Vaginal Cancer

Hi Healed and thanks for putting this further post on the group.

I hope that the petscan will give your doctors more information, especially regarding the lymphnodes. I’m not sure whether you will get more replies if you post this in the cervical cancer group, as from what you have said it sound like you have a diagnosis of cervical cancer rather than vaginal cancer.

Have you had any biopsies done to confirm which type of cancer it is? You haven’t mentioned a stage for your cancer, but I’m assuming that will be based on your petscan results and whether lymphnode involvement is confirmed. If your plan is chemoradiation, that sounds as if surgery is not an option for you. 

I had cervical cancer but it was growing into the vaginal wall, so my treatment, which was chemoradiation, was based on it being cervical cancer and not vaginal. I had radiotherapy daily, and chemo once a week, which was Cisplatin. Do you know if this is your planned chemo? 

I see that you are in the USA, and it’s fine to be with us here, but just so as you are aware, Macmillan is a UK based charity and cancer treatments and processes will be based on UK protocols so you may see some differences. For example in the UK our health service provides our scans and treatments with no charge and we don’t need to have insurance for this. It means we don’t need to get approval for scans from an insurance company and we don’t pay for our health care system. 

I think it would be really helpful if you can confirm exactly which type of cancer you have to be sure you can connect with other ladies on the same path. Many of us in the cervical group have been through chemoradiation and will be happy to share our experiences of how our treatment went. 

Sarah xx

Well they only saw it on the vaginal wall but doctor said she is sure the cervix is effected.  The MRI showed swollen lymph nodes.  She said iitost likely started from cervix but they call it where they see it for now.  

Hi Healed 

I hope you’ll get answers soon-normally a biopsy is one of the first things done in identifying cancer, and that will establish the type of cells which will then determine the type cancer. Have you had a biopsy yet? 

Sarah xx

It was.  

Hi Sarah did you lose your hair on cisplatin ? I am having this chemo for vaginal cancer 

many thanks j

Hi Herewegoagain 

No, I had no hair loss on Cisplatin. Some people report that their hair thinned a little (mine didn’t) but I do t know of anyone who has lost their hair on this chemo. I was told by my consultant I wouldn’t lose my hair, so that was a relief.

Sarah xx

Thank you Sarah one less thing to stress about , did you have both internal and external radiation ? Which was the more evil of the two ? Any permanent issues ? It’s very hard to find people who have been diagnosed with this cancer to ask them questions 

I had external radiotherapy along with the Cisplatin, and was scheduled for brachytherapy after it finished. However I wasn’t able to have brachytherapy as I suffered a pulmonary embolism the night before I was due to be admitted. I had extra doses of radiotherapy as a boost instead, so had 32 in total. 

My side effects from radiotherapy kicked in at three weeks into treatment and I had cystitis and diarrhoea. I was given help with both of these-medication and creams. Everything cleared  up within a couple of weeks of treatment finishing, and I had no long term issues at all. 

I did find myself very tired during radiotherapy-I definitely had to rest more. I had quite a long trip to hospital-1.5 hours each way-so that didn’t help! 

Sarah xx

Thankyou Sarah it’s all very nerve racking and when you hear the potential side effects it’s quite confronting , I am only 48 and would not like to live with ongoing incontinence and bowel issues , having early menopause will be bad enough dealing with xx

Yes, absolutely it’s scary seeing all the possible side effects in black and white when you sign consent forms, but the best thing to remember is that they are possible side effects and not certain. 

I’ve seen ladies go through this treatment with no side effects and some like myself get affected for a short time. We need to be told of potential side effects in order to give our consent, but it doesn’t mean to say we will get any or all of them-we are all different. I certainly had no lasting effects from my treatment.

When you have your treatment, I can tell you what helped me cope with those I had if you have anything similar. When are you starting? 

Sarah xx