Yes..I think it is safe to assume that.

Hi all,

Just a quick update from our meeting with Dr. Nick, our ENT doctor.

He had a close look at the BOT and saw nothing to suggest that it was a re occurrence, and it will be more than likely that it will be false-positive.

However, he wanted to go with the senior doctors & the radiotherapy oncologist (who is different from the one who broke the news to us) through the scans once more, and have told us to come back next Wednesday morning where they do patient clinics and the entire crew of doctors are there (usually upwards to 25 doctors.. it is an AMAZING system they have here).

Apart from that, he said the wife was recovering remarkably well and that she will still be going through radiotherapy & chemotherapy as per schedule (24th of October).

Not entirely out of the woods yet and its another week of waiting to get the all clear but the news could have been much much worse so I am grateful for what I heard.

Thanks to everyone who provided us their words of advice and I will make sure to keep you all posted when we get the final results next Wednesday

Kind Regards,

Jay & Jen

The BOT part concerns me as this was not an operative area. The ECE is also concerning because that means it had moved into the surrounding tissue. Ideally the surgeons get it all - but sometimes they don't since it's cellular. Try not to worry too much as PETs do give false positives. It is very possible there is healing going on in the base of tongue area as she had a trache etc... With regards to HPV etc... It actually does make a difference. HPV + cancer generally responds better to radiation and chemo so they don't always do surgery. But to me it sounds as though (based on location) that she has non HPV. Best of luck - please let us know what happens.

Hi Cheryl,

We found out that the area where the BOT is lighting up is indeed the extent of the surgical area performed, and it was where the plastic surgeons had to 'tie up the nerves'.

Furthermore, there was a lot of BOT muscle movement prior to the PET / CT Scan with Jenny having to make her mask & a little mouth guard for her Radiotherapy treatment which they also tell us may have lighted up the area..

As with HPV +/- I completely agree with you and am still baffled with why they were reluctant to do the tests as it is something that I wanted to find out from day 1. Perhaps because the size of her tumour and the nature of it (it was invading the tongue muscle, rather than spreading) the doctors thought that the treatment plan would be no different even if she was HPV+

Sorry Cheryl, but didn't understand the ECE part - are you able to clarify for me what this refers to?

I have never seen a Primary located in the forward part of the tongue test positive for HPV. To the contrary, if your primary is BOT or Tonsils you have a 70.3% probability that those cancer cells will test positive for HPV.

Hi David,

The primary tumour was left side of the oral tongue, with the tumour extending all the way to the edge of the base of tongue hence the doctors were quite sure that it would be HPV-

She was very very lucky they did not conduct a total glossectomy due to the location and severity of her tumour, but as a consequence, we only have a 1mm clear margin where they cut that part of the tongue.

Hope that explains why the cancer was diagnosed as Left Side SCC of tongue, but surgery was conducted to base of tongue as well..

Kind Regards
Jay

Hi, Jay
very glad to hear about the PET - all my best wishes as she continues on her road to recovery.
How are you all doing with the baby at home? Do you have family/friends to help out when she is tired as the rads/chemo progresses?
Maria

Hope it does test positive for HPV.

Hi Maria,

Baby is doing great (he is now coming up to 6 weeks) and has been a pretty good boy till now!

We have our mother-in-law from overseas helping us out at the moment which is a great help, and our close friends have volunteered to look after the bubs full time when she has to go back later this month, and Jen starts her treatment.

One positive thing that we have taken from this ordeal is how grateful you are for having such amazing family & friends around you.. They have been truly wonderful and we feel very blessed.

Hopefully, we will be able to repay the debt to everyone with a fit and healthy Jenny & a big strong boy!

Hello Jay and Jenny,

I am a young grandmother, my granddaughter is 13 months. When I am down and sad, seeing her brings me so much joy. Children are precious gifts from God. She makes me so happy as well as my husband. Without her I can't image how my life would be.

My thoughts, prayers and concern goes with Jenny, your baby boy and you! God bless!! Keep the faith!! Smile! Send my regards to your mother-in-law, she is also a blessing from God!

Ina