| Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Dear Dre,
Thanks for sharing the good news! I hope the prilosec treatment works and use this as a chance to change your lifestyle for good. Your wife and children need you!
I hope you feel better soon, but as Cheryl said, please do make sure that you get to the bottom of this.
Wishing you good health, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Dear Dre, We are always happy to hear when it is NOT this dreaded disease, so don't be embarrassed. Maybe it's just a little heads up to help you to continue a healthier lifestyle!! Hope the Prilosec works. Keep in touch if you would like. We are always here! Also, pass the site around if you hear of anyone else having issues. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Sep 2012 Posts: 6 Member | OP Member Joined: Sep 2012 Posts: 6 | Hi folks, Sorry to be back on here, but looking for your thoughts, as this sore throat and swallowing trouble is persisting in a bad way. I went back twice to the ENT since MRI. Prilosec was useless. Last week he gave me antibiotics which isn't doing anything. It's been over 2 months and the discomfort is now constant, getting worse, and extremely unusual for me.
I made an appointment with a different ENT (Stanford) next week. Thoughts on what I should ask? The MRI was clear a few weeks ago - is that the best test? Could an MRI be missing something? I was reading about barium swallows, PET, etc. Any advice would be appreciated.
Thanks again. | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Dre
Your last ENT said he would consider a swallowing test next. That's the Barium Swallow. That's what I would be asking about.
Good luck
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Hi, Drew.
Please don't ever apologize for coming back to these forums. You are always welcome here!
I'm sorry to hear that your symptoms are progressing. Getting a second opinion is a good idea.
When I was first diagnosed, I was half way through my second pregnancy, so a CT with contrast was out of the question, so they did an MRI without contrast (which is not the first choice for all MDs). I think since I had an excisional biopsy which confirmed SCC of the tongue, they did the MRI in order to estimate the size of the mass. I'm speculating here, but either an MRI or CT with contrast would be the first choice in case that there was no tissue to biopsy. I have a friend that is a CT technologist and he said most doctors will not even bother getting a scan of the neck without contrast due to the dense anatomy in the area.
So, I think that an MBS and a scan with contrast to the head and neck makes sense to me. Just make sure that you get a second opinion from an experienced head & neck oncologist who has sees hundred of cases per year.
Best wishes and here's to hoping that they can get to the bottom of this, which is nothing serious. Please keep us posted.
Take care, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2012 Posts: 60 | Hi Dre, You and I have some of the first signs of cancer. I was going to the doctor for a few months with the same line "You have alegies and lets give you Flonaz and take sudefed" I still had a very sore throat and no nazal prolems. I had to go to the ER to get a new Doctor who then referred me to a ENT. The ENT did a scope down my nose and sent me for a pet scan right away. That started my journey into having Stage IV Oralphengel Squamous Cell Carsinoma (? spelling). I also love this forum. I have gotten many ideas on how to cope, ask questions, and research new ideas. So if you go to Stanford I would really like to know who and what they did for you. UCSF is also a good place to get a second opinion. Please let us all know how you are doing!
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | Joined: Sep 2012 Posts: 6 Member | OP Member Joined: Sep 2012 Posts: 6 | Well, my worries continue. I had a modified barium swallow today that showed a prominent food-getting-stuck point in the esophagus. Clear problem. The radiologist called it a 'cricopharyngeal bar' at the pharynx-esophagus juncture but was surprised as it should not be sore and painful - vs my throat that has been hurting for 3 months now and worsening!
The X-rays in the swallow did not appear to show a mass though - should I be relieved of that? Recall the MRI apparently did not either, but i do not know if it looked that far down. The radiologist still suggested concern and that more tests would be needed. Would an endoscopy be the next step? Thanks again for your thoughts and advice. | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Sounds like that is a start to more testing. (The endoscopy) Did he say how soon they could set that up? I can only imagine how frustrated you are! And rightly so!! I would be very pushy about it to get it done soon! Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | |
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