Hi,
Im confused and can not get a straight answer. My mum was diagonosed with Tongue cancer in August 08. She has 3 ulcers on her tongue that wouldnt go away. She went to her doctors 4 times before they sent her to hospital for a scan as they realised it may be more serious. She then had an operation to remove the tumour on her tongue in september 08. She bascially had half her tongue removed. She also had her glands removed as a precaution aswel as having a deep skin graft from her inner arm to replace the flesh etc on her tongue. All was going well until last week when she started her radiotherapy as was told she has squamous cell cancer and it was terminal with 6-12mths to live. Well as you can imagine we are in shock and trying to get our head rounds this. DO you know the most saddest thing is because she is numb on her neck area because of the operation she never felt anything. Its seems to be growing quickly as she developed a lump in her neck area within a weekend. MY Question or questions are.
How do i know if the squamous cell cancer of the neck is secondary cancer and not the primary cancer as i have heard its a small cancer that can be undeteted.
Also how long do they really mean she has to live. ?
Will the cancer spread to her brain ?
Is this how she will die ?
Please give me any information that can help me move on.
I can ask macmillan at the hosptial but i dont like to infront of my mother. They wont advise anything to me unless they can tell my mother first.
I feel lost, angry, confused and sad.
Thanks

Hi Dawn,

I am so sorry to hear about your Mum and the awkward situation you are in. My partner has just been treated for locally advanced squamous cell carcanoma - was diagnosed when they found a lump in his neck. The primary cancer was in his tonsil. Patient confidentiality makes it very difficult for relatives to ask medical staff searching questions. I have found this incredibly difficult as I dont want to upset him. However, I sense that some medical staff realise how difficult this situation is and will respond to relatives if questions are posed in very general way. I wonder whether they would be willing to answer your questions if your mum gave her explicit consent for you to find out more about her options?

I would phone up McMillan and explain your predicament and see whether they can advise you how to proceed. I am afraid I would not ask MacMillan nurses the kind of questions you have posed here – these are, in my experience, better answered by an onocologist. Head and neck cancers are very complex and I doubt whether anyone here would be able to respond to your questions without a lot more specific information about your Mum’s condition…and probably not even then. When I read your post I couldn’t help wondering whether the cancer has spread to other organs beyond the neck, which might explain the prognosis?

If you are not happy with what your local hospital tells you, you are probably entitled to a second opinion – perhaps speaking to head and neck specialist centre like the Royal Marsden might help. Your GP may be able to help: http://www.cancerbackup.org.uk/QAs/LivingwithcancerQAs/...related_faqs/QAs/613

Sorry not to be of more help

Cathy

Hi, I'm Dawn's sister! I googled "mouth cancer forums" and found this site and found my sister already on here! I talk to Dawn everyday and see her alot too and like her am TOTALLY confused. I have seen oncology nurse today along with the macmillon nurse and they examined mum after her radiotherapy and seemed pleased that her neck felt softer and seems to be responding well to treatment!! But what I really don't understand (and I have asked MANY questions to them) is that in such a short time the cancer has spread round her neck so much so that all they can offer is pallative care! When just under 2 weeks ago she was on the mend, about to start radiotherapy after a neck dissection operation!! has anyone experienced this or know of anyone that has? One minute she's a success story to being told (and the oncologist diagnosed mum just by visual inspection only (no scans at that point) that she has neck cancer and will die!! I just can't get my head around this!! If a doctor reads this please can you explain??
Help??

Hi Sarah,

I do feel for you so, you are experiencing something that I truly dread. As I said to Dawn, the only people that can really answer the questions that you so desperately need to understand are the consultant onocologists who have been treating your mum. I think you have every reason to be upset and angry and you do have the right to know exactly how and why your Mum's condition has deteriorated so rapidly. A few people have posted about similar experiences here - patients that appeared to be doing well suddenly being struck by distant metastic spread to other organs, so your experience is certainly not unique.

If I were you, I would explain to your mum that you want to find out more about her options and perhaps seek second opinions and ask her to give her explicit written permission that will enable you to do this. You should then DEMAND to see the consultant onocologist that gave your mums prognosis and ask him/her to explain exactly what has happened to change your mum's prognosis so. Has the cancer spread to a different side of the neck or another part of the body? I would also ask why she had to wait so long for radiotherapy following the neck dissection?

If you dont get the answers you need, pursue a second opinion. But first of all, do try and get your Mum's explicit permission for you and Dawn to be able to discuss her case with the medical professionals.

All the very best,

Cathy

Thanks Cathy. Its so much more comforting talking to people with experience of this as you know how we feel.

Sarah - glad you are looking at website there is some usefull information on here and really nice people. Look at my other posting (titled shock) and you will see a reply from Cookey it happened to her husband to and it was very similar to mums. The shock thing is he only lived a month. This is scary and i think Cathy is right we need a 2nd opnion or talk to the doctor who diagonosed it in the first place and who we havent actualy seen yet. We need answers still, we wont move on otherwise.

thanks again Cathy,

Hello Sarah and Dawn

from Chapter 8 'Invasion and Metastases'of Cancer Medicine, 5th Edition

quote:

Our understanding of the processes of invasion and metastases has improved, but our ability to detect occult metastatic disease or metastatic potential prior to development of occult disease still lags. Some patients with cancer have benefited from improved screening techniques wherein they are being diagnosed earlier, such as in breast cancer. Despite this, approximately 30% or patients still will have clinically detectable metastases at the time of initial diagnosis, and a further 30 to 40% of patients will harbor occult metastases. Continuing with the breast cancer example, the relapse rate in stage I, with less than 1 cm disease, remains 20 to 25%, indicating that the unveiling of metastatic potential is an earlier event than had been thought (Fig. 8.1). Thus, less than one-third of newly diagnosed cancer patients potentially can be cured by local therapeutic modalities alone. The size and age variation in metastases, their dispersed anatomic locations, and their heterogeneous composition over time hinder complete surgical extirpation of disease and can limit the effectiveness of many systemic anticancer drugs.

My understanding is that by the time a cancer is detected, some cancer cells have usually spread to other parts of the body. This does not mean that the cancer has spread and the prognosis is poor as the cells can remain quiet for years and years and be held in check by the body's defenses if they aren't destroyed. They may activate later or not at all. These cells are difficult to detect. It explains why after all the local aggressive treatment that should have killed the cancer cells, they suddenly appear elsewhere! Hence, a prognosis that is good one day can change the next. If these cells activate, the oncologist looks wrong footed! It is all quite complicated. In addition to treatment, one needs good luck too.

Best wishes
Vinod

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

Elusive disseminating cancer cells hold key to metastatic cancer relapse

quote:

The cure for cancer lies in the biology of circulating and disseminating tumor cells that, unfortunately, evade detection and treatment very easily, according to one of the world's leaders in the field. In a plenary lecture, Klaus Pantel, MD, described the properties and clinical relevance of the cells that eventually cause metastatic relapse but remain elusive at primary diagnosis.

In a pooled analysis of nearly 5,000 patients, (disseminated tumor cells) DTC-positive patients had significantly worse survival than DTC-negative patients. Some patients with DTCs, however, survived for years, suggesting that "the biological relevance of DTCs may be heterogeneous," Dr. Pantel said (N Engl J Med 2005;353:793-802).

Thank you for your reply. Every day we learn something new about cancer, there is so much i didnt understand. Can i just ask you stated that the mean that the cancer cells could have started 12 years ago. My mum hasnt smoked for 12 years which is why we couldnt understand how she got this as we have read that its mainly caused by drinking and smoking. She used to be a heavy smoker. Could these cancer cells started then and stayed dormant until now. Apologies to ask but this is what i think and it will really help me to understand how and why.

Thanks

quote:

it will really help me understand how and why.

I don't think anyone really understands the how and why for sure - there are just theories and speculations about relationships between risk factors and cancer occurrence.

Thanks again for your reply, so probably means that her cancer spread maybe sometime ago like you say and wasn't detectable!! I foun it hard to accept what the oncologist doctor told mum (almost 3 weeks ago) but now I'm starting to belive it as it seems like the combination of the cancer, Chemo and redio is taking effect! Unfortunatly she is quite ill with the treatment finding her throat is very sore from radio and she's quite sick from Chemo and on top of all that (because she's already had an op) she can't eat/swallow very well (in fact much worse now) so things not good. She even talks differently now. I just PRAY that she isn't gonna suffer too much because she's still got 3 more weeks of treatment after this week and I'm not sure she's gonna handle it too well! Then what??!! What I have learnt about cancer is that it is evil and in mums case, just awful cos she isn't gonna be her old self ever again, everything bad that could of happened with this illness has been thrown at her, she has terminal cancer, she can't eat or drink normally (only thru a peg), she's really ill from treatment, sore form radio and can't drink to sooth, life is just so unfair and in her case UNLUCKY!! Anyway she's fighting as much as she can and thats all she can do! As for trying to see the Oncologist we've tried on few occasions, she's on leave this week but are hoping to see her on her return. Thats a question I do have Doctor? It seems strange that the oncologist doctor only saw her that day (when she gave her the devasting news) and not since, mums been seen since my macmillon and oncology nurses? It this normal? None of mums family (not even her husband, my step dad) has seen the doctor?? Macmillon and the oncology nurses are amazing and know their stuff granted but i just felt that I wanted to see the doctor, to understand a bit more altho it is becoming more obvious as days go by. I look forward to any comments. Thanks again. Night Dawn!

Hi Sarah

so sorry you have to join this site and sorry to hear about your mum. When my son was diagnosed we met the cancer team, which is what it says. There is a whole team who each play thier own part in diagnosis and treatment. Once treatment began we didn't see the oncologist himself until after treatment had finished. Rest assured that there is a whole team of people who all work together to look after your mum,

Take care of yourself
Love Mum
xxx

Thanks I am starting to understand that now. She has two more chemo treatments left then they will give her break before assessing whether to give her another 6 weeks of Chemo, this scare's me cos so far even tho she has been through hell the cancer IS being slowed down by the chemo and is keep at bay we think (obviously only pallative) BUT she's saying that she's not sure she can do another 6 weeks of Chemo after the break cos she has been so sick, i understand totally cos she wants her last days being happy and able to do things without going in to hospital everyday for radio and chemo but it does scare me cos with squamous cell canncer without treatment just how long will she have?!! Reality is starting to kick in! Anyone have any comments I don't mind if its harsh I'd rather know what I'm looking at. Anyway on a good note she was OK christmas day she did well (she had her chemo christmas eve so didn't feel full affects till christmas night and boxing day and day after that) so at least her christmas day was fairly normal even tho she was very tired she saw her grandchildren (my kids, my sisters kids and my brothers son)all enjoy themselves which is what she wanted! Thanks for your comments so far.

Hello Sarah
I can't believe your Mum's treatment is almost finished! That time seems to have gone by so quickly.
Can I suggest that you stop watching the time? We are in a similar situation to yourself and my husband's treatment is only palliative. We know he isn't going to get better and that all the treatment is doing (hopefully) is giving him more time and maybe more comfort.
Your Mum is the one in the midst of this storm and she is the one that not only has to endure the punishment of the disease and sickness of the treatment, she also has to cope with her own feelings about her situation AND how those around her, her loved ones are coping with her ordeal. Phew! It makes our position look pretty easy doesn't it?
Of course we want every single moment we can get with our loved one however we have to put ourselves to one side and support them in whatever decision they make, and deal with it. We can be worrying ourselves sick because they may be gone in days or weeks or we can be treating each moment as though it is the last we will spend with them, and loving them silly.
There can be so many regrets after someone's passing about words and deeds left unsaid and/or not done. Knowing that it's coming gives everyone the opportunity to build memories, clean slates and make the most of every second. Please don't listen to the clock ticking, live in the moment with your Mum and family.
I'm not suggesting it's easy Sarah, I know it isn't however we can make the remaining time more fulfilling. We'll have a lifetime (how long is that???) for sadness later.
My love to you and your family
Deborah