Hi there,

I'm Tamara. I was diagnosed with SCC(T2 N1) on 29 Oct 08. I went into hospital in Sydney on 10 Nov for a partial glossectomy, neck dissection and tracheostomy. My first flap failed and died (which I hear is pretty rear) so both my forearms have wrist to elbow scars.

I've just had my 30th birthday, and this has all come as a tremendous shock for me. I've never smoked and hardly drink, so my Doctors suggested HPV might be the culprit, through this has not been confirmed.

My Doctors are not recommending radiation for the moment, because of my age and the associated risks of radiation related cancer later in life...but this may be on the table in the future.

I feel like I'm on the other side of the mountain for the moment, but am trying to adjust to living with this and figuring out where I go from here.

It's really great to have found this forum.

Tamara

Hello Tamara,

Welcome to OCF where you'll meet a lot of good people with great answers due to experience. My GF's friends live in New Zealand but will be moving to Italy after they leave the States in January. I'm sorry that you had to find us though...

I have a couple of questions, was the cancer base of tongue(BOT) and were you treated at a Cancer Center in Sydney?

Yes..I didn't fit the profile either and I'm always amazed about the numbers of young people on this site that also don't fit the profile.

Hi Tamara,

Sorry you have had to deal with this horrid disease, you have certainly found a forum where there are many people who understand exactly what you are going through and will be able to help you with any questions you have or support that you may need.

Have you had more than one opinion regarding the need for radiation. If you haven't I would suggest that you go and get some more. I just don't understand why your doctor would not recommend radiation for the moment.

There are many other people your age who have had radiotherapy. I would question why they are not prepared to destroy it with everything now. Radiotherapy cleans up and kills any bits that may have been left after the tumour has been removed.

In my opinion getting another couple of opinions would be a very good idea.

Karen

Yes tamara, listen to what Karen is saying. This stuff can coma back in a lot less time than you can imagin, go work that Drs mind over a little. I didn't have rads or chemo the day in Aug but ended up with Oc back and had to have rads and chemo plus implants in my tongue and minus my teeth. This was for the implants.

Tamara:

Welcome to OCF. You will find lots of support and answers to your questions by those who have been thru this already. You are lucky not to have had radiation, it can be pretty hard on you. Luckily being young helps make it easier to heal after treatments. Did you have a second opinion? Did you only have surgery, or did you have chemo too?

After you have gotten oral cancer, the cause isnt important. At least not to me it didnt matter, I just wanted to get well. Healing can be a long process with setbacks along the way. Dont let that discourage you. Hope you heal quickly and have a Happy New Year.

Radiation is not always effective -- In my case I had partial glossectomies followed by XRT radiation (not that wimpy IMRT stuf) of my head and neck, but two years later, I had a tumor inside my mobile tongue and six months after that I have a BOT tumor -- These areas were thoroughly shotgunned with radiation, but I've grown new cancer since -- The Docs are surprised.

Hey folks, lets not scare our new guest, we don't know what her doctor knows!

Tamara, Welcome. Since we all have a bit of passion about this disease, there are times when we might come across a little bit agressively. Please know that we will offer suggestions that you might consider based upon our observations of many many members here.

Congratulations on completing the first (and hopefully last) step to a cure for this. If you read through the forums here you'll find that perhaps the most difficult spot to be in is exactly where you are. Your cancer seems to have been caught early and that is good. The hard part is that you get a decision with regard to radiation (many of us did not have a choice). Radiation therapy is mean nasty stuff that I would not want to push anyone to get without a good reason. THE REALLY HARD PART is knowing when you should be saying yes to getting radiation therapy. You need very good input from the best resources you are able to get. (which you may already be getting) Even then you may feel like it is still a gamble.

To be sure, you may already be cured. This cancer, however, is one that likes to return if not fully treated. If it does return, often it is harder to treat. This is what everyone here is concerned about; that you stay amongst the rank of winners against this disease.

Are you planning on having your slides tested for HPV?

Hi Everyone,

Thanks for the inputs and advice. Having or not having radiation is definitely a tough issue for me at the moment.

The oncologist said that in my case, the risks of radiation would outweigh what would only be a very nominal gain. My ENT specialist concurred with this opinion.

I've not had a second oncologist opinion on this, so as a first step I'll definitely seek additional advice and weigh these up to make a final decision.

If my slides were tested for HPV I havn't been notified of the results. I'll definitely follow up on this too.

Everything has happened so quickly since my diagnosis (Oct 29th) so I'm still very much in the research and learning phase.

Thanks again,
Tamara

Tamara, please do get that third opinion. I do not recall any other person here with lymph node involvement (N1) that radiation wasn't recomended.

Take care

Tamara,

Typically doctors don't automatically send the slides out for HPV testing. I had to TELL them I wanted them tested but that was 2 years ago. Maybe some doctors are recognizing the importance of HPV testing where studies have shown a marked increased probability of HPV being the cause like young, non smoker, casual drinker, primary in tonsils and mets to nodes. 72% chance HPV+.

I see my ENT in a couple of weeks and I'm going to request my specimen to be tested for HPV, even though it wasn't BOT or tonsil but it was SCC.

Hi Tamara,

I'm sorry that you're here, especially at such a young age. I concur with the others that you should get another opinion. Have there been any discussions with a Radiation Oncologist? If not you might want to speak to your ENT about being referred to one for an opinion.

I have had radiation but my ENT said that it was only done because I had extracapsular spread from the affected lymph node. If it had not broken out of the node then I was given the impression that I could have avoided radiation and chemotherapy.

I guess it's possible that treatment regimes may differ here compared to the United States. Radiation certainly seems more prevalent as a standard treatment even in some N0 necks in the US than it is here. I'm from Melbourne by the way!

Good Luck,
Sue G

Hi Tamara,
Welcome to this great forum which is really a family that you can turn to for the best advice from people who understand and have been or are going through what you are.
As you can see I had surgery only (N0) and as mentioned you must get more professional opinions on your treatment options ASAP.
Where were you treated in Sydney?
Also sorry to hear you needed a 2nd flap and hope that this one has been successful.

Please let us know how you are going.
Gabriele

Hi Gabe,

Thanks for the message. I had my surgery at the Prince of Wales in Sydney. My ENT specialist is Assoc Prof Tom Havas..he's the Director of ENT there (I think). All the medical professionals I've encountered have told me how lucky I was to be referred to him directly.

It was actually the radiation oncologist at POW who advised the radiation. Rationale being that it would only offer minimal gain, and the risks outweighed it. Prof Havas concurred with this.

I'm seeing an ENT and a radiation oncologist here in NZ, so will get their input as a third and fourth opinion.

Tamara