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#187058 12-06-2014 12:24 PM
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Hi this is my first post. I'm after a little advice and support. I came across this forum today and decided to join. In June last year I had a cervical discectomy and fusion. On two levels in my spine. For this op they made an incision in my throat to get to the discs in my neck.
A couple of months after the surgery I felt as though I had a lump in my throat. I told the spine specialist about this and he felt around my neck and said that it was probably just that as they had cut into existing scar tissue it was probably just a build up of scar tissue. (I was scalded when I was little and had skin grafts to my neck and arm) . He arranged another appointment six weeks later to see how my neck felt. To see if there was any change.
There was no obvious change but he just said that it is just something that they can't do anything about as trying to remove the scar tissue would just cause more scar tissue. He said it could make things much worse..
Fast forward to twelve months ago this feeling has become much worse. I visited my gp. Who was not very sympathetic. He said the same it's just scar tissue. Nothing can be done. At the time I also pointed out that I had a sore patch on my tongue which was quite red and inflamed. The gp said I had thrush and gave me drops for thrush medication. This did not help the soreness at all. It had no effect. I have since tried over the counter thrush gels with no help.
I gave it another month and made another month and made an urgent appointment. Stopped taking my anti inflammatory meds for my neck so that the lump in my throat would be more obvious. Again I points out my sore tongue and the gp reluctantly referred me to the ent department at the hospital. He was very impatient about it. I waited and waited and no appointment arrived. However he did order a basic b12 test and thyroid function test. Which came back as within normal range I just kept thinking I'll give it a couple of more weeks. But stil no appointment. So a couple of months ago I again made another appointment with my gp but this time with someone else in the surgery. This time the gp ordered a scan on my throat. Which I had at the end of September. This gp assured me that the previous gp had referred me but he had put on the referral no palpable lump.
Soon after the scan I received the appointment with ent.
At my first appointment he put a scope with a camera and light up my nose. To check out my throat. I again pointed out to him the sore on my tongue which has gradually become much worse. He had been told to look for tumours. But said that he can't see any tumours inside my throat. I know that was not written on the original referral. As the second gp read out the referral to me. So I'm presuming that this was as a result of the scan.
The ent dr did say that there does appear to be a mass close to my oesophagus and close to the site of the original incision. He said that it is probably a lymphatic blockage and there is evidence that there is nerve damage in the area. I have problems swallowing. He ordered a barium swallow test and a chest X-ray. Both have been done but I've not yet been told any results. He also referred me to an oral and maxillo.facial surgeon. This appointment came through last week. About a week after the barium test. The ent doctor was evasive about why he was referring me to oral surgeon. But when pushed said that it may be a vitamin deficiency. At this I just thought. Yes probs just b12 and it needs checking again. So I didn't worry about it. I had this appointment about a week ago. Still I thought probs b12. As my dad and my grandmother both have pernicious anaemia.
I got a hell of a shock when the oral surgeon looked grim and said that I need a biopsy on my tongue as I have a large lesion on my tongue. I was told that I will probably have to have a couple so stitches in my mouth. The biopsy is on Monday. I phoned the hospital yesterday and got through to the switchboard. They put me straight through to the oral surgeons secretary which is practically unheard of when I told them my name. She told me the procedure is on Monday.
I just need some advice. What is other peoples opinion. Is it possible that the feeling in my throat is unrelated. And is just scar tissue. I'm really scared now. I just wasn't expecting this. I keep looking at my seven year old son and wondering if I'll get to see him grow up. Also I am a beauty therapist. I also smoke. I am wondering if it is possible that doing acrylic nails can cause cancer. As I did those for about a year but stopped doing them because the monomer liquid used to make me feel unwell. It would make me cough and splutter.
Sorry this post is so long but it is a long story. I'm just so angry that my dr wouldn't listen to me. I felt like I was unheard. If this is cancer then it has had plenty of time to spread.

Mon #187059 12-06-2014 12:36 PM
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I also had a check up with my dentist a couple of days ago. I asked him what he thought. He obviously felt put on the spot. He just said that there is no way of telling as the lesion is more than two cm. he didn't say anything that could make me feel better.
I have not had a check up at dentists for over a year. Just wish I had now. But I presumed the sore tongue was medical.
I hadn't really thought to much about it. It never occurred to me that it could be a tumour. Before it just looked like a red patch. I haven't really looked closely at it. But looking at it now. It looks like an ulcer but sort of hard granular in the center of a large red patch. The lesion is at the back part of my tongue. In the middle and is clearly visible. It

Last edited by Mon; 12-06-2014 12:55 PM.
Mon #187060 12-06-2014 01:40 PM
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Welcome to OCF! Our group is made up of OC patients and caregivers. We really arent qualified with medical backgrounds to make guesses as to what your condition is.

To me, it sounds like you are in the right place. Only thru a biopsy will you know for certain what is going on. Even the most experienced doctor can only make a guess what it could be by looking at something. Many family doctors and even dentists are not familiar with oral cancer and are not able to diagnose someone.

There are so many known cancer causing additives in tobacco. I would be far more concerned about the tobacco than acrylic nails. Let this be your wake up call even if it turns out to be nothing serious... QUIT SMOKING! Sooner or later it will catch up with you. Im a former smoker myself and know its not easy but you really need to make the decision to quit and do it. Tobacco causes all kinds of things and eventually it will affect your health negatively. If you cant do it for you, do it for your child.

Please keep us posted. Best wishes!!!


Christine
SCC 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 smile
Mon #187061 12-06-2014 01:51 PM
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Thank you for your message. I have tried numerous times to quit smoking but find it so hard. But I do intend too. Now every time I smoke I really dislike it. This has come as a huge shock to me. I have managed to cut down drastically. It has been just over a week since I saw the oral surgeon. I would have quit there and then. But I know that if idd it immediately I would probably get a sore mouth for a couple of weeks. Which I know does go away.
I just thought it best to wait for the biopsy. Which I knew would only be within a few days. Because I don't want to turn up and be told that they can't do it cos my mouth is sore. But as soon as the biopsy is done then the smoking goes with it. This is a hell of a wake up call. I am really scared. I'm only forty five and I do want to be around for my little boy. He needs his mum. Especially as we lost grandad back in September too. ( his dad's dad. ). I do know that the smoking has probably caused this. I'm just wondering if the monomer may have somehow contributed to it. Or if even the surgery last year may have triggered something.
All I know right now is that I'm really really scared right now. Just got to hope and pray. X x x

Last edited by Mon; 12-06-2014 02:39 PM.
Mon #187064 12-06-2014 03:09 PM
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Welcome to OCF! This is a wonderful place to get cancer support directly from many who have gone through this experience.

Even though there was a lot of history of maybe missed opportunities, you now have a biopsy scheduled for Monday. That is great! A biopsy is the only sure way to know if this thing is cancer or not.

You are certainly worried and all sorts of thoughts are flying around your head. We have a saying there that you can repeat all weekend long - "It's not cancer until proven".

Ask what the turnaround is for results. One good thing about biopsy on Monday is there is a full work week to get things processed. Find out how the results are getting routed and you can followup to get your reports as soon as it becomes available and not sitting in someone's work folder for a few extra days.

Good luck.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Mon #187065 12-06-2014 03:35 PM
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Thank you. At least the hospital are not messing around that's something. I just wished my gp had listened to me. I've known for a long time that something is wrong. But my gp just wasn't interested at all. The last few days have felt like a big daze. It was so hard telling my partner that I need a biopsy. I've tried to play it down. He lost his dad back in September so it is a hell of a blow for him. I know he is trying to be brave. But I know he is hurting so much.
If it does turn out to cancer. I've absolutely no idea how I'm going to tell everyone. I just want things to get back to normal. You have a good point that Monday is probably a good day with a full working week ahead. I did get an ent appointment through today. It's not untill January. So I'm guessing the chest X-ray must have been ok. Not so sure about swallow test though. The ent specialist said the test he wants to do he can't because of my spinal fusion. He said there would be a risk that it could break the fusion. Well I'll just try to be calm this weekend.
How long does the biopsy take to heal. Will I be ok to go back to work on Tuesday. I don't want to much time off as I'm self employed and coming up to Christmas is the busiest time for me. X

Mon #187066 12-06-2014 03:38 PM
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It sounds like your healthcare providers aren't very good. Many of us went through similar processes but yours sounded much worse than what I went through.

You seem to want to make a deal. I will smoke and not worry if someone can convince me the nails caused my cancer. Things don't quite work that way. You may or may not discover what caused your cancer, assuming your biopsy I dictates such. You know the dangers of smoking but you are choosing to just let it go. That makes no sense. Either it's important enough to quit or it isn't.

I hope your biopsy goes well and the level of care is improved.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Mon #187067 12-06-2014 03:45 PM
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My drs are hopeless. More interested in saving moneys often takes several trips before your referred. I will be changing my gp after Xmas. It took four trips to gp before they sent me for an MRI with two major ruptured discs. That says a lot. Just wish I had changed then. Takes a month to get an appointment. That's how bad it is. Have also heard of several other people having similar problems.
No I do want to stop smoking. I did ask my gp for help but got refused. I'm just looking at all possibilities. Trying to make sense of it all. As of Monday I will not smoke again. It is something I've struggled with for years. But come hell or high water the cigarettes are going. X

Mon #187070 12-06-2014 04:42 PM
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If you are planning on changing doctors, now would be the time as you may be with them for the rest of your life. Something to consider.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Mon #187072 12-06-2014 04:57 PM
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Thank you. I'll look into it. At the moment. My head is just all over the place. I think it is fairly easy to change drs in the uk. But I will check it out. As we don't have to rely on insurance. But right now I have absolutely no confidence in my drs. X x x

Mon #187076 12-07-2014 05:40 AM
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I bet it is. Some of the initial shock will begin to wear off and you will have some good information after the biopsy. Try to keep calm and keep things moving.

You might want to add your location in your profile. You may have survivors in your area.

Best wishes for the best possible news on your biopsy.

Last edited by Uptown; 12-07-2014 07:52 AM.

SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Mon #187079 12-07-2014 11:30 AM
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Ok thank you. Yes I think I am still in shock. It was totally unexpected. I actually thought they would just order blood works to check my b12 levels. Last thing I expected was to be told that I need a biopsy. I will keep you updated. Just hope my tongue isn't too sore after tomorrow. X

Mon #187083 12-07-2014 05:25 PM
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Good luck tomorrow. It's late now in the UK so hopefully you get good rest. There is nothing positive that comes from worry at this point. Lack of sleep and anxiety surely are not good.

Depending on the type of biopsy, you should be able to get about your normal business in a day or two. If you must talk alot as part of your job, then there may be a few days of speech issues and some pain. Make sure you get some pain meds straight away. You can always withhold them if you feel ok.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Mon #187094 12-08-2014 02:16 PM
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Hi there , I'm Di for Marple Cheshire ( not far from Manchester) I finished my treatment for stage 4 tonsil cancer just 12 months ago. I'm doing really well but I won't kid you its a long difficult road you have to travel should it turn out to be bad news . I was treated at The Christie in Manchester cancer specialist hospital and I cannot praise them highly enough . Dr Sykes was my oncologist he's very experienced. Let us know the results of your biopsy I pray it's not cancer but if it is your in the right place you will be helped and supported every step of the way.
Stay focused thinking of you Di x


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Mon #187096 12-09-2014 02:41 AM
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Hi I'm in wrexham north wales. Not far from Chester. Yes I think most people with cancer in my area are treated in christies. I've had the biopsy now. Just got to wait for the results. They have said it will take three weeks. Probably because it is so close to Christmas. Got to go back on the 2nd of January for the results. I have a feeling it will be the longest three weeks of my life. I think they have to send the sample off.
Today my mouth is really sore. Got four stitches. But they are very fine stitches. I would say the incision is about two cm by two cm. the dr who took the sample said that she wasn't able to cut the whole thing out but had to shave a piece off. She did say that monomer from me doing acrylic nails may have been a contributing factor. Just got to wait now for the results. X

Mon #187101 12-09-2014 09:17 AM
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Hi again, yes the waiting is grim, 3 weeks seems along time to me , I had my tonsil removed a CT scan and multiple biopsies taken and had the results in 13 days I think mine was a for gone conclusion. Had severe trismus and ear pain and 4cm tumour sitting on the left tonsil but as they say around here it's not cancer until the biopsy says it is. Also had a polyp removed and biopsied a couple of months ago which thankfully was okay and that took 8 days , I'm thinking once your in the system things move quicker maybe but I would push and ask if had been marked urgent as that too can make a difference. My daughter in law is a beautician and nail technician so I find what the Dr said to you disturbing. Mike my other half and I are going to a head and neck support group tonight we find it really helpful they don't have one at The Christie unbelievably but a hospital quite local to us does so we're off there tonight it's the Christmas party met some really great people . Try hard not to let this dominate your every waking hour ...... I know not easy.
Love and hugs Di


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Mon #187107 12-09-2014 02:45 PM
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Yes three weeks does seam like a long time. But I guess that is probably because of the holidays. All I can do now is wait and just hope for the best, would have helped to know sooner as this will be hanging over my head all through Christmas. Aww bless you sounds like you have been through the mill. It must have been so hard. I hope you enjoy your support group. Sometimes it does help a lot to just talk about it. X x x

Mon #187120 12-10-2014 12:09 PM
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Hi there ,
Just checking your okay ? The support group was great thanks, sadly a couple of new members joined last night they where just starting out on their journey and asking loads of questions which is good but always sadden 's me that another person has to get through this awful treatment. Hoping sincerely that you don't have too but we're here for you should you need us. I've been on a training course today from work come home shattered still struggling from fatigue and I'm very anaemic and have been since my treatment plus the radiotherapy has left me with an under active thyroid, so it's pyjamas and bed for me now! Lol xxx😀


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Mon #187124 12-10-2014 01:52 PM
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I'm ok thanks but I have to admit I am quite scared. But I guess that's all part and parcel of it all. Glad you had a good night at your group. To be honest I had never even heard of oral cancer before this. So it is quite a shock to my system. Especially as no one in my family has ever suffered with cancer. Well my dad had a melanoma but he was lucky because it was on his nose and had no where to go. So he just needed some surgery and has been fine since. That was nine tears ago.
I hope you feel better soon. It's hard your feeling so unwell all the time. X

Mon #187130 12-10-2014 10:24 PM
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Waiting is such a drag but so common in the cancer treatment game. Rush for test, wait for results, rush for treatment, wait for results.

Do these results typically take so long to be completed? That seems like a very long time to turnaround a test. Certainly does not help with getting on with it.

Good luck


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Mon #187133 12-11-2014 03:35 AM
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"OCF across the pond"
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Hiya wouldn't be normal if you wasn't scared. Bit like you no cancer in the family parents both fit and well in their seventies , never smoked hardly ever drank maybe 1 glass a year , live a very healthy life style but this disease doesn't discriminate! Had a call from the Doctor this morning going in for blood and thyroid results on Monday . Going Christmas shopping today they don't call me last minute Annie for nothing! Xxxx


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Mon #187214 12-15-2014 09:45 PM
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Personally I would make a pest of myself until I got the results. It shouldn't take that long. Call daily - don't be rude just say your terrified, cry if you have to smile hugs


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
Mon #187611 01-12-2015 05:02 PM
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Hi all thank you so much for all your support, my head has been all over the place. The good news is I don't have oral cancer. I have now had the results. They are not sure what it is. But they have taken blood tests to check that it not a b12 deficiency. Or some type of anaemia. My dad has pernicious anaemia and so did my grandmother have it. They have also given me some medication to see if that will help. This as you can imagine has been a huge relief. I still don't know what the mass in my throat is. But I have to return to ent to see them tomorrow. Not too worried about it as had other tests weeks ago and they have taken there time in getting me back in.
Thank you all for the support it has been a difficult time for me.

Mon #187623 01-13-2015 08:46 AM
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"OCF Canuck"
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Let me tell you to be diligent. If your issue persists go back until it is solved. hugs. and so happy for you.


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
Mon #187683 01-16-2015 10:52 AM
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Hi again , phew what a relief so very pleased for you. Thank you for the up date I have been looking out for your post.
X


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
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Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

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