Hello
My name is Mary
My sister, 36yrs old, was diagnosed with tongue cancer in march Left side (sorry i'm don't really know all the details). after maybe 3 months of having an ulcer that didn't go away. Being a new mum she thought it was stress and didn't have time to get it check out.

She had the first op couple of weeks later. pathology came back that the clearance was very good, except for one bit where it spiked and the clearance was only 1mm. The dr was confident that he got it all though.

A week later two lumps appear on her tongue, where the scar was. The Dr thought it was just scar tissue or a reaction to the stitching not dissolving entirely. Another wk went by and the lumps grew to about a finger knuckle each. A biopsy was done and it came back positive cancer.

She just had her second surgery a week ago. The clearance is about 1cm this time. She had a flap created via the inside of her cheek. Her tongue was attached to her cheek to let the tissue grow( !!??) and will be detach next week. I've been reading all your post and doesn't seem like anyone had a flap created in this way ( just an observation).

Because the cancer reappear so aggressively she's been really worried that she'll lose her tongue entirely. She hasn't ask the surgeon what that would mean as she doesn't want to think about it. I'd really like to know if that was the case, having to remove the entirely tongue, will the surgeon be able to create a new one? Will she be able to talk and eat?

She had and ultrasound to see if her nodes have changed and they haven't. Should she still insist on having a biopsy?

She is also seeing an oncologist about getting radiation. But after reading about all the side effects, I'm unsure if she should go with it especially because her nodes are in the clear (supposedly). Is it a sure bet that her teeth will fall out after radiation?
I'd love to get your opinions. Thanks
I'm so glad i found this forum

Welcome, Mary. Sorry to hear of your sister's cancer. I don't know about the tongue surgery as I had a diffferent situation but I will say that most of the affects of radiation fade in time and if she has strong teeth to begin with and uses the flouride trays that the dentist should give her it's pretty good odds that she'll keep her teeth. Best of luck to her.

Thanks David.

From reading the other posts. People seem to have trouble( find it painful to swallow etc.) eating during radiation or chemo treatments. Is this because of the surgery they had prior?

Your sisters teeth will not fall out from radiation. That is a myth. She will need to take special care of them while going thru radiation. Radiation has many side effects such as giving SOME patients difficulty in eating, swallowing. Everyone is different, some sail right thru treatments while others struggle. Your sister is young which is to her benefit as she should recover quicker than someone who is more senior.

Has your sister considered going for a second opinion? Surgeons cut and it seems that it was possible that one teeny tiny cell could have been missed during the last surgery for it to reappear so quickly.

Best of luck to you and your sister.

Welcome Mary
Christine has suggested that your sister get�s a second opinion. In light of all that has gone before I think that would be a good idea. What state is your sister in? What type of Dr's are you referring to?
This is the first time I have heard of the flap being taken from the inside of a cheek...it does not mean that is is not done!
I cannot comment on the radiation as I did not have it but it seems you need a lot more information from the medical experts.
You will find this forum invaluable for information from people who have or are where your sister is now. It is great that she has you to obtain information for her.
Gabiele

Mary,

If you've been reading this site for any length of time then you'll see a trend that tongue cancer is usually aggressive and usually has several occurrances. I didn't have tongue cancer so I'm by no means an expert but I've been a part of these forums long enough to see trends.

2nd opinions = prudence, it's just a good idea to get the BEST medical advice available to you and then get a second set of eyes on it just to be safe. DON'T make decisions based on half truths and only partial information...yes radiation has side effects, but it's also the big gun that can help knock an aggressive cancer out and keep your sister alive. Get all of the information before making a decision.

Best of luck,

Eric

Thanks everyone for your replies.

Gosh it's very scary. I guess we all thought, yep cut it out and she'll be right as rain! Reading all the post on here, doesn't seem like anyone has had it that easy.

Mary

Hi Gabiele

Her Dr is and ENT specialising in cancer treatment
Here's a brief bio of him. I've deleted his name.

Dr ...... - ENT.
Dr ..... qualified with a medical (MBBS) degree from the University of Western Australia in 1988. In 1998 he attained his Surgical Degree from the Royal Australasian College of Surgeons in Otolaryngology, Head and Neck Surgery. He Currently works as a consultant surgeon, Dept of Otolaryngology, Head and Neck Surgery at Royal Perth Hospital. As well he is the visiting ENT surgeon to the Albany Regional Hospital and consults in his Private Practice in Perth. Dr ... has admitting rights to The Mount Hospital, St. John of God Hospital, Subiaco, Colin St. Day Surgery, Bethesda Hospital. He is a supervisor of Basic Surgical Training and ENT Training at Royal Perth Hospital. He currently is a State committee member of the Royal Australasian College of Surgeons. He is also a Director of Sleep Pro Australia.

He seem to have all the right qualifications but I'm not one to think that a degree is the only thing that matters.

Mary

Mary, did you notice that the word --- surgery, it kept appearing over and over in the bio? What about being ENT specializing in head and neck cancers? In no way am I discrediting the doctor, it only confirms what I told you earlier. Surgeons cut. Please seek out another opinion right away to get what Eric mentioned...another set of eyes. What about going to a cancer center? Hopefully, there are hospitals there that specialize in cancer. Im not familiar with what other countries offer.

Good luck with everything.

I think you have found someone close who was treated at a cancer center nearby. Please see the info from Tony Australia's post .......

I am at an exellent hospital Royal Perth and have a full team speach, nutrition, physio, surgeons, phycologists, all very kind people. I hope this sort of helps portray my condition.

See his list of specialists? Thats how it should be. Maybe this place would be able to treat your sister. Hope this helps.