Hi there,

After lurking these forums for the past 2 months, I decided to take the time to sign up and share some of the experiences my wife and I have gone through during her fight against Stage IV (T4aN2bMx)cancer of the tongue.

My wife is currently 33 years old with no risk-factors at all, and was diagnosed with the cancer when she was 31 weeks pregnant.

She had an induced birth at 36 weeks in which she delivered a healthy baby boy (3.06 kg at birth - thank the Lord!) and exactly a week later, went into theatre to receive her surgery which consisted of 3/4 glossectomy, neck dissection 1-5 (left hand side), trachaestomy, esophagoscopy and reconstruction of her tongue using her muscle from the left leg.

Miraculously, she had the trachy out within 4 days of the operation in which she started speaking straight away (80% speech function) and a few days later, she was able to swallow food and eat by herself.

Within 10 days, we were discharged from the hospital and she is currently able to walk, eat, talk almost at 90% pre-op levels and she is now getting some much needed time with our little bubs!

We were also referred to a specialised cancer treatment centre (Peter Mac) where we just received our treatment plan (expected to start 22nd of October) that will consist of 6.5 weeks of radiotherapy + Chemotherapy (Cisplatin).

As you can tell from the situation above, it has been a pretty life changing 7 weeks where we have experienced major highs, and lows all in one mixed basket.

However, through this ordeal, we have experienced much joy & have much to thank with her speedy recovery and the support + love we have been blessed with by our family & friends.

Why I am writing this here I do not quite understand, and I know there is a long way to go yet but I feel that this information somehow will help others 'lurking' these forums looking for information, inspiration & hope.

We will make sure to continue on updating this story with the rest of the members on these forums and I wish everyone all of God's blessing in their fight against this dreaded disease.

Jay,

Thanks for sharing. It helps for those of us that have not yet had surgery (like me). The unknown is daunting, and it is great to hear that she came through the surgery so well, especially since I have a similar path ahead.

Congrats on your little one, and good luck to you and your wife going forward!

Hi Jay, Thanks for sharing your story with us. It helps all of us to be able to share what we are going through, as well as hear what others are going through. I will keep you and your little family in my prayers. I am so happy that your wife is doing so well, I am sure that little baby is a huge motivator for her!! God Bless

Thank you Wendy for your well wishes.

The bubs is definitely a huge motivation for her and I am sure that she will hang in tough during the 32 sessions of Radiotherapy + 7 Cisplatin injections!

As for the surgery itself, I can only speak on behalf of my wife who says that the only real difficulty is the aching pain + numbness where they did the neck dissection (which is slowly getting better) and seeing hair grow on her tongue (as the flap was from her leg)!

I have so much respect for everyone on these forums and if there is anything I have learnt is that it is as much of a mental, spiritual fight as it is a physical one. Keep your spirits high, and make sure you keep a positive mindset without being too optimistic. I will make sure my prayers are with others on this forum who will, have and been through this journey we are currently on..

Hey jay had the same surgery - less tongue removed but very same - chemo and rads can be ok - horrible depending on th person... Tell your wife to bulk up now extra weight will help around week 4-8 (radiation keeps working for about 2 weeks post treatment.) read up on the side effects, an prepare for them - if she doesn't experience some of them then awesome - if she does you're prepared. Hugs and welcome and congrats on the baby... See my signature below - I had no precursors- either... There are quite a few of us who didn't.

Hi Cheryld,

Thanks for your words of advice.

I have been feeding her non-stop and she has packed on around 2.5kg's since our discharge around 10 days ago.

The forums have been a great help in dealing with and preparing for the Radio & Chemo therapy and I'll make sure to share our story during the treatment phase which we are expecting to start on the 22nd of October.

Hi all,

A few days ago, my wife went in to get her PET / CT scan done as a precaution as she was unable to do her PET prior to surgery due to her being 32 weeks pregnant at the time (she did have her CT scan & MRI pre-op).

She had only recently had surgery (11th of September) which involved a partial glossectomy (2/3 of oral tongue), Neck dissection Level I-V and tongue reconstruction using her leg flap.

Unfortunately, we got a call from the docs this morning saying that on the PET scan, they saw 'unusual activity' near the base of her tongue which was of particular concern and a bit of activity near where her lymph nodes were removed on the left side of the neck.

CT scans did not show anything definitive and I know there is a high false-positive rate on PET scans particular so close to post-op but am still very worried..

We were expected to start treatment on the 24th of October with 6.5 weeks of Radio / Chemo but they have now put this on hold until the doc's further examine Jenny.

Anyone have any similar experiences or able to shed some more light on this if possible? Am I safe to assume they will do a visual check as well as a Fine Needle Aspiration?

Thanks in advance..

Kind Regards
Jay

Are they suggesting additional surgery prior to the rad/chemo?

I'm wondering if it might just be the healing process as healing uses a lot of sugar too. Also if shes not HPV+ - and they suggest surgery again i would do it as this is the most effective way of treating this particular type of cancer - follow up with rads and chemo is also very much warranted - regardless I would say move FAST - this cancer can be very aggressive. Did she have perineural involvement? Did she have ECE (extra capular extension)? sometimes the cancer leaks outside the node so this could be the case of the neck. It's very possible it's a false positive but act as though it's not and push to have his dealt with immediely - no waiting for his appointment or that - make noise get some answers now. Please let us know what happens and best of luck.

Hi David and Cheryl,

We have our meeting with the ENT doctor tomorrow morning but really don't know what to expect.

She has not been checked for HPV+/- as they really didn't think that the treatment would differ considering how advanced the cancer was in the first instance, and did not involve the base of tongue.

There was concerns over one of her lymph node capsules 'leaking' and I do recall from the Pathology reports provided that one of the frozen cell margins was only 1mm (hence why the recommended Cisplatin) and this has got me really worried.

In saying that, the surgery was deemed a huge success and my wife has been recovering very well and have only experienced a bit of pain around where the neck dissection occurred and discomfort in her shoulder which I have read is normal..

The radiotherapy specialist who examined the PET scan and called said that they would probably look at surgery first before starting her Radiation & Chemo if they think it was a loco re-occurrence of the cancer but the ENT doctors wanted to see her again first..

However, is it safe to presume that PET scans so close to surgery date and involves BOT have quite high false-positive rates?

Over midnight here - very anxious and really can't get to sleep...

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

Hi Jay,
I just wanted to say hi from a fellow Aussie and to let you know that I have been following your posts.
The information you have been given here is first class as usual and at this stage there is nothing I can add right now.
It seems that you and Jan have a wonderful attitude for what is a very difficult time for the 2 of you and your extended family as well.
It is also wonderful to read that you have some great support getting you through this.
I just wanted to wish you all the very best for the further upcoming treatments and to let you know I will be there with you in spirit and looking for your updates.
Gabriele

Thanks Gabe for your words of encouragement!

Although I am not an Aussie (I am from across the ditch!), I have been calling Melbourne my home for the past 7 years, and have enjoyed every moment of it!

Furthermore, going through the health care system here has made me appreciate Australia even more, and the professionalism of the doctors, nurses, surgeons and all the associated health care professionals have been incredible.

Hopefully there will be a chance for me to repay some of this debt back to the community once Jen fully recovers from this ordeal.

I hope your experience has been the same Gabe, and hope your recovery has been a swift & encouraging one.

Hi all,

Just to update everyone on the Wednesday morning clinic to discuss the PET/CT results for Jen went very well.

They have said that the areas that were lighting up were due to the area healing + inflammation rather than something suspcious, and have given us the all clear to start treatment as per schedule from next Wednesday onwards.

As per my previous posts - false / negative rates for PET/CT scans so close to Post-TX is incredibly high and the minimum time you should give yourself for this should be 3 months after the treatment / surgery has ended.

Still a fair while to go with the 33 sessions of Radiotherapy & 7 doses of Cisplatin but the doctors are confident that based on Jen's current recovery rate, she should be able to get through this ok.

Once again, thank you all for your wonderful support & insightful responses. We have made sure to keep you all in our prayers and hope that the info provided in this post will help others who are going through something similar.

Kind Regards
Jay & Jen

Hi All,

Very busy week with a lot of things going on in the household. We had the passing of my grandmother on Tuesday morning who went peacefully in her sleep after a 3 year struggle with Parkinson's Disease.. May she rest in peace.

On another front, my wife had her first (half) week of treatment and has now been competed 1/7 Chemo & 3/33 Rad treatments!

We were both nervous prior to starting treatment as to how bad the reaction to treatment would be but so far so good with very minimal side effects (red cheeks from the medication was about it). I guess the waiting game is always the most difficult and once you get the ball rolling, a lot of the anxiety and fear actually passes and your primary concern then becomes finishing off the treatment to the best of your ability.

Thanks very everyone's word of encouragement and advice to date and we will make sure to continue to update our progress over the next few months on Jenny's recovery to becoming cancer free!

Hi there best of luck! Things should be okay for a few weeks... Hugs and praying it goes relatively easy for you both.