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#193763 01-16-2017 08:19 PM
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Yorky46 Offline OP
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I've been reading your forums and all the stories from the amazing strong people who post here. its the middle of the night but i just cant sleep and feel so scared. i just feel like bursting into tears all the time.

I'm a 46 year old male from England.

I have never smoked and dont drink anymore as I have a fatty liver although i did drink in my youth but never excessive.

for the last 3 weeks ive had a 2x1cm shallow lump on the left side of my hard palate. However, the actual "sore" area seems to be larger than just the lump and stretches towards the centre. It feels solid and doesn't move and doesn't seem to be an ulcer or a cankersore (from pics ive seen on the net). The surface is smooth but it is a very slight different colour to the rest of my hard palate in the dip portion. It doesn't hurt but it is a little sore especially when i press on it or run my tongue firmly over the lump.


Its the first time ive really studied my hard palate and I'm a little shocked as most of mine (in the dipped area) seems more yellow/light than a nice pink colour that most people seem to have. This has totally knocked me for six and I pray each night that it will have shrank overnight but each morning its the same. Whenever I look online all I seem to see is cancer and when i find a pic of a hard palate that looks like mine its always for oral cancer. As my lump is on the left i know its not torus. i seem to be running out of options of what it could be and I'm now convinced this is malignant.

The extra worry for me is that for the past 6 months ive noticed I seem to be struggling with swallowing saliva, especially at night. I can eat and drink fine but swallowing saliva is a struggle and feels like its getting stuck. I originally put it down to anxiety but now the lump has appeared and I'm wondering if this is related.

I have a wonderful wife and two fantastic children and the thought of not being here for them is scaring me. How will they cope as we have a mortgage.

I'm now not sleeping and my anxiety is through the roof and I'm finding it hard to concentrate on anything else. i have hidden my worries from my wife until i have seen the dentist and/or the ENT but I'm finding myself getting emotional all the time.

i see my dentist on Wednesday but he isn't an ENT professional so he will probably send me for a referral to my local hospital. As we have the NHS in the Uk it could be a while before i get the referral and get any results.

Does this sound like hard palate cancer? If not what else could it be? I am so worried its a tumour...as i know the prognosis is poor.

sorry for my long post......


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Welcome to OCF! Please do yourself a huge favor stay calm and avoid Dr Google. It sounds like Dr Google is fueling your anxiety by taking you from having a sore to not being here for your family.

Im sorry but I only know how the medical system works in the US, so Im writing this in that way. Find yourself an ENT who specializes in treating oral cancer patients. You do not want the type of ENT who mainly puts tubes in kids ears. Its likely you will have a few visits until you know what you are dealing with. An experienced ENT should give you a thorough oral cancer exam. They can only give you an educated guess as to what the sore is. Only thru taking a tiny tissue sample (biopsy) will they know for certain. Even with years of medical schooling, clinical practice a biopsy is necessary. Its not possible for a patient to diagnose themselves by matching online photos so please convince yourself that you do not know what it is but you will find out. Earlier I advised you to try to stay calm. Its likely to be a few weeks until you get the results.

I know its not easy to stop worrying. All the worrying in the world will never change a test result, it only makes you feel bad. All that extra stress you are burdening yourself with is NOT helpful in any way. At this point its way too early to be upset about having a poor prognosis. The sore could be any number of minor things which are easily treated. I also recommend leaving the sore alone, dont poke it or keep rubbing it with your finger or tongue. Take it step by step, one day at a time. Try to stay super busy so the time passes easier. Repeat as often as necessary... its NOT cancer until the biopsy says it is. Try your best to go about your regular life. Even if it would turn out to be cancer, it is not an automatic death sentence.

Wishing you all the very best with this. Please let us know how you make out with the biopsy.




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
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Posts: 16
Yorky46 Offline OP
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Hi christine

Thank you so much for replying. I am really trying to stay as calm as i can. Getting sleep is proving the hardest part. The anxiety of it all is preventing me falling asleep and yet again i find myself up in the middle of the night for the 4th night in a row. Tonights big worry is how long has this lesion been in my mouth without me noticing it. I cannot feel the lesion very well with my tongue as its painless, smooth and almost flat so im worrying if its been there months and ive not spotted it until 3 weeks ago when i felt it with my finger. I wonder how long its been spreading and if its now also elsewhere in my body. Like you say getting an answer and knowing what im facing will actually help as i can focus on beating it. I guess fear of the unknown is always the worst.

Work is proving hard to concentrate but at least its keeping me busy i guess. Im an accountant so staying focused and not making mistakes is the hardest part. I am trying hard not to think about it but i was sat at my desk yesterday wondering if i would even be sat there in a few months or if i would be battling the hardest fight of my life. I just keep hoping its all a horrible nightmare and im going to wake up and its all a dream....if only!

Reading your reply has helped so much and you are 100% correct in everything you say. I cannot thank you enough. Just knowing someone else in the world understands what im going through makes a massive difference. I so want to be able to talk to my wife about this as we are soul mates and are always there for each other but i am not burdoning her with this until i now more.

The NHS is a strange one. On one hand its totally free so no worry about medical inaurance or bills, but on the other its painfully beureacratic and takes forever to get through the system. It also means you get whatever doctor/ specialist you are assigned. Once you are under a specialist you then only deal with that department and they book everything. So once i finally get the referral i will be checked over and an appointment will be made for ct/mri/biopsy. Unsure which order they will be done. All long winded and time consuming.

im hoping my dentist can get me an urgent referral. Thats all im expecting from wednesdays appointment with the dentist. I dont expect my dentist to know too much about oral cancer (especially hard palate) as they tend to concenttate on teeth. Like you say. Its the biopsy that counts. There opinion is meaningless except i need him to get me that referral to the specialist.

We actually have a trip to australia booked in 3 weeks (for 16 days). My wifes brother lives there. This holiday has come at a bad time although it has been booked in for a year. I fully expect i will get my referral to the ent specialiat while we are away. I really wish we could change the dates but flights are non refundable and have cost thousands. Those 16 days are going to prolong diagnosis and will also mean an extra 16 days in starting treatment or having an operation if they find its cancer.

Part of me wants to cancel the holiday and take the hit on the flights. But my family would be devastated, especially my wife who is so looking forward to meeting her brother as its been so long. As i wont have a diagnosis it also means 16 days of tumour growth and the prolonged torture of not knowing if i have cancer. If this is cancer i know that surgery is going to be horrendous when dealing with the hard palate. Thanks to the internet it is now in my head and i cant unforget what hard palete cancer entails i cant unforget the poor survival rates and at best massive permanent disfigurement for the rest of my life

My nephew is also getting married in may. If this is cancer that will probably be when i am having or had major surgery so i may not even make that.

I think im struggling due to the fact that my life basically hangs on the outcome of what this tiny 2cm lesion in my mouth. Its surreal.

Will 16 days make a massive difference to the prognosis and outcone if treatment is needed? I guess i mean could those 16 days make a difference to the stage of the tumour and the outcome of my treatment?



Last edited by Yorky46; 01-17-2017 09:06 PM.
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I am a 3 time oral cancer survivor and like all of our members, I do not have a medical degree or background. Ive learned a ton of info by reading every single post and all the info from the main OCF site. After almost 10 years, a lot of it has sunk in smile

You are making yourself upset about the unknown. You do not know if your tumor is cancer or even what it is. Somehow you are fast forwarding the situation into a death sentence before you have consulted a physician. This way of thinking is not only unproductive but also making everything so much more difficult than it has to be. Do yourself a big favor and stop all the negative thinking. Currently you are a healthy adult who has a very good career, planning a wonderful vacation with your family. Do NOT let this cancer scare steal your time and happiness away from you.

You have control over what you think about. You have control of your emotions and the choices you make in life. At this time no terminal diagnosis has been given so it would be much easier for you if you started looking at this a different way. Practice the following until it becomes second nature... When you start thinking negative thoughts about the "spot", allow yourself only 2 minutes to think about it. Thats all the time you get, then physically get up and "change the channel". Go read a book that holds your interest, start a hobby or home improvement project, go on your vacation, just do something that is positive and requires concentration. This is a way to start getting some peace of mind about your situation.

Until you can get a handle on your thinking, cancer (which you dont even know if you have) is ruling your life. The fear of the unknown is in control right now, not you. Cancer is stealing precious moments away from you (and your family) right under your nose. Your life should NOT be ruled by a teeny tiny "spot"! Being an accountant, you must be a very intelligent person. To me, that means you can overcome the end of the world way of thinking.

As someone who is disfigured after going thru 3 rounds of oral cancer in 3 years, my life can be difficult at times. My scars cant be hidden, Im missing half of my lower jaw. Im fairly certain IF it turns out you would have cancer that you would have a surgery like I did. Remember, take this day by day and dont get too far ahead of yourself.

If you still are struggling mentally after trying several of my suggestions, maybe its time to see your family doctor to ask about anxiety meds and seek out a therapist to help you better manage your emotions? It couldnt hurt. Just make sure if you would get meds to ask about how long it takes until you notice a difference. Some of those meds can take weeks until any improvement is seen while others work for a bad day here and there. Make sure you relate everything you wrote here to your doc so they know the entire story and can better help you.

Hang in there!!!!


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
Joined: Jan 2017
Posts: 16
Yorky46 Offline OP
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hi christine.

Yes you are totally correct. I am being way too negative, many apologies if i am coming across that way. Anxiety and depression is a horrible thing. The silly thing is i am quite strong in every other aspect in life. The anxiety is actually showing physical signs now as i have found my struggling to swallow saliva is getting worse ( absolutely fine when drinking or eating) but last night couldnt get my throat to do the swallowing action. I am 99% sure this is anxiety related to have come on so quickly.

So i am going to ask my gp for some medication to help with this anxiety.

I feel a little embarrassed at these middle of the night ramblongs especially when you have been through so much. You have my upmost respect and do a fantastic job on this site.

I visited the dentist yesterday who didnt have a clue. First she said it maybe was a problem with my siliva gland but later seemed to come away from that idea. In the end she said we will give it another 2 weeks and said if it still hasnt gone down she will refer me to the hospital. I explained that i have had this quite a while already but she still wanted an extra 2 weeks wait time.

Do you think i should bypass this and go see my gp and see if he can get me an urgent referral before i go on holiday? if i wait 2 more weeks i wont be getting any referral until after australia

Dentistry is the only opart of the medical service that is not covered by the nhs. So that cost me £20 for a 2 minute conversation.

Last edited by Yorky46; 01-18-2017 10:07 PM.
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Hi Yorky,

Welcome to the forum. Please don't beat yourself up for worrying. Cancer is a dreaded disease and it's only natural that you feel depressed and anxious.

I am from Canada and we have social medicine as well, similar to, though not exactly the same as the NHS. It does have wait times -- a referral from the GP to see the ENT may be five to six weeks, and the province of Ontario has a target of six weeks between a positive diagnosis to the start of treatment. There will be preparatory steps to go through, like a biopsy, getting a mask made (if case of radiation being ordered), and getting the teeth examined by a dental oncologist to ensure that the teeth are protected., etc. These fill up the time between the diagnosis to the start of treatment. We also don't get our own choice of doctors, but we can be confident that the doctors know what they are doing at the cancer centre. Really, my personal view is, we have to trust our doctors wherever we end up for treatment.

The holiday to Australia is a sticking point and the money paid is not the only issue. I am sure you and your family will be disappointed if you can't make the trip. However, is it possible to delay the start of treatment (if it is necessary) for a couple of weeks or get a refund from the travel agent if you have a doctor's note stating you are "unfit" to travel? I am not saying you will need this, but just in case, these may be possibilities.

I am hoping that you won't need our advice at all. It is that sometimes it is hard to see over that wall that's our fear.

Wishing you the best of luck!



Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Yorky46 Offline OP
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Hi

Well ive decided i need to see my gp asap as my lump has gone wierd in the last 24 hours.

Literally overnight the lump which was the same(ish) colour as my palate is changing. A sore has popped up next to it and the rest of the lump seems to be getting sort of red dots and sort of micro veins in it. The whole lump is getting redder by the hour. Its not getting any bigger though just the colour. I can feel the lump in my mouth now, its not so much painful but tingling

Surely this cant be good but i didnt think things could change this quickly. I took a pic of my mouth yesterday and took one this morning and i can see the lump getting redder sort of spreading from the sore. Every picture i take i can see more of the lump is red...its absolutely scaring ne stiff.

If this covers the whole of the lump it will be just a little smaller than one of your dimes. The one thing i kept saying to myself was that the lump was not red or white or ulcerated but now im freaking out. Ive not touched my lump at all for the last couple of days so its not like ive aggrivated it.

Also ive noticed that feeling of a lump in my throat has also gotten worse. It feels like there is something at the back in my throat that wont go down. Food and drink is still fine.

The new sore is also quite painful. I see my gp on tuesday, by the time that comes the lump will be completely red.

Does this sound like cancer to do this so quickly?

Last edited by Yorky46; 01-22-2017 03:39 AM.
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To answer your question and to echo the fact we're not doctors, IMO, no, what you describe is not typically how OC presents itself.

With respect, your post indicates a high level of anxiety (health anxiety). I do recommend seeing your GP for two reasons. Reasurrance (which is just a band aid over an open wound) and to discuss your reaction to what I feel will be a benign issue. As was suggested, discussing your anxiety and how to manage it would be prudent.

Good luck and as always...

Positive thoughts

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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Yorky46 Offline OP
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Hi

its been a couple of weeks since I posted. ive been trying to keep off the internet as you advised.

The lump is still there and the dentist is referring me to the max facial department at my local hospital. I asked why not the ent dept and she said that max/fax deal with mouths. She also said its the nhs so the appointment wont be until after my holiday.

I don't know if I mentioned but ive been having pains in my ears for the last month. They also feel blocked especially when I swallow. Ive noticed my tonsils and throat are also red {not swollen though} and the glands under my chin are both swollen and tender either side. { I think they are the submandular glands} I am still struggling to swallow saliva, could all these be linked?

Rhe ear ache is the worst bit as it quite painful and keeping me awake. Does anyone know what could be causing these symptoms?

Last edited by Yorky46; 02-04-2017 10:29 AM.
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Has anyone on here had nasal or sinus problems before radiology/chemo? Maybe nasal sinis cancer? I noticed that my left nostril feels almost blocked. Not a full blockage but certainly much harder to breathe from. Ive also been reading about the nasal cycle but that doesnt seem to be affecting my nostril breathing.

I hope its something thats as simple as deviated septum but it seems a mighty co-incidence that i have this growth on my hard palate so im now wondering if i have something growing downwards into my hard palate from my sinuses.

Im trying not to get to carried away with my thoughts but its making more sense as ive had sinis problems for years and not put 2 and 2 together asthe other nostril compensates my breathing. It would also make more sense as i dont seem to fit oral cancer profile where as nasal cancer profile is less about alcohol and tabacco usage.

I did have a ct scan around 5 years ago when doctor thought i may be nasal drip.

Im wondering how ear pain could be linked to this and wonder if the growth is large enough to effect the ear tubes. I have also been getting a numb area on the front of my nose. Could this be link

I really wish wasnt going on holiday and wish i could get this looked at. I know this is going tp be on my mind the whole time. I wonder what the hell is going on up there to cause this. All i can think about is the poor prognosis and how my face may be altered.

Sorry for venting again.

Last edited by Yorky46; 02-06-2017 12:34 AM.
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