Hi

My name is Mike, I am 29 and have just been told that I may well have a malignant tumour in my mouth.

I am very scared and also confused. My consultant said that they have sent the biopsy to a leading 'expert' in Bristol but that the results are 'highly suspicious'. The consultant told me that it was likely that when the final result comes back that it will be that I have mouth cancer. He explained what they would do next and I have already had a CT scan, x-rays, photos and blood taken. He said that he wanted to be ready to 'go' by the time the Bristol doctor gives his opinion. I feel that my consultant knows for sure that it is cancer but can not say catagorically as the biopsy report was 'hedging its bets' in his words.

I am very confused. But have seen that there is a great deal of support on here so thought I would give it a go.

Please say hello!

Hello Mike
Sorry to hear your news. It is a frightening diagnosis and there are lost of ifs and buts to this soplease do not despair too much. Think positivly as early diagnosis is helpful and you are now in the system whwtever your result. You will find many of your answers here.

Just wondering if they used the word undifferentiated when discussing the cell changes.

Hi Pauline

They have not gone into any detail yet and I feel like I have not yet been fully diagnosed as they were reluctant to expand with such a caged response from the biopsy.

I have an appointment for next Friday at the hospital where they will have result of CT scan and hopefully the opinion of this doctor in Bristol. The biopsy said to not give me any treatment until the doctor in Bristol had made his comments. I feel so totally confused by that. I feel like they want to look at it out of curiosity as I am still quite young and they do not normally see this cancer in patients my age. I kind of feel that I have to wait now for the innevitable, and I feel it is innevitable as does the consultant (else why go through the scary op I may have to have) just because an expert needs to see it.

So, in answer to your question (pardon me for rambling!!) I have no idea what cell changes are and no one has talked to me about that yet.

Mike,

I can understand your concern and would encourage you to ask your questions directly to your Consultant who is duty bound to give you the best available diagnosis and prognosis.

Ask him why the Biopsy results are "highly suspicious" and why the biopsy results need a second opinion. I too do not know the relevance of Pauline's comment on undiferrentiated cells, when I was told of my carcinoma of the larynx there was no doubt and the only treatment offered was surgical removal followed by radiotherapy. So I did not get told nor did I ask for the technical details, seemed irrelevant at the time and in any event I was still reeling from the diagnosis let alone the recommended treatment. I believed my Consultant however that there was only one treatment never thought to challenge him. Since being on this site however I may have been somewhat naive, who knows but would it have made any difference to ME if I was given less invasive treatements with a lower likeliehood of success, I doubt it.

Not knowing and not getting treatment is what is eating you up right now, and that is wrong these people know cancer when they see it which is why I am sceptical about the biopsy it should be pretty simple to detect cancerous cells I would have thought.

Go back and explain your concerns to the Consultant and demand to be told why in your case there aoppears to be some doubt, is that because the Consultant and someone else are interpretating the data differently or is it because the Consultant himself cannot make up his own mind and seeks a second opinon??

These people are experts and skilled in their profession but they are human they are not gods and they can be challenged and held to account for their action or inaction. This is not some theorteical exercise this is you and your future and potentially your life.

If you are unfortunate enough to have your cancer confirmed however there is no need to despair, postive thinking is as therapeutic as drugs or surgery, we can I believe literally will ourselves dead. Yes you do need to know the treatment and understand its consequences, any alternatives and how they deviate from that recommended and why the recommended route is in your case the appropriate treatment, you need to believe your Consultant and his arguments therefore have to be convincing so he must take time with you to ensure you understand the significance of what he is recommending and discounting as treatments.

I am sure in the greater scheme of things a couple of days delay in the treatment will have no great risk but again this is a question your should put direct to the Consulatant for I would have thought that time is of the essence to ensure that if it is cancer that it excised without undue delay.

Thanks for the advice dancing.

I do not have another appointment until a week Friday and have already got a list of questions to ask. Like you say, I thought that it would be straightforward to tell if the cells were cancerous.

The treatment he is preparing me for is removal of the suspected tumour (it sounds horrific) and potentially radiotherapy too. I only found all this out on Tuesday and it has started to sink in today hence I have been very restless and a bit teary. I do not have a partner but my family are all close and very supportive.

Understand what you mean about positive thinking. Trying hard with that! I wish I could have had your advice when I was there on Tuesday!

Thanks so much for taking the time to reply.

Hi Mike...

The initial shock of a cancer diagnosis is indescribable. It's sheer terror not having immediate answers... or knowing what will soon transpire... or what the outcome will be.

When my husband was diagnosed, it was sort of like... one day you're cruising along in life with just normal stressors... and then, in an instant, you get rammed violently head-on by a mack truck that completely knocks you off the road you were just traveling... and when the overturned wheels stop spinning, you are pointed in the complete opposite direction altogether from the route you'd always been happily traveling... without so much as a map or a clue as to what on earth to do.

Before your bewildered brain even has time to deal with the C-word... you start hearing about frightening treatments, side effects, surgeries and the like. Words you've never heard before. It can be terribly confusing and overwhelming. There is a manic flurry of activity, doctor appointment after appointment... Life is turned literally up-side-down... and you feel like a tiny boat tossing about in raging seas.

Trust me... I know the terror you feel! BUT, I also know (as my husband is now one year out and still considered to be in remission)... one day down the road, the sun will shine in your world again, Mike. You have some difficult weeks and months ahead... likely the most challenging of your young life. But, please know that others have walked in your shoes... and are here to tell about it. My husband's cancer was stage 4 (the most advanced). I thought it was a death sentence. A year later, he is back to work and doing quite well. While there are no guarantees for tomorrow (a concept that I admit to still struggle with), I am so thankful that he fought the cancer with every fiber in his body... and, so far, God has granted him a whole year of tomorrows (that, at first, I was not sure would ever come).

Mike, no one can tell you not to worry. You are freaking out... (and it's NORMAL). You will lose sleep, jerk awake feeling panicky... You will cry... Those who love you will cry... You will be angry... You may even doubt there is a God... but YOU CAN DO THIS... one hour (minute) at a time. Rely on any and everyone who offers to help you (THEY MEAN IT). Ask your medical providers any and everything you need to know. Ask for spiritual support if and when you need it. Visit this website whenever you can (or have loved ones visit for you)... and ask us anything that comes to your mind. We totally understand what you are going through now... and what you may experience along the way... And, Mike, many of us also know what it's like to have the crisis behind us... and moving on with life as best we can.

YOU ARE NOT ALONE! I will pray for you regularly by name and totally expect and anticipate a good outcome. Let us know what you learn from the upcoming MD visit. If a family member can accompany you to the appointments, it's always a good thing. If I were there, I'd give you a great big hug (and all those who are frightened right along with you). I wish you hope, bravery, strength, peace, better days, and happiness down the road, once again, when all this is behind you

From my heart,

Melanie

You are young... and this is traumatic. Don't just tear up... go ahead and cry. And thank God for your close, supportive family... They will help see you through.

Mike,

Melanie speaks a lot of sense and is like me a Believer. If you however do not yet have Faith it may all sound very "iffy" yet Melanie and I each know the power of Faith and particularly prayer, so I shall add mine to those of Melanie's.

This is not the moment to evangelise should you however Mike have even a small portion of Faith now is the time for you to invest in that and invite through prayer Jesus to comfort you, I have never known Him to refuse anyone.

Even just finding this site is in my mind evidence that He is caring for you and guiding you.

Anyway that is enough on that subject, you take care and continue to write down your queries and concerns, we often get tongue tied in the face of these "experts" you must not feel uncomfortable reading off your questions, but must also listen to the answers which may become a tad technical, and if they do you should ask what it means in plain english.

God be with you Mike as you wait for confirmation of diagnosis, prognosis and face the necessary treatment. Keep in touch, DWR

Thanks Melanie and thanks DWR! Yesterday was a bad day but today is better. I still don't know the facts about my illness but will let you all know as soon as I hear. I really appreciate your kind words.

I do believe in God and the power of prayer and thank you with all my heart for your prayers. It will mean a lot for me. I have a list of questions for the surgeon and the team on Friday and my mum is going to come with me.

It really helped my positive mood today to come home and read these messages. You have obviously been through a great deal yourselves and it meant a lot to read of the encouragement and understanding you both have given. Thank you.

Here is a poem that I wrote a while ago. I did not know I was ill when I wrote this but it seems quite apt for me this week:

Snow

It has become dark
snow falls.

Outside, the world is
following it's intuition

because it knows it must.

I sit
waiting.

I know I must.

Many thanks again for your support. God bless.

Dear Mike
My husband had tongue cancer when he was 37, stage 4 squamous cell carcinoma. He died after fighting cancer very bravely for 2 years. He never smoked or drank much alcohol, and nobody in his family has any kind of cancer. I just would like to give you some advice that I wish WE got when Dan was first diagnosed. My advice is that MAKE SURE THAT THE DOCTOR WOULD TREAT YOU IMMEDIATELY. Make sure that the doctor doesn't drag his feet with trying to figure out what you have. If you feel that the appointments are too far, and that when you go there you really don't know anything new, then that doctor is gambling with your life. My husband's doctor was doing that. My husband didn't have treatment until after 2.5 months after he was diagnosed with cancer. They knew it was cancer by taking a sample from his saliva I believe, in the office, but they had to do a biopsy and the first surgeon who did that couldn't do it because they couldn't intubate Dan.. so we had to go to another surgeon and wait a whole month for that second biopsy surgery. In the meantime, the doctor was telling us that this is a small cancer, don't worry Dan the man, and it is curable. Doctors should not be doing that to cancer patients and their family. They are misleading them and lying to them.

my friend's mother was just diagnosed with kidney cancer two days ago. I happened to call my friend and she told me that. My friend is pregant, in her 8 month, so she didn't really need this stress of having her mother sick .. the doctor told her that the cancer doesn't spread. So don't worry. He told her he can remove the kidney after 4 weeks because he is very busy. So my friend told him, can we do the surgery in JULY!!!! when I heard that I almost had a nervous breakdown. This is how people lose their life. The doctor tells them that the cancer doesn't spread, they believe him, and time passes and they are not getting treatment. So I made sure I explained to my friend that she needs to make sure that her mom would would do the surgery IMMEDIATELY. She does NOT have time. The cancer is already 5 centimeters big. The more time passes, the bigger the cancer will get for sure..

so the bottom line is that make sure you get the treatment IMMEDIATELY. Just put work aside for now, and concentrate on your health. THis is a piece of advice that I wish we got. We were just too naive, and we believed the doctor and we liked what he was saying..

Also, if the doctor offered to do surgery first, I believe that is not a bad idea at all. I wish my husband had surgery first. They tried radiation, chemo, and brachytherapy. The latter caused a horrible reaction. My husband was swollen up in his face and neck until he passed away. They also did surgery.. but if they did the surgery first, that may have increased the chances of his survival. If they do the surgery first, of course after the surgery you will need speech therapy and swollowing theapy, but hopefully you will be able to regain your speech and swollowing abilities.

Also, getting a second opinion is not a bad idea, but make sure that you have the treatment scheduled to begin with the first doctor anyway.. don't let time pass without the beginning of the surgery.

Bushra

quote:

They have not gone into any detail yet and I feel like I have not yet been fully diagnosed as they were reluctant to expand with such a caged response from the biopsy.

I have an appointment for next Friday at the hospital where they will have result of CT scan and hopefully the opinion of this doctor in Bristol. The biopsy said to not give me any treatment until the doctor in Bristol had made his comments. I feel so totally confused by that. I feel like they want to look at it out of curiosity as I am still quite young and they do not normally see this cancer in patients my age. I kind of feel that I have to wait now for the innevitable, and I feel it is innevitable as does the consultant (else why go through the scary op I may have to have) just because an expert needs to see it.

Hello Mike

Your consultant needs to be sure that it is a cancer and not just a few dysplastic cells as the treatment approach is different. He needs a expert with more experience of looking at these cells to give his view and he needs the results of the CT scan too. I know that waiting is difficult but your MDT (multidisciplinary team that includes the surgeon, the radiatin, medical oncologist and others) is there to help make the best decision for you. The goverment has set a target of 62 days for treatment to start from date of referral and all NHS Trusts are working hard to meet this target.

quote:

Hansard source (House of Lords debates Tuesday, 28 March 2006):
Lord Warner (Minister of State (NHS Delivery), Department of Health):
"My Lords, cancer patients are now being diagnosed and treated more quickly than ever before, with almost 97 per cent now receiving their first treatment within a month of diagnosis. The 62-day target from GP referral to treatment is challenging, but it has been achieved for breast cancer and for other cancers in some parts of the country. The NHS is working hard to ensure that this target will shortly be met for all cancer patients."

Let us know how things go. We will be here to help where we can.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Re undifferentiated cells. In my case they meant the cancer biopsy was of a secondary cancer with primary unknown. This piece helps explain the cell importance.

Taken from http://www.webmd.com/content/article/85/98736.htm?UID=%...AC1E-BABDBE152989%7D

"....Cancer cells fall into two behavioral categories: differentiated and undifferentiated. These terms refer to the sophistication of the cancer cells. Differentiated cancer cells resemble the cells of their origin. A differentiated cancer cell that originates in the breast ducts looks more like a normal ductal cell than does an undifferentiated cancer cell in the breast ducts. For this reason, differentiated cancer is more treatable and carries higher survival rates. Often you won't find a purely differentiated cell. It may look just moderately abnormal. Because of this, there are subclassifications: mildly differentiated, moderately differentiated, well differentiated, or poorly differentiated. These classifications refer to the cell's grading. A high grade means that the cell is immature, poorly differentiated, and fast growing; a low-grade cancer cell is mature, well differentiated, slow growing, and less aggressive.
Undifferentiated cancer is made up of very primitive cells that look "wild" and untamed, bearing little or no resemblance to the cells of origin. They don't assist the body at all and are therefore able to spend all of their time reproducing. This is more dangerous because the cells may then spread faster. There are times, though, where undifferentiated cancer is not very aggressive, despite the fact that it's a more primitive cell. This is often the case in breast cancers.
There are also mixes of these different cells, which affect the aggressiveness of the disease. For example, you can have mostly differentiated cells mixed in with a few undifferentiated cells, or vice versa. Whatever you have the most of will affect the behavior of the cancer; differentiated cells will slow down whatever undifferentiated cells exist, while undifferentiated cells will speed up whatever differentiated cells exist...."


So if you have some of this info you can research a little yourself. The thing that matters I feel is being in the system which you now are.

I also echo the others that Christian belief helped me through dark moments of this journey.

Mike,

I have looked at the other replies over the weekend and it is probably confusing you. Personally I like to have my GP's and Consultant's talk in a Language that I understand, and it is true I am afraid that we can get too much information. Balance all that has been said, lean on your family they can bear the strain, and take heed of the need for speedy decisions. I would second Danny's wife's advice of going for the most invasive option if it is feasible, many folk fear that cutting can spread the cancerous cells, but I believe this to be a myth, though there is always the difficulty that some are missed. It really depends on how far the disease has progressed at diagnosis and what treatment is optimum, we must trust our physicians to guide us here getting a second opinion in these circumstances could prove fatal if any delay ensues. God be with you Mike, and may He give you the strength and comfort to face your trauma knowing you are loved beyond measure. DWR

Mike...

How are you doing today? Anything in particular that you'd like to share at the moment? (Online screams can be typed like this... xiefjieoajioe!!diopaeao!!!!!) Feel free to "turn one loose" if you want to! I know you are still reeling from EVERYTHING and trying to keep sane and focused. The brain can only take so much scary information before it just wants to shut down. When Danny was diagnosed, I remember just wanting to sleep (to quiet my racing thoughts), but sleep would come only in short spurts and was often accompanied by nightmares, then awaking in a cold sweat.

Phase One is quite difficult and please know that we are thinking of you, Mike, and hoping you are doing at least "okay enough" under the circumstances.

Hope to hear from you soon.

Still praying...

Melanie

Hi all

Thank you all so much for posting. I have just sat and read through all the replies and feel I can take it in now.

I have been away from the site this week as I have been trying to distract myself this week waiting for news on Friday. I will be meeting the multi-disciplinary team then and will hear about my treatment plan.

I have put my faith in God and will trust him to do what he knows is best for me. My family are praying hard and their strength is helping me. I have not cried for a week!

I really appreciate the support on here and I will let you all know what news I get on Friday. My mum is going to come with me. I am adopting the positive approach and that at least is helping me get through each day, each moment.

Thanks for all the advice and support. I'll log back on Friday and hopefully have some postive news.

Thank you so much to those of you who have included me in your prayers. It means a great deal to me.

Mike,

Today, being Friday... I'm thinking of you, Mum and all your family with fingers crossed.

Going out of town for the weekend, but I'll be looking for your next note upon my return.

Melanie