New here and feeling lost!

Hi Noo Noo,

I'm new here too. So sorry you are having to go through this.  It's such a shock when we get the diagnosis.

At first, the Doctors thought I had a Bartholins gland problem too. I think it's easy for the medics to get the initial diagnosis wrong because vulva cancer is quite rare, many Doctors probably don't ever see cases of it(?). 

After several courses of antibiotics didn't work I was sent for a check up at the local hospital & was told there was nothing wrong, perhaps just a minor infection & was sent away with another course of anti biotics which of course didn't work. Thankfully my GP pushed for me to have an appointment at the Gynae unit of the main hospital within 2 weeks & thanks to a brilliant Doctor there who immediately suspected that it was cancer, I had a biopsy straight away.

After having an MRI, CAT scan then PET scan they discovered the vulva cancer was too big to be operated on, but thankfully it hadn't spread to the lymph nodes.  Unfortunately the scans also showed I have bladder cancer as well.  This year I've had 6 weeks of chemo,6 weeks of radiotherapy & a 6 week induction course of immunotherapy for the bladder cancer, which turned into 9 weeks as I kept getting infections. 2 operations to remove bladder tumours, (another 1 booked for next week) & I'm due to start the immunotherapy maintence course in the New Year. 

At the start of all this it felt like the worst nightmare & I didn't know how I was going to ever get through it. Feeling lost is a good way of describing it. 

But after this year I realise that it's all about taking 1 stage at a time.  We really don't know how strong we are or how much we can handle until we have to deal with this horrible disease & all the treatments involved.  

Each time I've had a pre-op appointment the operations have been 2 or 3 days later, so I hope your operation will be over & done with very soon & that everything goes well for you. . 

Hi Sirius,

Thank you for sharing  your story.

I'm so sad that you have been though so much already!

Taking 1 stage at a time is good advice, I try and distract myself from the dark thoughts by keeping busy then I find when I'm with my daughter she is so upset and my emotions become overwhelming.

I have always been very active and worry about the impact it's going to have.How have you found it has affected your life?

Hi Noo Noo, 

Thank you for your reply. 

I am hopeful that as your tumour has been sugically removed, taking out your lymph nodes is an extra precaution they are taking to ensure they have all basis covered which will help stop it from spreading elsewhere. 

I think the hardest part is the thoughts in our heads, the constant worry & not knowing what will happen next. It's like a little black cloud always hovering overhead. Not having anyone to talk to has been 1 of the hardest things for me & as in your case, when you talk to your daughter, understandably she is worried for you & gets upset & this is hard for you too, no one wants to be the source of worry or sadness to their loved ones. 

All through my treatment this year I have found some comfort visiting this forum just to read other peoples experiences, tips & advice, even if I couldn't join in the conversations myself. 

I am doing ok all things considered. So very grateful for the amazing treatment & care I have received from the NHS & the wonderful MacMillan Nurse who was assigned to me during the vulva cancer treatment. She was awesome & helped me get through it all, both with the physical & emotional issues. 

When I saw the oncologist for my post vulva cancer checks in July, he said things were looking good so far. I have to see him again in January & am hoping things are still on the right track & that an operation will not be required. 

I have to go to 3 different hospitals, 1 for the vulva cancer treatment, 1 for the bladder cancer & another for scans. 

I had a CT scan a few weeks ago & have just got some encouraging results from that. The scan could not detect any sign of the cancers being present. 

Scans obviously can't always give a definitive answer, so this morning I've been to hospital for a procedure called a TULA, which is basically having a camera inserted into my bladder & some more biopsys taken & being zapped by a laser to correct damage caused by the Radiation treatment & BCG.  I've been dreading it, (the thought of being awake during the procedure mostly), but it was over & done with within about 25 minutes & I could go straight home, so it wasn't as bad as I'd anticipated, (although I'm not looking forward to the local anaesthetic wearing off). 

I've had 2 similar procedures this year, but under general anaesthetic which meant an overnight stay in hospital. The bladder cancer had managed to start regrowing in between those 2 operations. 

Today the consultant who did the TULA said that he could see no clear signs of cancer in my bladder, but I'm a bit of a mess inside due to the Radiotherapy & BCG. I should get the results of these biopsys in a few weeks at which point they will know whether I will need bladder surgery. 

Once the healing process had taken over, the vulva cancer treatment has not left me with any problems.  The soreness & pain it was causing prior to all these treatments has gone & the side effects of radiotherapy is gladly a distant memory.    If it wasn't for the MS (which is the thing that has been truly life changing for me) & bladder cancer, I think I would be feeling just fine, so I really hope that when your operations & cancer treatments are over & you are fully on the way to healing, you will be feeling so much better.

I will be thinking of you & wishing you the very best.. 

Thank you Sirius for your detailed reply,

What a lot of hospitals to visit!! it must be exhausting for you and coping with the MS.

I am encouraged by your positivity as you have and are still going through so much.

It is good news that things are looking good so far from the vulva oncologist and Ibreally hope you get some good news about your bladder.

I too will be thinking of you.

I heard today that my lymph node disection will be on Thursday this week. It was a bit of a shock, however, it doesn't give me much time to be anxious as I'll be busy organising things tomorrow.

Take care and keep in touch x

Hi Noo Noo,

I'm really pleased that you have your lymph node dissection booked for Thursday. That will be another stage ticked off the list before Christmas!  I've had a few last minute appointments sprung on me this year & you are right, it doesn't give you time to get anxious & that's always good.  

I hope everything goes really well & will be keeping everything crossed for you. It will be all done before you know it & then you can rest & get on with the healing process at home. 

When you are out of hospital & are feeling up to it, please let me know how you are getting on. 

I will be thinking of you. X

Hi Sirius,

Yes I will let you know how I get on.

I just want to thank you so much for talking to me, it has helped my anxiety so much.

You sound such a strong and inspirational person.

Take care of yourself x

Hi Sirius,

My lymph node op planned for last Thursday was moved to Saturday then cancelled          I have had no new date as yes.

I am very disappointed and worried ️

Noo noo, I'm so sorry to hear this. At the start of my treatment I had several cancelled appointments at short notice for scans, blood tests & the start of the chemo & radiotherapy treatments.were cancelled twice, so I know how that feels. I forgot about the false starts at the beginning & how disappointing they are.  

I really hope they get you re-scheduled quickly.   I expect this must happen to a lot of people & it is really frustrating. 

They will be working on rearranging things. I hope it's over & done with soon. I know waiting is hard, but hang in there,   hopefully they will let you know very soon X  

Hi Sirius,

It is a long time til we last spoke and I was wondering how you are and hope you are well

I had my lymph node disection on the 21st of December and went home the following day with drains in situ feeling well.

Unfortunately a blood vessel was bleeding in my groin which developed into a large haematoma, I became very unwell on Christmas night and was readmitted on Boxing day with severe anaemia and septacaemia. I was so poorly but the staff in resus were fantastic and I was so grateful for their quick response and skills.

I spent 2 weeks in hospital having, blood transfusions, iv fluids iv and iv antibiotics.

It has taken until now to feel much better, I pick up coughs and colds really easily but hoping as the weather improves so will I.

Best wishes,

Noo noo

Dear Noo Noo, 

So sorry it's taken so long for this reply. Was going to ask how you were doing after Christmas, but I thought you'd be busy recovering & the time has just gone so quickly since then. 

You poor thing! What an ordeal! As if going through the operation wasn't bad enough. I know they wanted to get you in & out before Christmas, but sometimes I think if they kept people in just a few days to make sure all was well, they could avoid having to deal with post op problems.  I hope that by now you are well on your way to full recovery & are feeling so much better. 

Do you have to have any more treatments, or (fingers crossed), do they think you will escape having anything more done? I hope so. 

This journey is so tough! 

I thought I was doing ok, although the BCG treatment has been really difficult, the side effects are hard to deal with, I was plodding on ok, just getting through each stage & looking forward to getting the next one over & done with. 

The CT scan I had late last year was encouraging, but unfortunately I went in for another cystoscopy 2 weeks ago to check inside the bladder & they couldn't do it as the treatments have caused so much damage, they couldn't get the camera in to have a look around. It was so disappointing, especially as it now means my BCG treatment has been put back at least a month, (if they decide I can continue with it) & I now have to have an MRI in 2 weeks time & will have to have another general anaesthetic to have the procedure, as opposed to a quick 10-15 minute procedure as an outpatient. 

I've got 2 appointments at 2 hospitals on the same day next week. 1 is for a pre-op which is such a pain having to travel an hour and a half from 1 hospital to the other, just to have a blood test, weight & height check at 1 & a check up at the other. The procedure will then be carried out at another hospital.  Having to go to 3 different hospitals is just too much sometimes, even if the staff are great. 

I have to psych myself up for every appointment, just thinking to myself "I just need to get through this step, then it's another week closer to the end of the 3 year course of treatments," so when things go wrong, it's just so hard to see an end to it.

I know I shouldn't complain, because some people aren't lucky enough to have survived long enough to be going for treatment & endless appointments, but some times the never ending cancer treadmill really gets me down. 

Finding it depressing that the only time I've left the house since before Christmas is to go to hospital appointments. I hardly left the house all last year due to having chemo & radiotherapy & the after effects of those. 

Sorry this all sounds a bit miserable, I'm sure when I get the next bit over & done with & they can see what is going on after the MRI & what can be done about it, if anything, at least I will know what's happening.