahead. And please try not to use Dr Google, as it tends to increase anxiety and fear without giving any reassurance. 

The mri and Ct scans will give your team a fuller picture of what is going on, so that appropriate treatment can be planned, and all of this takes a bit of time unfortunately. 

Please come back and let us know how you are getting on, and if we can help with anything. 

Sarah xx

Hi SarahH21

thank you so much for your kind words. I’m 53 and never went through anything like this in my life before. I’m off old where whenever you got the big C word then it was a death sentence. I know that there are many treatments available but it’s such a scary place. 
Its the waiting that is hard. Wondering what they will find when the scans are done and what’s going to happen next. It’s just nice to know that there is a place where I can go and vent all my worries 

I’ll keep in touch and let you know how I’m doing 

thanks again and take care

Genie girl

I was 56 when I was diagnosed-I’m almost 60 now. And I well remember cancer always being referred to as the big c, and talked about in hushed tones when I was a youngster. I don’t even give the word a capital letter, and always call it what it is-cancer.

I think it’s the scariest thing in the world to be told you have cancer-I just froze when I was told, and felt this rush of adrenaline-fight or flight I suppose-but I was very calm, didn’t cry or anything, just sat and listened to this jumble of words coming out of the gynaecologist’s mouth. 

The waiting is a very difficult part of the process-in my experience, and I talk to a lot of women who say this too, once you find out what you’re dealing with and how they’re going to treat it, you start to feel better about everything. Because you have a plan, you feel a little bit more in control and can face what’s coming. 

Treatments nowadays can be so effective, and have come on in leaps and bounds since the “old days”. This group tends to be quite quiet since vaginal cancer is quite rare so that’s one of the reasons I check in here. I feel that although my cancer was cervical, I have had my vagina removed so I have much in common with the ladies here. The scans will give the size of the cancer and location and will check for any spread. It’s impossible to predict what they might show, but there will be a plan to deal with whatever comes up. That’s the main thing to hold on to. I thought I would have a hysterectomy, but the scans showed my cancer was too advanced for surgery so I had chemo and radiotherapy. So things can change, but your team will plan the best treatment possible.

You can vent here and post all your fears and worries-you have a safe place to say whatever you need to say. Definitely keep in touch Genie girl and there will be help and support for you here in the community.

Sarah xx

Hi

i notice that I said I was 53. Don’t know where that came from. I’m 58. Born in 1964. So just shows that my brain is all over the place. 
I would agree with everyone else. The waiting is hard. I feel that my lump is now getting bigger but it’s probably my imagination. My lump is on my vaginal wall and is makes  me pee so much cos it is pressing on my bladder. I have been on HRT for about 5 years so in my mind this is getting some of the blame to. I’ve been married to the same man for the last 35 years very happily and just 8 months ago he got diagnosed with occupational Pulmonary Fibrosis so I feel we have got a lot in our plate. 
how do you cope with the uncertainty. Are you cancer free at the moment. Can you ever be cancer free once get it. I just don’t understand. It alway seems to come back. I know I’m sounding negative but that just how I feel at the moment. I wanted  my life to go smoothly. Enjoy my husbands retirement and live happily ever after  

talk soon

genie girl xxx. 

Oh, I wrote a reply to your last post which seems to have disappeared! That’s so annoying! I was 56 when I was diagnosed-born in 1962 so I‘m almost 60 now, everyone will tell you that the waiting is the hardest part. Once you know what the scans say and get a treatment plan, it does become easier because you have a plan and you can regain some control. 

When I was a youngster, I remember how cancer was talked about in hushed tones and called the big c. I never give this disease even a capital letter and and I always call it it cancer, because that’s what it is. And it’s just a word.

You may be imagining your lump is growing, and that’s a result of your fear just now. It’s the not knowing. This is so hard, and you have so much going on with your husband having his diagnosis. That’s extra tough, 

Cancer free? Well, who knows? No-one can ever guarantee that in my opinion. My cancer was all removed in my surgery 2years ago, but there are never any guarantees. My surgeon said she removed all the cancer with clear margins but it’s still no guarantee of anything. I feel well, I live my life, but I have no unrealistic expectations and I never use the words remission or cure. It’s just being realistic. I’ve been through my cancer twice, so I do expect it to come back, but while I feel well, that’s enough for me. I’ve survived 2 years since my surgery when I wouldn’t have lived without it for very long. So I just appreciate every single day 5hat I wake up. 

Sarah xx

Hi Genie Girl...how are things going?  Have they sorted out a treatment plan yet? x 

Hi shelley2020

nice to hear from you. I had my pet scan done last Wednesday 18 May and got results back that it wasn’t anywhere else apart from my lymph nodes in my groin so I took that to be a bit of good news. 
my lump is very close to my bladder so that might cause some problems but my gynecologist said that they were hoping to operate on it to remove it with the help of the urology team. But it is still being discussed so I’m still in the dark about what is definitely happening. 
the waiting is the hardest part. Sitting is becoming a problem as it’s so large now and so painful to sit or walk so now mostly lying down. 
just want this bloody  thing gone from my body. 

take care xxxx

Hi genie girl

I'm Amanda, please click on my name for my history. I have vaginal tumours as further (quick) spread from endometrial cancer. 

I am currently on chemotherapy and have had radiotherapy 5 sessions for symptom control. I don't want to get ahead of myself here but I can tell it's working as my symptoms are improving. 

I currently sometimes still have to go upstairs on one leg, I have bought seat pads for chairs and have one in the car. I have bought a shower stool as can't stand on left leg to wash right foot. I've bought a walking stick as I was limping bad and was affecting my back.

I hope this information makes you feel less alone and gives ideas to improve your comfort.

Take care,

Amanda x

Hi sistermoon

nice to hear from you. You sure have had a time of it. Glad you are starting to feel a bit better. 
My cancer has now been diagnosed as Vulva cancer. 
I’m in the process of receiving immunotherapy. Having 2 drugs at a time for 4 treatments   
im hopeful to be having a Pelvic Exenteration soon but need to have my lymph nodes in my groin biopsied first to see if it’s spread anywhere else. 
can’t say I’m looking forward to the major surgery but if gives me a chance at life I’ll take it any day of the week. 
Do you know of anyone else having this type of surgery. I’ve heard it’s not very common. 

take care. Lots of love  

Hi Genie girl

I replied on your post in the vulva cancer group as I’ve had a total pelvic exenteration.

Sarahxx