It's back but did it ever go?

I wrote that since returning from your wonderful country on the 2nd of May I had been having symptoms which were consistent with a brain tumor. On Tuesday evening the headache I had endured since flying out to Florida on 19th April came on with a vengeance! I landed up in hospital in the emergency room! After investigations they found two brain tumors. Before my partner Neil mentioned I had a history of EC cancer there response was positive as soon as those words were uttered I felt I had been abandoned by them. They started me on a high dose of steroids which worked instantly to reduce the swelling and pressure. By morning I thought I must have been dreaming and felt like wonder woman so much so I nearly tied my dressing gown into a cape! I was left on the ward from Thursday to Friday with no further medical information. However whilst there I did have a abdominal CT scan which showed NED. I was further booked into have a MRI scan the following morning. When I arrived for my MRI scan I was informed that they couldn't do a full scan as I was not allowed to have "contrast" two days running! I was relived to be honest as it had taken 7 attempts to canulate me and the pain when the contrast was injected was unbearable.

I was in hospital on a ward used to treat Neurological patients from Wednesday to Saturday tea time the issues I had with my dietary and eating regime where so bad they managed to assist in me losing 9 lbs which I could not afford to lose. They had not got a clue about gastric operations and were on occasion quite rude to me. Informing me I needed to eat sugary foods to combat my low blood sugar even though I'm sugar intolerant! Anyway that's another story, I spent the last morning in hospital writing a personalized care plan laying out my special dietary/nutritional needs which I intend to print of and laminate for future use,as I think over the next few months I shall be in and out of hospital quite a few times. (if any of u arebinterested

today I met with my EC oncologist whom interestingly enough the Neurological team at our small hospital had never heard of! He confirmed to me that he thought I had secondary cancer of the brain. When asked how was this possible given that in December I had been given the fantastic news that my tumor was T2N0M0 and didn't even require adjacent Chemo/radiation. He replied that he thought that the spread may have been there prior to my ivor Lewis and they missed it as PET scan wouldn't pick up tiny cells. Needless to say this is not what I wanted to hear.

He laid out the following treatment paths open to me!

Option 1. Do nothing carry on taking the steroids and deal with symptoms as they emerge I guess he means the tumors growing or multiplying. (prognosis with this option is 3 months)

Option 2. Have the standard treatment of full head radio therapy which may not work same outcome as option 1 but side affects

Option 3. Standard treatment of full head radio therapy which could shrink the tumors n give me a prognosis of 7 months plus side affects.

I asked about the surgery he said if there was one he would tell them to cut it out, but with two (one being in place which made it inoperable) he said it wasn't worth it plus the fact that there could be minute cells which had not formed yet. And the risks of brain damage.

I asked about the gammer ray or Cyber knife which is being trailed in out country and in fact we only have one hospital which does this in London and you have to pay privately for it! He said he couldn't guarantee it would work and similar risks attached with spread as surgery option.

I asked about Avalastin excuse spelling he said it was also a drug that had to be brought privately and didn't know of it's benefits.

I felt overwhelmed as you can imagine and at first asked if I could come back to which he looked horrified . When asked if it was his relative he was advising what would he be saying his response was" have the standard treatment u have nothing to lose" I felt pressured into opting for this treatment and signed the consent forms. I go tomorrow to have my mask fitted ready to start radiotherapy Thursday.

Now 8 hours later I'm uncertain I feel I want a second opinion but like my profile says this is not the norm here in the UK although if I do ask it will be honored.

My questions to you are thus!

Has anyone experience of secondary brain cancer?

Does what I have told you all make sense and would u be feeling uncertain?

How realistic are the prognosis timescales do they tend to give you the minimum and hope u exceed it? I'm fit and healthy had returned to work etc I was in Seaworld with my 3 year old two weeks ago planning my next visit!

Am I right to feel not confident with my doctor as he isn't neurological specialized?

We don't know much about the latest brain cancer treatments here any input or points would be helpful.

Thanks for reading this

Ever hopeful but realistic

Sue

3 Replies

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  • Can't answer questions, but just want you to know we are thinking of you and offer our support and the strength that comes from from whatever faith you have.

    Life is life so don't give up, you don't know what is round the corner. You have heard the worst I think so hang on in. Every one is different and at this stage nothing is certain. Wish we could say more, but you are in our thoughts and prayers. Phil & Pat

  • Dear Sue,

    I can only echo the above sentiments and send you a very large hug. What a dreadful shock for you and your family! When my husband had cancer we had private medical insurance which covered him for a drug similar to Avastin and helped prolong his life by over a year. If you want to get Avastin then you might be able to apply to the hospitals PCT (if they still exist) and make a case for treatment. In my area I believe its covered on the NHS. Also are there any trials going on you might be able to get onto? It all depends how you feel about the prognosis and how much you can take on board at such a time. My very best wishes Sue.

    love

    Charliexx((( )))

  • There are a good number of people who have had oesophageal cancer, and then later had another sort of cancer, and been successfully treated for both.

    So the fact that you have developed the second lot does not necessarily mean that it came from the first lot of cancer, if you see what I mean. The doctor will be able to tell you, and it sounds as if he has speculated that it has developed in parallel.

    Absorption of medication and nutrition by mouth may well be very different for you than for other patients, so that has to be calculated carefully. Your digestion system will be shorter.

    A second opinion is a standard entitlement - the only thing I suggest is that you consult your doctor/surgeon and ask for the name of an authority that they respect for that second opinion.

    It is a traumatic thing to face and our kindest thoughts and sympathies are with you and your family

    Alan