First post - newly diagnosed SCC deep distal pelvic vagina

Hi I had sage 3a SCC Bartholin gland cancer found in Nov 2023. Very rare See my profile. I too was offered a wide local excision surgery. I didn’t want the surgery and the surgeon didn’t want to do the surgery either. My treatment was 5weeks of chemotherapy and 6 weeks of radiotherapy running at the same time with 4 treatments over 3 days of interstitial Brachytherapy 2 weeks after Chemoradiotherapy ended. It was a very unpleasant experience but from my point of view better than the alternative. 
I’ve just had my 6 month post treatment MRI which was clear of any signs of cancer. 

Thank you for your prompt and really helpful reply. 

Delighted to hear that you're clear. 

The cancer nurse today on the phone said "information is your friend" ... So I'm going on Monday and the surgeon has a long and distinguished career so will listen (with lots of questions!). 

Thanks again and best wishes 

Hi Ab0104 and welcome to the group.

I’m sorry to read that you’ve been diagnosed with something described as rare-no-one really wants to be unique when they’ve been diagnosed with cancer! 

My cancer was cervical but growing into the vaginal wall when I was diagnosed in 2018. I  had 32 sessions of radiotherapy for my cancer at diagnosis (with chemo) and had my vagina removed completely as part of larger surgery later when it recurred. I’ve not had any experience of vulval surgery, so I don’t know how that would affect things like horse riding, but I had no lasting effects at all from radiotherapy-my side effects during treatment were diarrhoea and radiation cystitis, and these subsided within a couple of weeks of treatment ending. I did not suffer from lymphoedema either. 

What I can say is that I can ride a bike and would be definitely be able to ride a horse after my particular surgery, so don’t rule out being able to ride again at this stage!

It’s absolutely your right not to go ahead with surgery, and that’s a very personal and individual decision. But I would recommend you talk through the implications with your consultant fully before you decide. You mention quality over quantity, but need to take into account that quality of life might not be so great if the cancer progresses and you are suffering pain. A wide local excision might remove the cancer completely and allow quality and quantity. It’s a big decision to make.

Vaginal cancer is rare, so this is one of the quieter groups in the community. I am here because although my cancer was different, I have had vaginal surgery.

Sarah xx

Yeah the more information you have the better you understand your options. I researched Bartholin gland cancer for a year cos I didn’t have any others option. I knew it was more than a cyst. As I had had cancer before and knew my body was fighting it again. I still may need the surgery if it comes back but for now at least it’s gone. Read anything you can and write down your questions for the specialists. 

You take care and fingers crossed for other options on Monday x 

Hi Sarah

Thank you. 

It turns out I can't have any surgery at all until cardiology see me again about the abnormal echocardiogram and get whatever that is under control. Not sure if that means all treatments are on hold.

Will see Consultant on Monday for gyne then wait for next steps on cardiology so I don't think this will be resolved in haste.

I promised myself I would get through the next month of funerals before making a decision as I'm probably not ready to do so. 

I already new it was rare so that wasn't a problem... 

Thank you for your reply x

Oh my 

Today did not go as expected. 

The Consultant in Oxford examined me and the lump is 2 or 3 x the size he had been expecting/and I had been told. 

For now another MRI and urgent calls into cardiology locally as they need to investigate further under general and I cannot have any op at all till heart issue diagnosed and under control. 

Stage and grade unknown Color rectal will have to be involved. Cancer nurse v kind and Maggies Centre nearby wonderful but I'm in shock. This is far worse than had been thought. 

Fortunately I'd taken all the cardiology paperwork with me for them.

Met some lovely people in waiting area! 

Hope everyone else OK x

Oh Ab0104 

I’m sorry that your appointment threw up more issues for you. It seems surprising that your PET CT scan didn’t give a more accurate result on the size of what this is, so no wonder you were shocked.

Your heart issue will need to be resolved before anything further can be done, to see what the problem is there. My father in law has a heart issue and cardiology were fully involved before agreeing to his cancer surgery last year-they were very thorough before the surgery finally went ahead. Hopefully as your appointment is urgent, you will be seen soon, and the mri will give more information too.

I also had a colorectal surgeon involved with my gynae team, and a urologist, making up my surgical team on the day of my operation. I saw it as getting the best and most experienced team gathered together to do the best possible job using their expertise in particular areas. However, I did have to make decisions quickly in my own case as for me it would have been impossible to have surgery at all if things had been delayed and my cancer had spread any further. 

I’m sorry to read things are potentially going to be more difficult for you and the waiting to find out more is a very difficult time. I hope you have a good support system around you-family, friends? Please keep in touch to let us know how you get on.

Sarah xx

Hi

Thaniks Sarah,

Worryingly - the Consultant Surgeon at the Centre of Excellence (or whatever the regional hub with multi speciailsms is called - he's in Oxford and very highly regarded of longstanding) was very surprised too. 

I don't know why it didn't show on the PET CT, previous MRI or for at least half a dozen people (probably more) that have examined me - inc under General in Sept since the last MRI in May. He said the MDT meeting last week gave no indication and knew I'd been told a much smaller size - as he had.

This Consultant wants the MRI done at Oxford Uni Hosp and they rang at nearly 6pm tonight to book for Thurs first thing. One of the secretaries has also said they've written to Cardiology already. As you say, they can do nothing without their go ahead.

The heart thing is recent - I had an interimittent LBBB (electrical thing left ventricle) happen under general for the biopsies and since an abnormal echo. Odd because I don't smoke/I'm not overweight/don't drink alcohol/never had high cholesterol and very active ... historically low BP and pulse so I might be a walking medical mystery.

Consultant also asked if I'd ever had ulcers pre this (large) lump - again no. I don't have preindications for the heart or cancer.

Trust me to be contrary! Tut - this clean living is CLEARLY not working at all :-) 

Thank you for being so kind and supportive.

I haven't told anyone yet - I'd like to know exactly where I stand and what options for everything rather than leave others in limbo. Also my family are all abroad which makes it far worse especially for them. 

As you say - glad there are lots of specialists about. 

Best wishes

P.S. I specifically asked if he knew what the stage or grade was and Cons said no he didn't know yet. They want to do another exam - not surgery - under general asap, I'm pretty sure they think it's spread deep/wide so it will be another anaesthetic WHEN they get the go ahead. Unfortunately this electrical circuitry thing means it looks like you're having a heart attack/event when under GA even if you're not and really complicates matters. 

How difficult for you, having this heart issue identified now, but at least it has been and can now be further investigated. It was certainly challenging for my father in law to undergo a long operation under anaesthetic, but he came through his surgery (bladder and prostate removal) and did recover and that was more than a year ago now. 

I didn’t tell people when I was going for scans and biopsies, or even when I was first diagnosed, so I can understand wanting to know more before telling your family. I waited until I had my stage confirmed and knew what my treatment plan would be. I didn’t see the point in saying anything before then, as it would only have led to questions I couldn’t answer and that would have caused more worry for everyone. 

It is difficult though, not having anyone to talk to or share your worries with. I decided just to listen to my doctors, and do what they told me to do. Even now, while I am ok with sharing things in an anonymous forum like this, no-one outside my immediate family knows what cancer I had or my later surgery and what it entailed. 

Having the exam under general would mean you aren’t under anaesthetic for long, but will enable your surgeon to have a much better idea what’s going on. I went for surgery when my cancer recurred (to have a salvage hysterectomy) but scans had not picked up the radiation damage they found when I was opened up. Scans looked fine, but my organs were badly stuck together so surgery wasn’t safe and I was stapled up and sent home. I learned that scans, which I had assumed showed everything) definitely do not! 

Hopefully then, along with your mri this week, the type, stage and grade of the cancer can be established which will inform the treatment. I hope that being in a centre of excellence will mean your surgeon has the experience and knowledge to provide the best and most appropriate treatment for you-things seem to be moving quickly now after your appointment.

Sarah xx