We Talk Brain Tumours

Katie, so sorry you are here with us.  There seems to be so many newbies and we all have the same questions.  Firstly, my advise would be to invest in home delivery shopping - that way you get wine delivered and no-one sees quite how much!  Wine may not be the complete answer but believe me it seems to help.

Seriously, I would want to know if MIL has a primary or secondary brain tumour.  I hope the hospital has ensured you have a good care package in place for MIL coming home to.  Don't be afraid of creating a fuss, if you think she needs something or if FIL needs help jump up and down until he gets it, I would also say dont wait till you "need" it get it in place early, just in case.  Push for a mac nurse now, they can assist and guide you.

There is no reason why you cant ask for a second opinion but be aware that this could delay any planned treatment, until you know what you are facing it will be hard to know what treatment options are.   

I hope you get the support and help you are looking for, we will try to help you

jms 

Katie, and all other newbies...I'm so sorry that you have all found you need this thread...but we are all here and you will find support. With regards to information, nothing can really be said until you have the biopsy/histology results. If your MIL has primary Brain Cancer then that is what they'll treat. You need to know why they are saying that RT is not an option if it is primary, BUT a lot depends on what type of cancer it is. There are over 129 different types of Brain Cancer..so a real mine field!!! Also a treatments depend on the location of the tumour(s) within the brain...They won't normally debulk if tumour is located near brain stem, as too many major things going on there/large blood vessels etc. The RT does destroy good cells, and the damage can be permanent. Damage to the petuitry gland is common through RT..again depends on location of tumour and area they're blasting. They may feel that, because of her age, that she'll only be able to cope with chemo..as the RT will cause extreme tiredness.

My advice to you would be to always write down questions when you think of them, so that you have them with you. I used to keep a note pad with me at all times, as did my daughter because she always wanted to know everything about her illness.

Also, don't go researching everything on the web....it'll scare you to bits!! and everyone, every tumour is different, causing slightly different side effects etc. If you don't understand what they are saying as them to explain in lay terms...and a consultant worth anything will never be offended if you say you want a second opinion.

If, they have hinted that your MIL has terminal cancer then treatment will be palliative. However, hospice teams will not usually become involved until ALL TREATMENT has ceased..and this is when the MAc nurses take over with regards to syptom/pain management. However, some areas have local hospice at home carers AND THEY WILL come in to assist. It is normally up to the GP to advise them of the situation with regards to support.

Care pakages( Adult Social Services) for the elderly only last for 6 weeks, with nurses coming in to assist, after that they expect you to pay!! Cancer care is different...most hospitals have a MAcmillan Drop in Centre. They have advisors in there that tackle all situations, so give them a visit.....

Sorry if that's been a bombarment.

All of you are on an emotional rollercoaster, that at times seems out of control, and it's painful and scary at times. But often good news is shared, so try to be positive. I know only too well how hard that can be!!!!

Thank you for your kind words. PEABS XXXXX

Hi to all

Katie

I seem to be reading a very familiar story with my mum, a very suden aggressive brain tumour and kidney cancer, her b/t not secondary and a grade 4 without a bi-opsy, as they have told us, we were sent home and baically waited with no information, support or advice, just get on with it!! So I rang around, got in touch with McMillan nurses and spoke/cried etc then got in touch with our local Force group who have been rocks, our GP visited and then we have a district nurse and hospice care involved, just push, push, push and you will get somewhere, we thought mum was just sent home to pass away as we were originally told weeks (10/2/11) maybe a month if lucky, thank god she is still with us, but I felt we were just left with no answers, nothing, the people on here  who offer advice and support are GREAT, and YES buy the wine by the case!!! I DO xx

They then said no treatment, but we are now starting r/t on 29th March so there is some hope along the line maybe, I am mums main carer and my dad gets very frustrated and angry with her as she is nasty to him and gradually getting worse in symptons and he is 67, she is 71 and he is disabled too, my advice is go with the flow with how your mother in-law is daily  and get all the help you can and maybe counselling too, as this has helped my dad tremendously, I could go on and on but think I have said enough pm me if you want.

Mums r/t treatment is 6 session at 10 grays??? each session not sure what grays are?? or have I misunderstood, radiotherapist said the max he has done is 76 over a period of time, but appointment went well and we start on Tuesday 29/3/11 bit scared for mum and us of the outcome but holding it together, any advice on the r/t appreciated sorry if upsetting to talk about this treatment but just have unaswered questions etc . 

LOVE TO ALL AND BIG HUGS

Teen xx

Hi Everyone

Thanks so much for all your kind words and advice - it is really useful to know that I can come on here and off load!  I am so sorry that we are in this situation as it seems so unfair.  My MIL asked the doctor what she had done to upset the man upstairs and she replied to her that actually in her experience only nice people get cancer which I fully agree with.

Anyway, we seem to have been very lucky with the doctors that we have had and the support from Macmillan.  We are waiting for the Community Macmillan nurse to get in touch with us in the next couple of days.  I have also got the contact number for the Day Centre to arrange for her to go there.  

I am very concerned about how my father in law is going to cope.  He says he wants to do it all by himself but I am worried that he is really underestimating how much care she will need.  At the moment she is quite like her normal self but is very talkative without really listening to any responses, is really repetitive and gets very distressed very easily if something falls out of the normal routine.  We were told by the Doctors that she would only be considered a case for radiotherapy if she was well enough and up and about.  My father in law is now very keen to show that she is up and about so she can get the treatment.  My husband is also not coping really well with everything - I think he is grieving for her before she has gone.  

The next big news for us is Thursday.  We will hopefully hear from the Consultant who will know where she needs to go for her next Out Patient appointment - whether Peterborough or Cambridge.  Hopefully we will some more news then.  

Thank you to you all - Teen sounds like we have similar things going on at the moment.  I hope that the r/t goes well.

Katie 

xxxxx

Also forgot to say.  Thanks for the advice about the wine but must confess had already got that one sorted!

Hi Katie, welcome and sorry you find yourself here. I am the 'other side' after my mum recently passed away. My dad was able to care for my mum at home until the end (this was her wish). Like your dad he wanted to do all the caring alone, but eventually realised that it was going to help mum to accept help - and had carers in a few times a day to help with mum's care. Initially mum resented it, but in the end I think she appreciated that they made her more comfortable. 

Someone else already said this (I forget who, sorry) but I think the best motto is 'be prepared' my dad has said now, in hindsight he wish he'd acted sooner (i.e. ordering bed/wheelchair etc) as often things came after he really needed them. I think it was a combination of not wanting to depress mum by bringing things that might bring her down (I'd suggest putting things out of sight until needed) and also that he didn't want to admit just how bad it was getting. 

There is certainly no shame in needing help.

Someone also said (again I forget who, I read the thread before I went to the cinema) but I think once you have a diagnosis you will be better prepared to act/make decisions etc. I very much hope you have the best possible outcome for your mum's scan/biopsy (sorry I forget which, I am making myself sound like a right airhead!) there are people on here coping with all sorts of brain tumours and who can offer you lots of help and support. i couldn't have done this without them, and i wasn't even a carer, just a loving daughter. 

x 

Hi

Hope everyone is well.  Thank you for all the advice you gave its been really useful.

The doctor called today as they had the meeting to discuss her case this morning.  Basically they are unable to determine at the moment whether the brain tumour is primary or secondary.  As she had breast cancer 5 years ago - even though she was given the all clear last year they want to be certain.  They have also confirmed that there is cancer in her bones.  They have asked for a biopsy - my father in law said its not from her brain but I am not so sure - unless they want to take a biopsy from her breast.

We are feeling quite confused at the moment as we don't know really know what this means.  I don't know what the difference in prognosis and treatment is if the tumour is primary or secondary - does anyone know what they do that is different?  

We have now got to wait for an appointment to come through for the biopsy before we can then have an appointment to discuss everything.  Everything seems to be happening at such a slow pace at the minute.

Anyway thanks again

Katiexx

Hi katie

Do you have a mac nurse, or did your mil ever have a specialist breast cancer nurse that you can contact?  She will be able to guide you through the possible treatment options.  Generally (there is always an exception to every rule), brain tumours do not spread FROM the brain  but they can spread from other organs to the brain. I am not sure what you mean by taking a biopsy from the breast, you havent mentioned that there is any tumour there, however if they take a biopsy from the bone they will be able to see if that has come from the breast because of the cells that it will contain.

Hope this is of some help to you

jms

Dear Katie, If cancer has been elsewhere in the body at an earlier stage..people have a 60% chance of developing Brain Cancer later on (even if they have been clear of cancer for yearas)...If you have cancer  you have an increased chance 25%, of developing secondary brain cancer. As JMS said Brain cancer does not normally spread to other areas, However, if the tumour is located in the brain stem this can lead to cancer in the spine/bones. Again, so much depends on WHAT stage and TYPE of Brain Cancer and location. This will determine how they treat; They may not operate to remove tumour from certain areas of brain as IT WILL cause too much damage or death. They tend NOT to operate on Brain Stem of if it;s crossed the mid line in the Hypothalmus area..They try not to operatetoo much in Left Temporal Lobe as this can effect the speech...So much depends on location and stage/WHO grading.

Take care PEABS XXXX

Hi-- as she cannot have conventional treatment, we are putting our daughter on this alternative cancer treatment - see it on www.bugwigcenter.com -- we have 2 friends who have reduced their cancers on this diet so it's worth a try XX