Can't believe it everytime I think life is back on an even keele, some scare comes along again. My partner was diagnosed stage 4 2 years ago went through treatment and has been doing great apart from the regular scares that I have bored you with. He has been a bit down recently, but I thought he was pretty good and have stopped going to 2 monthly checkups with him. He has just come back from one - not with the regular consultant but another ENT guy. He initially said the consultant said he was fine and then admitted to me that he had been to the doctor last week having had some discomfort soreness and redness in his other tonsil/palette area for about 5 weeks!! Doctor said it was nothing to worry about and gave him antibiotics as did the ENT today. However he let me have a look at although there isn't a tumour per se, he has got a red area which is concievably be Erythroplakia, but having said that we have to remember that I am one to panic...but perhaps with good reason... the GP and ENT completely missed his cancer the first time round for over 2 months even when he had a bloody great lump in his neck. So casual attitudes to a red patch in the mouth of someone who has already had cancer does nothing to reassure me. I can't believe that they didnt suggest a biopsy or a follow up in a couple of weeks just to make sure. I dont really know what to do now cos he is relieved and now I am incredibly worried. any advice or sensible comments on the probability of this being cancerous would be greatly appreciated. What else could a 5 week old red spot be?

Thanks
Cathy

Cathy,

My red spot was thought to be a viral infection by two doctors before being diagnosed as cancer by the third opinion, which was confirmed by biopsy.

It was an early stage that was minimally invasive (basically skin deep). There was no raised tissue, just a red spot.

Get this biopsied.

Thanks, I have had a look and it is not as red as I had feared, more purply doesn't look like any photos I have seen but I still wish they had checked it out.

Does anyone else know whether one side of a palete not the cancerous most treated side may look more purple pigmented than the other?

Thanks
Cathy

It ok to be scared, we all have the same terrible fear, a recurrance. There are all kinds of different things mouth lesions could be. It wouldnt hurt to go to another doctor and ask to have it checked since it has been there for a few weeks.

It is okay to be scared. I am scared almost all the time, but try not to show it. I too went through issues with ENT's and Oral Surgeon's missing the cancer saying ti was just a clogged salivary gland or a dental work problem. the only thing was, I did not have any dental work. Turns out it was cancer, only my dentist pegged it, but couldn't do the biopsy for some reason. Same thing happened my second time around with the ENT that did the surgery the first time. He did not see anything to worry about, but to his credit this was all after a clear PEt scan. He decided to give me peace of mind and do the surgery turns out is was cancer again. Had I not stayed on time of it and was my own advocate nothing would have gotten done either time. Not my ENT biopsies my tongue whenever there is anything questionable going on. Which is why I am having another biopsy next week, because like your partner I have some soreness on my tongue. This is is in the same spot as the previous cancer and the white spot continues to grow. Keep us posted.

Thanks Angelia, my thoughts are with you at the moment. I am in a real fix. My partner just won't take action. I had a look at his mouth again yesterday and although there are no lumps or bumps his tonsil area definitely looks redder to me than I think it should. But he just says he has been seen by 2 doctors and I am not a medic. I can't believe he still puts any value on a GP's assessment after they failed to diagnose him and my experience reading here suggests that there is no point relying on their opinions. In all honesty he is a personality that prefers not taking responsibility for himself and finds it easier to accept what they say, not necessarily because he really believes them as he is a natural sceptic about everything else than his cancer.

He is worried about being perceived to be crying wolf and that questioning the ENT may backfire. We have pushed them for answers all along - well I haveas I had read a great deal and don't have great faith in them. Unfortunately I don't think he has a real handle on the limited scope of treatment options that might be available to him if this did prove to be malignant. Although his original cancer was on the other side of his mouth, I am pretty sure that both tonsils were included in the radiotherapy field.

It has got to the stage where I feel I have to scare him into action which is horrible, because his way of dealing with the disease - not reading too much has enabled him to get on with life to a greater extent than I think I would be able were I in his shoes. We just get into arguments and he gets really sad and worried and it breaks my heart.

My great hope is in his dentist who is also a great friend. She qualified relatively recently and is really thorough and up on oral cancers - recently got some one diagnosed whom the ENT had missed. We are going to a party with her in 10 days and I am deperately hoping I can get him to show her his mouth, but he may refuse in which case it will have to wait until she gives him a check up in 3 weeks. He may also put her down as just being a dentist!!

It is so difficult I don't know whether I am over worrying or not. But If I was in his shoes I would take Brian Hill's advice and push until I had an explanation for what he thinks has been a change in his mouth.

Ughhhh
Cathy

Cathy,
Bless your heart. If his ENT gets mad at him for getting a second opinion than that ENT is not worth the time. My ENT has sai he would be glad to refer me to other places to get 2nd and 3rd opinions if needed. I chose not to go that route, only because I trust this Dr. and have since learned he is the best in the area for head and neck cancers.

Hello again,

Update - I looked at his tonsil again this Monday and it is not as red as I remembered or maybe imagined so have gone of panic mode. Will try and get lovely dentist friend to take a look at party this weekend, if not then at an appointment in a couple of weeks. Angelia. Hope your biopsy goes ok and comes back clean. I have followed your story over the months and been really inspired by your determination to get to the bottom of things. Can't help wondering whether women are better at that than men?

Best,
Cathy

Cathy, please add a signature when you are able to. It help others respond to your posts. It also helps getting to know you easier. Much better than having to go all the way to yor original post to figure out what is going on.

Its easy to do ...click on the "My Stuff" tab then "Porfile". Type your info in the box on the bottom.

Thanks