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Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Wendy, many of the most knowledgeable and compassionate people on this forum have already made their always-excellent contributions to this thread. Great advice that I hope will help you in this trying time. As someone said above (or if they didn't I'll say it now): take a deep breath. You seem to be in a great place with your team and you're in good physical shape. But most importantly, your attitude strikes me as that of a fighter.

From everything I've experienced and read (mainly on this amazing website, and I encourage you to explore it from the ground up), it does indeed seem most likely that you are HPV+. And that is a good thing under the circumstances.

Your situation and mine were very similar in that my docs all thought my neck lump was a branchial cleft cyst. I had surgery to remove this alleged cyst and it came back positive for SCC.

But here I am 2 1/2 years later doing quite well and having just had another series of clear scans. And so too will you!

Take everyone's advice about eating a lot (I dropped 30 pounds), getting a TSH test, gathering your friends and family to support you and keeping a positive attitude. You'll also likely be getting fluoride trays after a dental exam.

Every one of us is different. I elected not to get a PEG tube during RT but later regretted it, as I had a helluva time with mouth and throat lesions. But I've always been prone to canker sores so maybe was especially sensitive. Anywho, something to discuss with your team and your family.

Know that we are all here for you at all times. Ask any and all questions, because there's truly no such thing as a bad, stupid or inconsequential one.

And please keep us posted.

Courage!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Nov 2011
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My husband's squamous cell carcinoma was found in a similar way. At the "team" meeting this summer with the radiation oncologist, Dr W remarked that this could be caused by HPV. Dr W ordered another biopsy and found that the cancer was indeed caused by HPV which is definitely a good thing because he did not order any chemo, only radiation. Before Bill even started the treatment, Dr W ordered a PEG tube which surprised us. I'm a speech pathologist and know all about PEG tubes. Dr's nurse said that we may not need it but that it was good to have just in case. Well, after only 2 weeks of radiation, he began using the PEG tube and continued throughout the radiation treatment. I would urge you to comply with your physicians recommendations. Bill lost over 20 pounds with the PEG tube and getting regular feedings. So, please listen and do what your doctor says. It is very hard not to lose weight even if you do everything you have been told. Also, Bill is a lawyer and has not been able to work for about 3 months. He is 66, so your young age will be in your favor. Good luck to you. Our journey is not over yet, but yours is just beginning. I'm so sorry for your diagnosis, but it is 90% curable, according to our doctor, so we are keeping a very positive attitude.


CG for husband. Dx 08/11/2011 BOT cancer w/METS to neck lymph node.
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Hi,
I just want to comment on the equestrian part - if you own or lease a horse(s), you will want to enlist your riding friends for a spot of help with its care. I can give you an idea of my husband's return to riding if it that would be helpful - everyone is different, but at least it would be a data point!

Last edited by Maria; 11-27-2011 02:39 PM. Reason: typos

CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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