| Joined: Mar 2014 Posts: 22 "OCF Down Under" Member | OP "OCF Down Under" Member Joined: Mar 2014 Posts: 22 | Thanks Don.
It's been very unsettling to say the least. I have my MRI in a couple of days and a consult with the ENT at the hospital a couple of days after that. I have been told they will do laryngoscopy. I'm also booked in to see a very experienced ENT on the 19/3, Associate Professor Bernard Lyons. Anyone know of him?
Also, should I ask for a PET/CT if the other tests come up clear?
Thanks for your advice that it is not cancer until tests prove it is. I'm starting to switch my thinking along these lines now, besides I have my weeding in less than 3 weeks and not even cancer can take that from me.
Cheers J.
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | JJ - I sent you a PM to answer the question you asked above.
Sorry it took so long to do so.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Mar 2014 Posts: 22 "OCF Down Under" Member | OP "OCF Down Under" Member Joined: Mar 2014 Posts: 22 | Quick update. I had an MRI today and also an ultrasound. The technician doing the ultrasound said there was nothing urgent which I assume means nothing serious from that perspective.
The MRI was a bit scary. I don't have the results yet. I was told they will be ready tomorrow. I was originally told I needed to have the IV dye injection but when I went to get the scan they said they will take some images without and only give me the dye if needed.
Can someone fill me in on why they didn't do this? Is it likely because they didn't find anything to take a closer look at? This had been my assumption.
And thanks Tony, got your PM. I'm quite inspired by all the stories I have read on this forum so far. Such positive and strong people.
Cheers J.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | HI there sorry I didn't get to welcome you before now. MRI results are normally available withing 24 hours - as are CT and PETs. NO need to wait a long time for a visit to the dr. Call and ask for the results. Also your medical system is similar to ours here in Canada. Go to your family dr. tell them your concerns, tell them what you've had done, and ask for a referral to an ENT (one who is familiar with cancer) The down under members can best tell you a good cancer hospital in your neck of the woods assuming you need one. You are quite young to have HPV related cancer. Usually it happens to people in their late thirties / forties or older. I guess it takes a long time to manifest itself. Non HPV related cancer is a possibility but usually that is found in the oral cavity. Maybe know this will ease your mind a bit. Regardless you do need to find out what is happening so a good ENT should be your first stop. hugs and welcome and hoping for an all clear.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2014 Posts: 22 "OCF Down Under" Member | OP "OCF Down Under" Member Joined: Mar 2014 Posts: 22 | Thanks for the info Cheryl. I spoke with my fiance about it. She is a medical scientist, currently doing her pHd. She was quite good at explaining a few things to me and that the chances of me having HPV related throat cancer are extremely low. She even referred me to CDC data on HPV cancers. See here: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6115a2.htmLike you explained she also explained that HPV related cancer take time to manifest. Though she said it takes along time to cascade to cancer. She also said that though they find HPV in tumors and call it HPV cancer it is likely that there are other contributing factors (not yet known) that create the environment for the tumor to form. The ENT at the hospital actually phoned me this morning and told me there was no abnormalities on the MRI which I was told was very reassuring and if there was something the chances it was missed are very low. He did say I obviously have an issue and the cause needs to be found. I guess I will have to keep at it until diagnosed The hospital ENT told me to keep my appointment with with the another ENT I made a few weeks back which happens to be his boss. Things seems to be looking positive so far. Will keep this thread updated as things progress. Thanks so much for your support | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Not sure why they didnt use the dye. I havent had one of those for a few years. I seem to remember the tech adding dye part way thru the procedure. The CDC link is almost 2 years old so it may contain some outdated info, especially using numbers from 2004-2008. Im not sure if more recent data has been published. One of the references was Dr Maura Gillison. OCF has worked with Dr Gillison for over 10 years, funding her research on HPV. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2014 Posts: 22 "OCF Down Under" Member | OP "OCF Down Under" Member Joined: Mar 2014 Posts: 22 | I was also under the impression they would add the dye part way through the procedure. They did tell me that this would depend on the quality of the images. I'm assuming the images were clear enough to draw a conclusion. In my case that there were no abnormalities. What are your thoughts? I don't know enough about radiology/MRI and their processes to draw any conclusions apart from that they have told me their was no abnormalities. I'm assuming that if something showed on the first lot of images without the contrast they would then inject the contrast dye to get a better image of the problem. Since nothing showed up then there was nothing to have a closer look at. My partner, who I have been with for 10 years is going for her pap smear and said she will be asked to be tested for HPV. SHe doesn't think she will test positive she has not had any partners before me and I only had 2 which were in my teens. | | | | Joined: Mar 2014 Posts: 22 "OCF Down Under" Member | OP "OCF Down Under" Member Joined: Mar 2014 Posts: 22 | Should I get the CT scan done in addition to the MRI? | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I wish I had the background to be able to advise you with this. Unfortunately I do not have any medical training, I only have learned from this forum over the past few years.
Good luck!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | An MRI is actually a better image so I am told. I have never had an MRI with contrast it's usually a ct they do with or without contrast. I'm sure someone will be along to correct me if I am wrong. Everything sounds good. Best of luck and do keep us updated.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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