Newly Diagnosed

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Newly Diagnosed

by Cortni on Wed Aug 12, 2015 12:42 AM

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So today the oncologist confirmed the fear I've had the last few weeks, SCC that she suspects started in my tonsil. I noticed a swollen lymph node in my left neck in May. I saw my Primary care doctor who referred me to an ENT. The ENT examed me and wasn't too concerned, started me on antibiotics and scheduled a 6 week follow up. No change after antibiotics. I returned for my 6 week f/u and was told I needed a tonsillectomy and lymph node removal but was also sent for a Cat Scan of my neck. After reading my Cat Scan results and seeing that the node was suspicious looking I decided I wanted to go to MD Anderson for a second opinion. I was seen by the oncologist there and had a FNA scheduled for yesterday. She called with my results today. SCC, still waiting to see if it is HPV positive. I knew in my gut that this was what it was as I had a second lymph node come up on my opposite side. My next step is to be scheduled with ENT and radiation oncology at MD Anderson. I am just terrified. I am only 34 and am the mother to 2 young kids. Any insight or information about what to expect or treatments options would be greatly appreciated. This is so scary. 

Thank you in advance for your responses and God Bless you all. 

RE: Newly Diagnosed

by MissVee on Wed Aug 12, 2015 02:52 AM

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Cortni, I'm very sorry to hear of your diagnosis. I am not sure what I have at this point, but I have another thread where I listed my symptoms. I'm in the ER right now bc my tonsil has gotten bigger and I can't swallow very well. (I have taken the antibiotics & prednisone - no help.) ENT recommended a tonsillectomy. Neck CT was normal, only a 4.4mm nodule on thyroid. I have two young children as well. I'm so scared. And in a lot of pain. Wishing you all the luck in the world.

RE: Newly Diagnosed

by augustus on Wed Aug 12, 2015 12:22 PM

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MDA is the place to be. I was diagnosed a year ago and spent the fall and winter there. I also was stage 4 tonsil cancer and they got it. Tough treatment, but you can do this. 

RE: Newly Diagnosed

by atcbugsy on Wed Aug 12, 2015 03:55 PM

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Cortni,

My last radiation treatment at MD Anderson was 10/3/14, so I've been through what you're about to experience.

First thing you need to do is take a deep breath and know that what you're about to go through is a marathon.  Take copious notes and know that they see hundreds of cases like yours (and mine) a day and that they know what they're doing.

If memory serves me correctly, you'll need to get your teeth checked thoroughly and get any dental work you need done BEFORE you begin radiation.  They'll probably explain all this to you, so I'll just hit the highlights.  The best thing you can do is to follow their instructions and visit these boards if you have questions as to what others have gone through.  Know that everyone is different and that what the doctors at MDA are telling you are averages.

The best average they ever told me was that HPV 16 at the base of the tongue (what I had) has a 96% success rate as the cancer is very sensitive to radiation.

Do you have a caregiver who can help you and/or take care of the kids?  I'll tell you, I thought I'd be golfing the first two weeks of my treatment, but the radiation kicked my butt and I was having side effects the first week in.  I didn't have to have surgery or chemo, but the radiation kicked my butt.  I was lucky that our son was living in Houston at the time and he was my caregiver.  My wife didn't come out until my last two weeks and I'm thankful she did.  We couldn't have made it to the end without her.

My one suggestion is to get a PEG tube when they bring it up.  By by 25th treatment I had lost about 30 pounds and it took me an hour to drink a little bottle of ensure.  I wish I had gotten the PEG tube sooner.

There's really too much information to tell you what to expect.  You should expect to be treated like you're the only person at the facility.  I found everyone to be professional and caring.  Oh-whenever anyone asks if you want a warm blanket, say yes.  It gets really cold in some of the rooms, and getting radiated every day will make you cold (at least, it did me).

Everyone on these boards has been through the journey you're about to begin, but none of us are you.  I could tell you not to be scared.  That everything will be alright.  But that at the time you're going through this, you can't see that.  But it's true.  You'll make it through and you'll go through many changes.  You'll find that you'll develop a "new normal" for eating.  Foods you used to enjoy will taste different.  Just know that we're here if you need us and we'll help you get through this.  And you will get through this!

Take a deep breath and know that yes, it's going to be tough.  But you will make it through.  We did.  And you will too.

Keep us updated.

Bugsy

RE: Newly Diagnosed

by Arman on Wed Aug 12, 2015 05:06 PM

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Cortni,

Bugsy is absolutely right. I was diagnosed with Stage 3 tonsil cancer Aug 18th 2014, had the tonsil removed and went through 6 1/2 weeks of radiation with no chemo. I did not have a peg tube and lost 28 pounds in 6 1/2 weeks. I am 5' 8" tall and wend down from 162 to 134 pounds. I finished radiation on 11/23/2014. Now 9 months post radiation, I have gained all the weight back and feel normal excpet for dry mouth which has been getting better slowly. The treatment is no cake walk but you will be back to normal in less than a year. Good luck and keep us posted.

Arman

RE: Newly Diagnosed

by RonCancerfree on Wed Aug 12, 2015 10:15 PM

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I do not know whta your treatment protocol will be but if you are generally healthy you can do this. As I look back each day of chemo and radiation I experienced was manageable on its own. Some days were more difficult than others but 18 months out I can honestly say I would not have been afraid knowing what I know now. 

I got a PEG tube and thank God (and my wife) I did. If you are going to have radiation I would recommend it. You need a tremendous amount of hydration during radiation and swallowing will be difficult after a couple of weeks. I had heard the fears about forgetting how to swallow but my Radiologist was quick to calm those. I found that even while on the feeding tube I had to swallow saliva a few times each hour. I had zero trouble going back to swallowing once the pain had subsided.

YOU CAN DO THIS!!!  I hope you have an excellent and compassionate team to support you!

RE: Newly Diagnosed

by Cortni on Wed Aug 12, 2015 11:46 PM

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Thank you so much for your response. It sounds strange coming from me to tell you to not be scared but don't be. I would say if you have a good CT that's a very positive thing. My CT showed a suspicious node before I was diagnosed so I am happy to hear that your CT didn't show anything suspicious. 

Best of Luck to you. I hope you feel better soon.

RE: Newly Diagnosed

by Cortni on Wed Aug 12, 2015 11:52 PM

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You guys are so amazing. There's not much at this point that will completely erase the fear but I feel very fortunate to have come across this forum and all of you. I go for my first appt with my head and neck surgeon, rad/onc, dental onc, and med/onc next week. I'm hoping that I could be a candidate for Proton Therapy. From what research I've done it seems like it may be a less dreadful form of radiation. Has anyone had this?

RE: Newly Diagnosed

by atcbugsy on Thu Aug 13, 2015 12:25 AM

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Hiya Cortni,

I asked for Proton Therapy, but was told by my Oncolgy team the type cancer I had, HPV 16 at the base of my tongue, responds better to the good, old-fashioned radiation.  Another factor in my getting the old-fashioned kind was that my insurer would not pay for Proton Therapy except under certain circumstances, none of which I qualified for.

There are folks on the forum who have had Proton Therapy and I hope they post here for you.  Good luck.

Bugsy

RE: Newly Diagnosed

by PopPop on Thu Aug 13, 2015 01:34 AM

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Cortni,

I like the others am sorry that you are here seeking answers to your questions, but hopefully we can help you get thru this.

All the above replies are informative and I won't bog you down with a list of suggestions as to what to do,etc.

I would only suggest one thing at this time as you are going to be headed to a lot of appointments next week. Please take someone along with you that can write down the answers for your questions with your Doctors.

Another person mentioned at another site I visit that he had all his questions typed out on papers with a good amount of space between questions so the Doctors could write the answers on his list. However you decide to do it at least take someone along.

As mentioned above, have your teeth looked at by a Cancer Dentist that is part of your Team. To answer one of your questions, I had the IMRT radiation as that was the only type around where I went, but that was nearly 11 yrs ago. I also had the PEG Tube which was very helpful after my surgery and during radiation.

My Best to You and Everyone Here

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