Hi Community,
Two days before Christmas, the doctors found a 2cm lump in my mom's vagina. They biopsied it and Christmas was ruined for me, waiting and waiting. My mom had spotting and unusual post-menopausal bleeding for 8 years. They did Pap tests, endometrial biopsy, and found nothing. They assumed it was age-related (she's 75).
The biopsy came back as squamous cell carcinoma.
I have resorted to google which tells me that vaginal cancer is usually a secondary cancer and spread from somewhere else. It's killing me to think she has more advanced cancer.
We have to wait 4 weeks for the Pet/Cat scan. Can anyone share experiences with me about their experience with vaginal cancer and whether it was the primary cancer or not?
Are survival rates higher than what google says (50% last 5 years)?
Any support is appreciated.
Marissa
Hello Marissa
Welcome to the Online Community.
I am very sorry to hear of your Mum's diagnosis of vaginal cancer and can understand what a worrying time it is for you both. It is natural to have lots of questions but I would advise against Googling- tempting as it is- there is a lot of inaccurate and out of date information out there.
I will pop some links here that may be of help.
Vaginal cancer | Macmillan Cancer Support
Although vaginal cancer can often come from elsewhere, it is possible for it to start in the vagina- it's just rarer. It is reassuring that Mum has had pap tests and an endometrial biopsy (and these showed nothing) as this is where the cancer would most likely have come from, if it had spread from elsewhere.
Although it is hard to wait to have the follow up scans, these are necessary to provide more information about exactly where the cancer is and will also help the doctors to discuss treatment options with your Mum.
With regard to survival rates, anything you find on the internet is likely to not be particularly accurate. Only Mum's own Doctors are able to look at all her medical details, the biopsy results etc and then it will not confirm everything as they also need those scan results. Even then they can not be sure as there are so many different factors. At the moment its been found and that is good because now they know it is there they can start to do something about it.
The next step at the moment is really for Mum to have the scans to hopefully rule out any spread. When the doctors have those results they will then hold a Multi disciplinary team meeting to review all the test results and then discuss with the other professionals which treatments may be most effective. Then they would likely call Mum in to talk her through what happens next. Mum should be given a cancer nurse specialist who will be your first port of call for any questions/worries. At the stage Mum is called in, it seems normal for things to move ahead fairly soon.
If talking things through would help, then please do give the Support Line a call and speak to one of the nurses, who will be able to answer any medical questions. The details are below.
I hope this helps a bit. The waiting is really hard but hopefully by this time in January you will both have a much clearer idea of what is going on exactly and what Mum's treatment may be.
If there is anything in the meantime that you need, please do ask
Jane
Hi Marissa and welcome to the group.
I’m sorry to hear about your mother’s diagnosis, which must have been especially difficult to process at this time of year.
I would echo Jane’s advice not to rely on Google for information, especially as regards statistics which by their nature reflect a 5 year period in the past.
I haven’t had primary vaginal cancer, but I have had my cervical cancer grow into my vagina, hence my replying to you. I have gone through chemo and radiotherapy and also had my vagina completely removed so hope I am in a position to give you a little support if I can.
My tumour was almost twice the size of your mum’s, and I had a lot of radiotherapy treatment sessions which got me to a status of “no evidence of disease”. I did have a recurrence which resulted in my eventual surgery where I lost all the organs from my pelvis, plus my vagina and rectum. But I had adenocarcinoma rather than squamous cell cancer, so a different type.
I hope you don’t mind me asking, but are you in the UK? You used the term “mom” and “pap tests”which made me wonder if you were overseas? If you are not in the UK, the support line phone number would be different, although of course you would still be welcome to call. Treatment described by MacMillan relates to the treatment provided in the UK, which may differ from other countries. The process from diagnosis to treatment may also be different in terms of scans etc.
What I would want to say to you is that everyone is different and an individual in how their cancer reacts to any treatment, and you can’t second guess that. As you’ve already discovered, Google is not your friend in these situations! If you are in the UK, stick to reputable sites such as Macmillan, Cancer research and the NHS. Other sites on the internet may not be accurate or reliable.
Please let us know how things go and I hope the Pet/CT scan does not indicate any spread. It is hard to feel positive when you don’t have all the information you need, or know what treatment will be planned, but there will be support here on the community for you as you go through this.
Sarah xx
