Hi
My loved one has recently undergone surgery to remove a tumour from her mouth that had only just been confirmed as malignant. She has had no previous history of cancer or ill health and has not suffered from any general health problems elsewhere in the body.
I'm hoping that someone can provide guidance as to how it can be identified whether or not this Primary Cancer rather than Secondary?
1) Would it have been the usual procedure for the hospital to have had an all over body scan to confirm that this actually is Primary and is nothing nasty potentially lurking in major organs or anywhere else?
2) Or are these type of general checks dependant on the individual Consultants or budgets available for the particular Hospital Trust where she has been referred?

She had had X rays and MRI scans but generally just in the head and neck area

Any answers or reference to useful articles would be greatly appreciated

Thanks

Hello red devil

The majority of mouth cancers are squamous cell carcinoma and are primary cancers. Scans are thus normally only of the H&N area and the lungs as these are the areas that a secondary (metastases) is likely to be found. Whole body scans are only indicated if there are suspicions of spread to elsewhere (e.g. non-local pains, swellings or the tumour is of cell type not of the head and neck area).

The oncologists in the NHS are pretty good. I am sure that her oncologist would be happy to answer your questions.

Best wishes

Vinod

Dr Joshi
Many thanks for your prompt and clear response. This forum looks like an excellent resource for raising questions and concerns one would initially rather not voice in front of their loved ones

Regards
RD

Hi RD,

I know my mother received scnas to th head & Neck area, and also the lungs, as Vinod said.

At some point try and get a PET scan done, these it would seem are the best way to show if the cancer is clear. There are not many of the machines in the UK, and are very expensive, so you may struggle to get one done.

Best Wishes

Hello Red Devil
A primary tumour is made up of cancer cells only whereas a secondary tumour has both normal and cancer cells.
When we were told that my husband's tumour was a secondary, I didn't believe the dr. I thought it was a terrible thing to tell someone because how could he know? I was put back in my box when he gave me the explanation above!
You are right ~ you have found a valuable resource here on the forums. You will find information, support and answers to your questions in real time from those who have walked the trail before you.
Wanting answers but not wanting to ask them in front of your loved one is part of the load a carer carries. It's tough but there are many people on board here who will help to lighten your load
Sending you positive vibes from Down Under
Deborah

Thank you longleggedhair - I'll investigate more re PET scans right away
Also to Deborah 51, just the type of answer I was hoping for. Thanks for your welcome also
Great that there is such global support on here.

Now I've dipped my toe in, it gives me a little more confidence to elaborate more on our particular circumstances and to seek more advice,assistance and hopefully reassurance in future
Thanks again to you both
Kind Regards
RD

Hello Red Devil

Cancer is such a complicated subject isn't it? When my mouth cancer was discovered I had to wait some time for my op. I was terrified, imagining the cancer cells spreading all through my body. My surgeon told me not to worry about that, but didn't explain why. I should have asked more questions and I would do so another time.

Do let us know more about your circumstances and we will try our best to give you help and support. I don't know how I would have managed without this forum in the early days.

All best wishes

Gwyn

It's normal procedure for the histology labs to identify the type of tumour and your consultant should readily give you the info. It all should be as Dr Joshi said. If your lung x ray is clear they concentrate on the head/neck area.
Any early reoccurrence would usually be in the head/neck area too.
A lot of us on this forum have been posting on the forum for a good number of years - so survival rates are pretty darn good overall.
There is absolutely no reason to expect your partner should be any different.
To be so worried about her future (constant thinking of worse case scenarios - been there done that) is pretty normal behaviour. As time passes and her recovery proceeds it will get better for you both.
good luck - tony k

Thanks also Gwyn and tonyk for your replies
My wife is in her mid thirties, mother of 2 girls under 5,non smoker and not much of a drinker either, so no need to explain what impact the confirmation of mouth cancer has had on us.
She had surgery to remove the tumour and neck lymph glands 3 months ago. We were extremely relieved that there was no evidence of any spread to the neck in either MRI scan or after analysis of the removed glands, so no Radiotherapy or Chemo was deemed necessary by the Multi Disciplinary Team.
We are taking nothing for granted though and as I alluded to in my original post we are just trying to ensure we have asked all the right questions so there is nothing we may have regrets about later on. Also, trying to get used to the challenging task of getting back to as much normality as possible
Most immediate issue is a neck infection that became apparent shortly after the jawbone graft and the likelihood of further surgery in this area as jawbone appears to be infected.
I anticipate adding further posts on here in due course re this.
re longleggedhair's mention of PET Scan, I have initially asked a workmate who is good friends with GP/Surgeons as to their opinion on this.

Hi Red Devil,

Yes I agree with the above posts, its a horrible feeling, and a constant worry. My mother is due her PET scan in a month, and of course im hoping that all will be clear, and I can breath for 5 minutes!

As for the PET scan, I would try to get one done-it seems the screening method of choice, however you would need to chat to the oncologist about this.

My mom finished Radiotherapy last November, however they are not doing the scan until next month, this is to give the throat chance to heal.

According to the oncologist the PET scan will pick up and highly metabolic cells, which of course cancer cells are. It can pick up even one rouge cell apparently.

My mom was lucky in that she has not had to have surgery, however the oncologist has said that if the radio/chemo has not worked she will have to have surgery to the tongue, which has scared me to death, but fingers Crossed.

Best Wishes.x

Last year, I had Base of the Tongue Cancer and I don't drink nor smoke. When they did a PET Scan, they discovered it had spread to one of the lymph nodes (Stage III). I underwent aggressive Chemo & Radiation and my Cancer is now gone. I've just had my 3rd PET Scan and thank God I am still Cancer-free.