Hi Purple,

Here's hoping that your PET scan and endoscopy will give you the answers you're waiting for, so fingers crossed that you don't have long to wait for them.

Kind regards,

Jolamine xx

Thank you Jolamine. I think it is instead of SLNB. I feel angry that I was set to start chemotherapy and now everything has changed. I am already preparing myself for a stage 4 or terminal diagnosis,  I simply cannot help how I feel.

Best wishes xx

Just read the thread, you must be beside yourself! It takes a lot of gearing up to prepare mentally for treatment, my biggest worry is that things that I have been preparing for get cancelled or changed at the last minute. I hope and pray that there is a good way forward for you on your next appointment, it's really hard to stop our minds wandering off to those dark places....let us know what happens at your next appointment? Xxxx

Thank you Marlyn. Trying not to worry too much.  I will know more on Tuesday and will keep you informed xx

Hello Jolamine,

I hope you do not mind me providing you with an update. i saw my consultant yesterday. CT and bone scan results have shown two things::-    

1. A tiny 2mm spot on left lung. Consultant said it is miniscule but needs PET

2. A very slight thickening of small part of vertebrae. She said this could be a previous injury. PET will confirm what this is,

My consultant also advised, part of my biopsy results are hormone negative. They are awaiting HER status. I hope I have explained this correctly. 

I am not approaching this news with negativity. My consultant said they are very throrough and both herself and oncologist would like PET to  clarify what the above to findings are and of course enable them to come up with a precise treatment plan.

She said everything is very treatable and I can get through this either way.

PET is this coming Monday, with results on Thursday.

Thank you for your support and advice, Jolamine. Results waiting is absolutely the worst part of this journey. 

Best wishes xx

Hi Purple,

Thank you for your update.

Not the best news, but not the worst either. At least your lesions are small and are very treatable.

It sounds as if your consultant is being very thorough. A PET scan should clarify things a little more. You need to know exactly what you are dealing with, so that your consultant and her team can come up with the best possible treatment for you.

I am glad to hear that you don't have too long to wait for it. Most of us would agree with you that waiting for results is always scary. Try to distract yourself from the wait by keeping as busy as you can and, don't consult Dr Google. Many of his sites are out of date, or poorly researched and, will terrify you for no good reason.

Try to hang on to your positivity. It is the most useful tool you have for getting through this.

I shall be thinking of you on Monday and again on Thursday and, hope that it is good news.

Please let us know how you get on.

Kind regards,

Jolamine xx

Thank you Jolamine.  Your words are very comforting indeed.  I am extremely grateful.

As you say, it's not the worst news. My consultant said, despite needing PET,  "this is very treatable and you are not in dire straits!". She said both herself and the Oncologist are always thorough. 

I am trying to keep busy. Keep some normality.

My biggest fear is the PET will show more BAD news, by this I mean multiple cancers. I realise this may sound silly but it's how I feel.

Will let you know the outcome xx

Hi Purple,

No you don't sound silly at all. We all tend to think the worst case scenario when waiting for tests and, the more tests we have, the more we worry.

It will be worth the wait in the long run though. Getting the right diagnosis is key to getting the right treatment, so you'll just have to be patient for a little longer.

I sincerely hope that you get much better news than you are expecting from your scan.

Kind regards,

Jolamine xx

Hi Jolamine ,

I wanted to update you. You have been extremely kind, following my journey so far.

My PET scan did not go ahead today,  because the scanner isn't working.  I am now rescheduled for Thursday, however I have been advised there is no guarantee the machine will be fixed.

I am in complete limbo.  

I am now extremely anxious.  Worst case scenario, that it does not go ahead on Thursday,  how much longer can they actually  keep me waiting until I can start treatment.   

I was diagnosed on 11 December. Since then I have had a number of delays due to different factors. 

I am wondering if you can suggest any questions that I could address with my nurse OR MDT, that may give me some firmer answers as to when they anticipate my treatment starting.

My chemo was due to start 10 Jan, but postponed,  due to the findings on CT and Bone Scans.

The longer this plays out without a definite treatment plan in place, is making me question everything. 

Best wishes

Xx

Oh Purple,

You've not been the luckiest with appointments, have you? Did they contact you before you got to the hospital today, or did you only find out once you got there?

I would imagine that they will be anxious to get the PET scan repaired as soon as possible, so let's hope that it is something simple and that they don't have to wait for a spare part. If it is not fixed by Thursday, it might be worth asking if any other hospitals in the area might be able to do the scan for you?

It might also be worth asking what effect this delay/break in chemo is likely to have for you, especially if  you are going to have any further delays.

When are they planning to restart chemo and, do thery expect you to become neutropoenic again?

Are they likely to have to change treatment following the findings of your CT and bone scans?

I think that these are possibly the main questions that you need answers for. You sometimes need to ask direct questions to get a direct answer, so don't be afraid to ask your questions in this way.

I really hope that you get your PET scan on Thursday.

Kind regards,

Jolamine xx