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Are all stage 4 cancer diagnosis cases terminal?

30 Sep 2013 13:17

my mum has been diagnosed with stage 4b base of tongue cancer.

she has completed a range of treaments and is now trying to recover. the consultant and specialist nurse have said that the objective of the treatment is to cure her.  what i don't understand is how can stage 4 cancer be cured when in it's definition that means the cancer is terminal?

i just want a realistic prognosis as i tend to want to know as much as possible to be able to prepare as best as i can, my mum doesn't want to know the detail, she just keeps asking for confirmationa nd reassurance that the cancer will be cured. we are positive and only have discussions that focus on what we will do when she's feelling better

my dad died at the end of last year (lung cancer) less than 6 months later my mum was diagnosed with cancer (my mum and I both cared for him at home), my sister in law died young of brain cancer just months before my dad died. No one knows what's round the corner and i totally understand the importance of being strong and positive.. but sometimes i feel like I am going bonkers thinking about the posibilities in relation to my mum.

I have tried to talk to the consultant and specialist nurse but both sort of make me feel like i am being negative but just mentioning prognosis.

it all sometimes feels like a bit of a nightmare that i actually can't believe is happening, i miss my dad like mad and often feel very upset about his struggle in the last few weeks... i can see elements of my mum's health that remind me of what happened with my dad

sorry to be negative folks x

Re: Are all stage 4 cancer diagnosis cases terminal?

30 Sep 2013 15:27 in response to CJS

Hi CJS,

Im sorry to see that you have recently lost your Dad/sister-in-law and your Mum is now battling cancer.  In answer to your question, it is very difficult to say.  If a cancer is Stage 4, this means it has spread away from the original tumour site either locally in the surrounding tissues or to other organs.  I don't have much knowledge on tongue cancer, but I have read of people who have cancer that is stage 4 and have been "cured" - for example people with bowel cancer with spread to liver, who have had a liver resection and appear to be cured.  The word "cure" is a difficult one to use with cancer, as the disease itself can be very unpredictable.  The statistic that seems to be used most often is that if someone has cancer, has all the appropriate treatment and no cancer shows up for 5 years, then that person can be as good as cured.  However, sometimes cancer can show up again years later and no-one knows why, but the likelihood after 5 years is very small (the same odds as the general population have of getting cancer).

Stage 4 doesn't necessarily mean terminal.  If the cancer can be removed with successful margins then a cure could be likely.  Also if it can't be completely removed, some people can live with a Stage 4 diagnosis for many years with different treatments. 

Sorry for rambling on I hope it has made sense.  All I can say is try and focus on the present.  It's fantastic that your Mum has finished with all her treatments. Help her on her journey to recovery and then just try and enjoy each day with her - easier to say than do I know.  Hopefully the treatment she has had will mean she is cured.xxx

Re: Are all stage 4 cancer diagnosis cases terminal?

30 Sep 2013 19:19 in response to CJS

Hello CJS,

We have some information about Grade and stage of mouth cancers on our Cancer Help website which I have linked for you and may be of some help.

It can be a little confusing sometimes understanding all the staging and medical jargon that is used so I will ask one of our Nurses to pop in and reply to your post as well. However if you would like to give them a call they are available Monday to Friday 9am to 5pm on 0808 800 4040 which is free to call from a UK landline and most mobile networks.

best wishes,

Jenn

Cancer Chat moderator

Re: Are all stage 4 cancer diagnosis cases terminal?

30 Sep 2013 20:30 in response to CJS

Hi CJS, Have sent you a reply on my thread (Mum reunited with Dad) as you messaged me on there.  Just want to reiterate how sorry I am that you are going through this.  My heart goes out to you and I totally relate to the fact that you are grieving for your Dad and seeing elements of your Mum's health that remind you of your Dad.  As you know I lost my Dad then my Mum 5 months later and I felt exactly the same. My Mum didn't know her proper diagnosis, she didn't want to and it was so hard to try and keep it from her and act like everything was OK.  Don't be hard on yourself, you don't have to be strong all the time, allow yourself to cry, shout, be angry whatever you feel let it out, it's not good to keep it in.  Take care and keep posting when you need to, it helps.  Hope x

Re: Are all stage 4 cancer diagnosis cases terminal?

30 Sep 2013 20:45 in response to CJS

hello - sorry to read your thread, you have all been through such a difficult time. I don't know the answer I'm afraid, it's all just so confusing to me. I know what you are going through, lost my mum 3 years ago and less then 6 months after my dad and uncle diagnosed (a day apart) - dad is the only one left and we dread each apointment now knowing what it will bring.  Thoughts with you and wishing you so much luck..

Re: Are all stage 4 cancer diagnosis cases terminal?

3 Oct 2013 14:23 in response to CJS

Hello CJS,

I am one of the enquiry nurses and Jenn our moderator asked us if we could help. I am sorry to hear about your mum and can understand this is a difficult time for you both.

You asked about stage 4 cancers and if they can be cured. The staging system is different for each type of cancer and has been developed over time. Cancers are staged form 1 to 4, with 1 being early and 4 being advanced. The stage reflects the likely outlook and helps doctors to decide about treatment because research studies look at treatments by cancer stage. Within each stage number, and depending on the cancer, letters have been introduced to the staging system to subdivide patients again into different categories. These further reflect the outlook and help to tailor treatment.

In quite a few cancers, stage 4 means the cancer has spread (metastasised) to another part of the body to form secondary cancers (metastases). As a general rule cancers that have spread are difficult to treat and are unlikely to be cured in the long term, although treatment can help to shrink or control them. Occasionally a cancer that has spread can be cured, but this would depend on the circumstances. An example might be if there was a single secondary cancer that could be removed or destroyed and if no other secondary cancers ever develop in the future.

A stage 4b base of tongue cancer means it is very advanced locally and has spread to lymph nodes, but as far as can be told, it hasn¿t spread to a distant part of the body.  So there is the chance that treatment may be effective at destroying the cancer where it still is. But unfortunately treatment won¿t always work.  You say your mum¿s doctors have said that they have given her treatment with the aim of curing her and they may have. But they can¿t guarantee the outcome so it is a question of  waiting to see if the cancer comes back to know if the treatment has been a success.  For most people, this sort of uncertainly is unsettling and hard to live with, but people say it gets a little easier as time goes on. I don¿t know how likely it is that your mum will be cured. If you want to know, you could ask her specialist if they can give a roundabout idea or you could leave it and think in terms that a cure is on the table so to speak and hope for the best. Not so easy I know.

You mentioned trying to stay strong and positive. This is quite a tall order given everything that has happened and I think it is only natural to be having some down days when you feel upset and worried.

I expect at the moment your mum is still recovering from treatment and this may take some time. Sometimes after treatment for tongue cancer people have ongoing problems. So there is a lot to be coping with and it is really hard to support someone you love and see them going through this.  The community here on CancerChat will want to help so do keep on posting. And if you want to get in touch with us in the nurse team please do. We have an enquiry form at this link and you can call us on 0808 800 4040. We are around 9am to 5pm on weekdays.

Best wishes,

Julia

Re: Are all stage 4 cancer diagnosis cases terminal?

4 Oct 2013 11:15 in response to CJS

Hi Cjs,

I was diagnosed with grade 4 lung cancer Tumor in Oct 2012, this led to blocking of the airway to my right lung which collapsed.

After having treatment at Wythenshaw and the Christie hospitals in Manchester, then Chemotherapy and Radiotherapy treatments.

I did had some difficulty while having the chemo, but overcome this with possitive thoughts. I finished my treatment plan in April 2013, then during consultation with my specialist he informed me

my Tumor had gone. This was the best news i could have hoped for. I am now waiting for my 6 month checkup 15th Oct to see if anything has grown back.

My healing process is ongoing but getting better every day. The point i want to make here is each individual case is different.

I hope this may help someone in the future.

Re: Are all stage 4 cancer diagnosis cases terminal?

4 Oct 2013 17:05 in response to CJS

Hi CJS,

So sorry to hear of the sad news you and your family have endured in such a short space of time. Life can be cruel.

I was diagnosed with stage 4 tongue cancer recently and I've just had surgery to remove the tumour and my lymph nodes. As far as my surgeon can tell I'm cancer free but I will be having chemo and radiotherapy next month to give extra reassurance that if any cancer cells have been left behind, they will now be zapped away. My surgeon and consultant are confident of curing this for me.

So I hope that gives you some reassurance. I'm guessing the stage four diagnosis for your mum was due to it travelling to the lymph nodes? As this is very common with head and neck cancers, but doesn't always mean it can't be cured even if it has spread to there. Ask your mums medical team for a clearer explanation of the staging and how they came to the stage four diagnosis. I have chatted to a few people on here now that say they have had a positive outcome form tongue/base of tone/tonsil cancer. I hope this is the case for your mum too.

Nicola

Are all stage 4 cancer diagnosis cases terminal?

18 May 2015 23:12 in response to Nicola2209

 

Dear Nicola how are you now? And CJS I hope your mother is well now?  I reconnected with my father just recently and discovered he had been treated for stage 4 cancer at the base of his tongue, his team say they expect a full recovery? I hope that you're  are able to reply an as I am worried 

 

 

 

Are all stage 4 cancer diagnosis cases terminal?

19 May 2015 11:42 in response to CJS

I guess what they are saying to you when they say cure is the likelyhood of making it to 5 years post diagnosis. If you ask your oncologist to speak frankly they will give you some statistics, they are reluctant to give you a time span because it varies so much person to person and for many people it can destroy their hope. Hope is very important when you have cancer. Without hope you can give up and shorten your life. I needed to know for practical reasons of looking after my family when I've gone. I am told that my type of cancer at stage 4b same stage as your mum has a 25% chance of being alive in 5 years time. I could live 10 years or die next year. I could also choke on a sausage skin or get run over and die tomorrow, to put it in perspective. If you really want to know, the information is here on this website. I am so sorry to hear that you've lost both your dad and sister to this awful disease, wishing you and your mum the best possible outcome.
 

Are all stage 4 cancer diagnosis cases terminal?

3 Aug 2015 06:35 in response to CJS

I can so identify with what you are saying - my husband was diagnosed with stage 4 lung cancer about 6 weeks ago and when the consultant told us he just said that it was terminal and all he could offer was chemo to give us more time.  My husband had the first cycle but then had a build up of fluid in his lung that required hospitalisation for a week - he has now just had his second dose and is suffering the normal side effects but keeps on about the fact that he is half way through the treatment and planning things for when the treatment is over and he is well again!  From all I have been told this is unlikely but, for instance, he wont even consider cancelling holidays we have booked - even though one is to America next March.  I feel like I am going mad and I feel guilty somehow because I am thinking it is terminal and he is so positive.  I cannot imagine how awful it is for you with what you have been through over recent times - all I can say is you are not alone.  My best wishes.

Are all stage 4 cancer diagnosis cases terminal?

3 Aug 2015 11:06 in response to cassy

Hi Cassy,
Great that your hubby is so positive, good on that man!!!!   So truly wonderful how he is planning for next March.
Sometimes you just need to follow the lead of the person with this dreadful illness. In all honesty whatever gives our nearest and dearest happiness/ peace of mind/ contentment let it be.
I know where you are honey, been there, so as you have so kindly mentioned to Kimchosen, you too are not alone.
Big hugs
Kathy x

Are all stage 4 cancer diagnosis cases terminal?

3 Aug 2015 12:21 in response to CJS

I've not much to add & this may be of no help but taking your title literally, Are all stage 4 diagnoses terminal?, you may be interested to know that I survived stage 4 Non-Hodgkin's Lymphoma I had 14 years ago.  I found out recently that 14 years ago I was give a 20% chance of surviving for 2 years. I think, as has been explained, the stage refers to the spread, & stage 4 doesn't necessarily mean that it's terminal. I was expected to die & had only palliative treatment but was completely cured. Your mother is being treated with the objective of a cure, which I think ought to be encouraging .Probably the staff involved expect that to be regarded as good news.  I hope her treatment is a complete success.

Are all stage 4 cancer diagnosis cases terminal?

18 Dec 2015 22:53 in response to KathyS

Hi I was wondering whether somebody can help me... My dad has been diagnosed with stage 4 non small cell lung cancer which has apparently gone into his lymph node near the chest. He also has a cancer which has spread to his pelvis. He has shown no symptoms other than slight weakness in his leg. He's had no cough no nothing to show he has lung cancer. The doctors tell us he as 12 months to 24 months to live. I won't accept this as he is still positive and believes that there's nothing wrong with him. They have offered us palliative care however we have been doing better some home natural remedies too. Is it possible these doctors can get it wrong as I read that people have beaten this at stage 4.  Our family has been torn apart and we are all losing our minds. We love him so much and to lose him would leave such a dark big hole in all our lives. 

Are all stage 4 cancer diagnosis cases terminal?

19 Dec 2015 08:29 in response to eileena26

I am sorry to hear of what your dad and family are going through.  Why not get a second opinion? I believe you are entitled to on the NHS - your GP will advise you.

You can obviously pay privately for another consultation.  I met a lady a few months ago whilst I was having chemo.  She told me that her NHS consultant told her back in 2009 that there was no more he could do for her lung cancer and gave her a prognosis of months. She sought another opinion (privately in her case) and is still going strong with treatment.  Always stay hopeful - it's what keeps us going.. x