Just diagnosed, horrendous symptoms

Hello AEW66

Welcome to the Online Community and the Vaginal Cancer group. 

I am sorry to hear of your diagnosis of cancer and I remember my own diagnosis (mine was in my womb) and how worrying it was. I hope that you do not have to wait too much longer for the Liverpool Hospital to be able to review your PET scan results and call you in. 

What would normally happen is that an MDT (Multi disciplinary team ) will meet and go through all your results and then call you in to talk about what has been found and what the treatment plan is. The MDT seem to usually meet once a week in most hospitals and with mine any phone calls would be the same day. 

I can understand how frightening it must have been to have such a heavy bleed. My first cancer symptom was a big bleed and it is very scary and can happen quickly. Do call NHS111 or even 999 if you have such a bleed again. I was told- do not wait and any bleeding that happened suddenly and heavily, any clots or any bleeding that soaked through more than one pad an hour would be considered needing immediate attention. 

The pain sounds horrible and if the morphine and the paracetamol are not managing it then also call either your GP or NHS111 for some advice. My GP was able to look at pain relief during and after diagnosis- while I was waiting for the oncologist to see me. Because of our anatomy the tumour could indeed be pressing on your rectum and bladder. This could be some of the reason that you feel so uncomfortable. Things I would be looking out for that would require you being seen straightaway would be if you are unable to pass urine or open your bowels. Your GP may also be able to prescribe a stool softener if the pain is happening when you are using the toilet. With my cancer I did find I had a lot of pressure type feelings and discomfort. 

The below link has a bit of information that you might find helpful while you are waiting to be seen. 

Vaginal cancer | Macmillan Cancer Support

We also have a Support Line (details below) that you can call if you feel talking things through would help. You can also speak to one of the nurses who will be able to help answer any medical questions. 

I hope this helps a bit. I hope you soon have answers but if there is anything else you need, please do ask.

Jane

Hi AEW66 and welcome to the group.

I feel what you’re saying…and you have my sympathy as I can very much understand where you’re coming from with this. I didn’t have vaginal cancer myself, but did have a tumour growing into my vagina with my cervical cancer. It caused significant large bleeds in the period up to my diagnosis which were very scary and caused a great deal of pain.

it’s very hard waiting for treatment to start, but it’s important for your team to have all of your results to ensure the right treatment plan is put in place. Once my treatment started, which was chemoradiation as my first line of treatment, my bleeding stopped after 2 weeks, and that was a huge mental boost for me. I hope it’s not long till you get the petscan results and your treatment plan is confirmed, but obviously in the meantime you would have to rely on going to A&E in the event of another big bleed. 

However, they will only be able to deal with the immediate situation you face, and it’s only the cancer treatment plan which would hopefully be able to alleviate this in the longer term. The plan you get will be determined by the petscan results so that your team has all the information it needs. 

The position of your tumour will likely be the reason for the pain you are experiencing, but if it’s becoming too difficult to manage, I’d be asking for an increased dose of pain relief if possible, and use stool softeners as opiates can have a constipating effect which adds to your discomfort. I didn’t find my gp at all helpful in prescribing pain relief as my cancer progressed, so I asked my gynae consultant who was quick to act. 

I’ve been through chemo radiation as a first line of treatment, but also had my vagina and rectum removed, along with my bladder amongst other things when my cancer recurred, so I hope I could be able to help support you through this from my own direct experience. 

This is a very difficult time for you when you haven’t had your stage of cancer confirmed, or your treatment plan put in place, but I found things became easier once I had all of this information and could focus on getting through it. I am more tHan 5 years from my original diagnosis, and almost 4 years from my surgery so I hope this can give you some hope. I know it feels so difficult when you are suffering debilitating amounts of pain, but I hope that things will improve once you can start treatment.

I’m happy to try and help from my own experience, and please feel free to ask any questions. 

Sarah xx

Thanks for replying. I’m on 5ml oramorph 4 times daily but have to use those doses for mealtimes as I  can’t eat without that and paracetamol. Also take 10mg slow release morphine. It’s just not enough. Consultant seems inaccessible, only seen her once. Will ask named oncology nurse at local hospital. 
how are you coping with the loss of your bladder/rectum/vagina, compared to how you felt when they first told you they were removing them? 
thanks so much, it’s good to talk to people who’ve come through this x

Thanks very much Jane. Yeah I’ll be more prepared for another bleed - got a big bag of incontinence knickers now!! 
Wouldn't bother with ambulance though as last week it was a 45 minute wait and even worse now (only know because a friend is a fire fighter and they’ve received a critical alert). Luckily I have lots of good friends and family nearby that can get me to the hospital in under 10 mins.
miserable situational round isn’t it? 

Hi again AEW66 

Try your nurse if you feel it’s too difficult to access your consultant-my nurses were very good and helped with several things I needed. Pain wears you down…I know that.. and it might be possible to make some changes to your prescription. 

I had a total pelvic exenteration-you can read my story in my profile-and I honestly didn’t think twice about it because the alternative was much worse. I knew it would be a possibility after an attempt at a radical hysterectomy failed.

I was actually very happy that surgery was an option, because it isn’t when the cancer has spread beyond the pelvis, so in truth I was ecstatic that it was possible!

I consider I cope very well-obviously I have 2 stomas now, but dealing with them has become second nature over the years and to be honest I find it difficult to remember my life before surgery. I have never experienced any complications from surgery, nor had to be readmitted to hospital, nor had to have any further treatment. 

Recovery was long and difficult, but I got there, but I do think that the psychological impact was harder to deal with than I had anticipated. I didn’t have any reconstruction surgery, so without a vagina life is very different. But I’m very glad still to be here, so I have never once regretted my decision to go ahead with the operation.

Sarah xx

Thanks for sharing. Sounds like a lengthy surgery that I may not be a candidate for, due to having COPD. 
I guess I’ll have to wait for the treatment plan. 
Great to hear how well you’re doing. Can I come back to you if I have more questions? X

Hi AEW66 

Yes, you can certainly come back with any questions as it can be quite difficult to find others with vaginal tumours who post about it. My surgery is typically only done for a recurrence of cancer-could be different kinds of cancer, like vaginal, cervical or bowel for example and is not a first line treatment at diagnosis. I just wanted to answer your post with my own experience to say I could understand  how you were feeling, as this cancer is quite rare and I wanted you to be able to connect with someone who has had a vaginal tumour.

Your staging will determine the treatment you will have, but typically surgery is done at early stages only, and your tumour size could mean surgery would not be possible. It is more likely that you would have some combination of chemotherapy and radiotherapy. 

I have had the chemoradiation, and the chemotherapy used in your cancer would be likely to be the same type as mine. Depending on your staging it might be preceded by a different chemo first. Everything is dependent on the petscan results to see what information comes from that, and it’s horrible waiting for things to come together, especially when you are in so much pain.

In the meantime if you have a big bleed and need to go to A&E, I’d not wait for an ambulance since you are close to the hospital and can get taken there quickly. It will be much easier to get a lift. And do give your cancer nurse specialist a ring tomorrow to discuss your pain so  she  can chat this through with your consultant. Being on oramorph and morphine, it’s more appropriate for your consultant rather than gp to make decisions about any changes if they have prescribed this for you. 

This limbo time of waiting for things to get going is really difficult, so I hope it’s not too long before everything is finalised for you. Many of us find things start feeling better once we can focus on our treatment, which is daily on weekdays if you have radiotherapy. 

Sarah xx

Yes it’s hard to find info as a primary vaginal tumour is so rare.  And yes it’s a large tumour. The MRI didn’t show any spread to anywhere else except there are some suspicious right sided iliac nodes. my cervix is healthy and cancer free. The gynae consultant said the outcome of the MDT would likely be a recommendation for surgery but as you say, that depends on Pet scan results. I’ve heard of some people having partial vaginectomy or total vaginectomy. I assume those surgeries would not take as long, therefore less risk to someone with COPD. I guess I need to research the best ways of coping with chemo/radio side effects. I’m losing weight already because every time I swallow food (or anything thicker than water) I’m in a lot of pain, so have to eat half hour after pain meds and can only eat a small amount at once. 
thanks again for this 

It is rare to have this, but strangely enough I’ve personally known 2 ladies with a primary vaginal tumour over the years outside of this group. 

Effectively a total vaginectomy was part of my overall surgery because they removed everything there. But the mdt will decide based on the location of the tumour and all the other factors of your diagnosis, and any kind of surgery should be shorter than the type I had. You are carefully assessed before any surgery to ensure it is as safe as possible, and you do meet your anaesthetist in advance of any operation. 

I didn’t have issues with eating with my cancer at all but definitely little and often was better for me. I couldn’t face large portions of anything. When you have chemoradiation, the chemo part was designed to enhance the radiotherapy, which was the main part of treatment in my case. I was never sick or nauseous with chemo, which was Cisplatin, and which doesn’t  make you lose your hair. You would be encouraged to try and maintain your weight at the start of treatment as the radiotherapy is carefully calculated to target the tumour and  fluctuations in weight can affect this.

You will be advised of all the possible side effects of both chemo and radio when you sign consent for treatment, but it doesn’t mean you will have any or all of them so it’s just a case of seeing how it goes if you have this treatment. Some ladies have no issues, and some find it harder. 

My side effects didn’t kick in till 3 weeks into my treatment, and tiredness was cumulative as things went on. I did have diarrhoea and cystitis, but these are common with pelvic radiotherapy. I just told the team and got help with both-Immodium and creams to make things easier. These side effects eased off within a couple of weeks of treatment ending and things went completely back to normal for me with no lasting effects at all. You just need to let your team know if you are having any issues. 

Sarah xx

My Pet scan results came back: no evidence of cancer anywhere else in the body! Great news! My case will be discussed at the Liverpool Women’s MDY next Wednesday. How long after that do you think I can expect to be contacted? And how long after do you think I can expect to start treatment? Getting desperate because the tumour is now pressing on bladder and bowel, causing problems, and obviously I’m at risk for another big bleed. 
I feel somewhat better though, knowing there’s no cancer anywhere else, more hopeful. 
My GP has just increased my pain relief (not by much, apparently morphine has to be built up slowly). How long ago did they declare you cancer free? X