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...