Any new from Pathology J?

I had some bad news Monday, my CT results showed that one of my tumours has grown significantly since the last scan.

My oncologist said it was odd but not unheard of that only 1 had grown whilst the rest continued to shrink.

I start a different chemo drug tomorrow in the hope that will shrink it. My kidneys are fine which is one good thing. 

Hi Upthewall.

I'm really sorry to hear about your news. Hope the new chemo is not too tough on you. Please keep me updated on how you're doing.

I got the pathology back and it was benign. I presumed the other 'stress' related symptoms would disappear... but they haven't. The doc sent me for an ultrasound due to the raised Alkaline Phasphatase, dark urine and night sweats. The results came back normal.

I'm absolutely terrified about the tinnitus in one ear and blurry vision. It can't all be coincidence that all this started around the same time. Do you think I'm being paranoid? I just don't feel well at all, I've now got high blood pressure and constant tachycardia too, I get knackered from just walking around. In May of this year I was running 10k every week and boxing at amateur level.

My theory is that the colonoscopy missed something and it has already spread to my liver and brain. I know this sounds bonkers but I'm just not right. No doctors seemed concerned about any of my symptoms. I've had to take it into my own hands and I've payed to see a private gp who has referred me for a brain mri due to the unilateral tinnitus and visual disturbances but the hospital will only do it without contrast and I don't think this will ease my mind.

I'm so sorry to post this on a forum where people have genuine diagnosis but I feel so lost. 

Any suggestions would be welcomed.  J

Hey J,

sorry to hear that you're still feeling so unwell, I hope you get some answer soon. I think you've done the right thing seeing someone else, it's horrible when you feel like somethings really wrong and no one will listen.

I'm not sure if I've mentioned this before but I used to be a runner, 10 months before diagnosis I ran the Amsterdam marathon. One of the reasons I knew something was up was because my race times went right down and I struggled terribly. I even had to quit the local park run one day and I had never quit a race in my life.  

I've actually been really good since the new chemotherapy, my dry skin and rashes from the immunotherapy have cleared up, I'm full of energy and I've actually been going to the gym, I hadn't stepped foot in the place for over a year till now. I won't have a scan for roughly 6 weeks but surely feeling like this is a good sign. 

Do you have a date for the mri yet? 

MRI is on Thursday at 2. 

Do you think I should do a FOBT test? If there's hidden blood in my stools will this make doctors react?

How have you been getting on lately? 

J

I mean apart from all the working out! I might try going for a run but I'm worried about my heart! 

J

Sorry I did edit my post above cause I realised I hadn't said how I was getting on but you must have replied before I edited...

"I've actually been really good since the new chemotherapy, my dry skin and rashes from the immunotherapy have cleared up, I'm full of energy and I've actually been going to the gym, I hadn't stepped foot in the place for over a year till now. I won't have a scan for roughly 6 weeks but surely that means it good"

It can't hurt to get your stools tested, my husband actually ordered one online from a company because his Dr wouldn't listen to him, his came back negative. However I believe his was stress, he was having stomach pains and bowel problems and since I've been feeling better he's forgotten all about it. I don't know if that will get the to react though.

Have they ever bothered to ultrasounded your liver? 

Hi, yeah I had an ultrasound of my liver. The guy who did it said I had possibly an enlarged liver or something called a Riedel's lobe. Which is a variation of a normal liver with an extended lobe. He also said the liver looked slightly coarse but when he sent the report back to my doctors he said it was normal.

Which one of your enzymes was raised can you remember?  

I'm so glad you are feeling good and going to the gym.

You are an inspiration. 

Hey J,

Sorry it's been chemo week so It's taken a while to reply. I don't recall which enzymes were raised I'm afraid. I think if they've scanned your liver and not seen any growths then that's really good. They can see a lot in those scans and that's where they picked up mine.

I get all my scans forwarded to an oncologist in London to give me a second opinion and yesterday I received a call that after assessing my latest scan in a meeting with his surgical team he wants me to go for an MRI this weekend to take a closer look at my liver and then go see him on the 13th. I could be totally jumping the gun but I'm hoping they think they can do something finally, maybe cut out the biggest tumour. Who knows? But I'm taking it as something positive. I'll keep you updated, it's gonna be a long wait that's for sure.

Hello J,

How have you been? Anymore news? 

I'm sorry it's taken so long to come back to you, it's been a very long waiting game.

I went to see my London Dr and he confirmed that they thought there was a chance to operate but he was waiting for his surgeon to confirm, he told me to give him a week and if I'd not heard anything chase him up.

Then last Wednesday I went for chemo and they refused to give me it, they said my latest CT had shown my tumour was still growing. They sent me home saying they'd be in touch.

I continued to chase up the London Dr and Saturday a meeting with a surgeon came through the post for today.

I’ve seen the surgeon today and he’s gonna cut that tumour out. He said the other tumours have calcified and it appears that they are now non cancerous. 
He said he can’t promise a cure but hopes to give me atleast 15 - 20 years!!! Considering last summer I was given 18 months to 2 years it's a miracle!!

The surgery is intensive and comes with risks but what have I got to lose? We are all over the moon. If all goes to plan surgery could be mid January.