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It's back but did it ever really go?

Posts: 3
Joined: Mar 2012

Hi folks I only posted here once and live in the UK. I guess when I posted I knew something was not quite right. Well my world has fallen apart!

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

Anonymous user (not verified)

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Posts: 71
Joined: Feb 2012

what you are describing is horribly frightening. Radiation to the brain can produce terrible effects. I would be horribly uncertain. right now we are on the horns of a dilemma just like it. My husband is getting secondary chemo (the first didn't work any more so they are trying another one that doesn't work either)
the choice is; chemo that hardly works or NOTHING. so you choose the chemo (in your case, radiation) that will make you sick because there's still a small hopeit will help a little.
miserable choices, all of them.

Posts: 191
Joined: Nov 2011

I don't have any experience to offer here, but wanted to send you hugs and best wishes. From what I have read, it is indeed possible for small cancer cells to not show up on the PET scan. So it may be that this was the case, or it may be that it is a recurrence. But, as William says, it is really a moot point now. You can only focus on what is happening now and make your decisions based on that. They are difficult and individual decisions to make. I have been on these boards just short time and have seen people make the decision to fight on whatever it takes, and others decide to not pursue further treatment and enjoy their remaining time as best they can. Such a personal choice. I don't honestly know what I would do.

I am so glad you got to enjoy a wonderful trip with Neil in the middle of all this. Hugs and best wishes to you both.
(wife of Bill, diagnosed 11/8/2012 T3N2Mx, chemo/rads/no surgery as other health issues made surgery too risky)

Posts: 8
Joined: Mar 2012

Sue, I am so sorry to hear your story. My father is turning 72 tomorrow, and was diagnosed with stage 4 ec last June. He had mets to the liver and some lymph nodes, and was put on a chemo regimen to which he responded wonderfully. In October, there was no evidence of the mets in the liver or nodes, and the primary tumor in the esophagus was smaller. They switched his chemo to Xeloda at that point thinking it was what was causing neuropathy in his arms and legs, but at the very end of November, when my father got very weak very quickly, and was falling down, he went into the hospital to discover he had 2 tumors in his brain. One on the top left, one on the bottom right side of the brain. They removed both surgically the very next morning, in one surgical procedure. He spent a week in the hospital, and then 2 weeks at a rehab facility where he had to re-learn how to walk, hold a pen, brush his teeth, everything. By the end of that time, he walked back into his house and was able to spend Christmas at home. We did simple things like move his bedroom to the first floor, and stayed with him for 2 weeks to help with housekeeping, food prep, etc. From then until just this past Saturday, he was back to living alone and having a great quality of life. He went to physical therapy for a few weeks, once a week, and by February, flew down to Florida to stay with my brother. He swam, played golf, went out to dinner, etc. He was back on the Xeloda/ herceptin regimen. In March, a scan showed no increased activity from the tumor or liver or nodes, but some more activity in the brain. They suggested WBRT, to which he agreed, but put it off for a month so that he could go to Florida for a family trip to Disney World, as he was having no symptoms. He was at Disney for 4 days, where he probably walked the equivalent of 6-8 miles a day. He ate big meals, went on rides with the grandkids, and had a great time. He flew home on a Saturday, began the radiation treatment that Monday. It has knocked him down pretty fast. After 3 weeks, 15 treatments, he needed to be admitted to the hospital with pneumonia. He has completely lost his appetite. They have continued with the radiation treatment, as this week was to target the specific areas where the tumors are larger, and as of today, he looks a lot better than he did 4 days ago. They are giving him antibiotics, and keeping on top of his nutrition. But we do not know when he will be coming home. I know how hard it is to read all these stories, but I just wanted to tell you what we have gone through here, to help as you decide what the best path for you might be. I do agree with the other posters that you need to be persistant with doctors, and trust your instincts. The squeaky wheel gets the grease, so to speak, when doctors and nurses are busy. Good luck to you. I am sure we will all be praying for you.

Ginny_B's picture
Posts: 543
Joined: Sep 2011

Hi Sue, my SIL had metastatic brain cancer from breast cancer and underwent Whole Brain Radiation (WBR). The side affects sound terrible, but she didn't experience any of those other than neuropathy to her feet. There were 9 lesions in the brain. Now, several months later she has only 1 and it is shrinking and shrinking.

The Gamma Knife was not an option for her given the location of the tumors. (Eyesight and hearing might have been negatively impacted.) She underwent a series of 10 WBR treatments.

Don't give up. Keep fighting.

ABC321's picture
Posts: 52
Joined: Oct 2011

Hi Sue,
We don’t have any experience with brain mets, but I just wanted to share with you some of our story. My partner James was diagnosed with stage 4 EC 9 months ago. A met to the liver, and some angry nodes of course. We were offered a ‘palliative’ approach. Limited radiation. Chemo. No surgery. James argued for the curative approach (thanks!), so received the full course of radiation and Chemo. The specialist told us she had to argue the case, because it wasn’t something they would normally do. They also performed a laparoscopy and excised the liver lesion at the same time. (we specifically told them not to biopsy, so excise was fine). Fast forward and James recently convinced a different surgeon (from a different hospital) to remove two new liver lesions. They also biopsied the original EC site. The EC site is clear (thanks for the curative radiation), and the liver lesions are not EC but neuroendocrine carcinoma. What does it all mean?? It’s still not great, but the original diagnosis…palliative care…is now in question, because the EC may not have spread as we were originally informed. I can’t tell you how amazed I am that you can go from ‘palliative’ to potentially ‘curative’ simply because you pushed the system to check, recheck, and not to settle for the ‘run of the mill’ treatment. We had the results of the CT scan yesterday and still looking all clear….they are now talking about another multidisciplinary meeting to discuss James’ case, with the potential for further ‘curative’ surgery. Like you we have three young children, which is more than enough motivation to keep going, keep trying as you well know. Who knows where we will end up on this journey, but I have learnt that you are your own best case manager…..and all the advice about getting further opinions….absolutely priceless!
Steve & family

Posts: 2
Joined: May 2012

Hi Sue
Wanted to just say, am thinking of you and hold you in my prayers. I too live in UK and my husband John has EC adenocarcinoma t3 n1. We are both are in our 30s with a young family. I think you need to be getting a second opinion from a consultant in neuro as what we have found is we saw an oncologist re the chemo and since surgery have been reviewed by a GI consultant. What frustrates me here is that cost seems to rule some of the decisions made, they haven't rescanned John since his surgery citing the risk of radiation exposure as a justification! I hope that since your post the radiotherapy has been responsive
God bless Sarah

Posts: 2
Joined: May 2012

Hi Sue
Wanted to just say, am thinking of you and hold you in my prayers. I too live in UK and my husband John has EC adenocarcinoma t3 n1. We are both are in our 30s with a young family. I think you need to be getting a second opinion from a consultant in neuro as what we have found is we saw an oncologist re the chemo and since surgery have been reviewed by a GI consultant. What frustrates me here is that cost seems to rule some of the decisions made, they haven't rescanned John since his surgery citing the risk of radiation exposure as a justification! I hope that since your post the radiotherapy has been responsive
God bless Sarah

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