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Waiting, waiting & more waiting

12 Oct 2017 11:52

Hi all,

i finally have built up the courage to write my own post.

i have been complaining of a lump feeling in my throat since June this year, nothing can be felt externally but within my throat it feels like I constantly have something stuck.

i finally was referred for an ultrasound on 17-Sep where enlarged lymph nodes were found, on 19-Sep I had a core needle biopsy of one of these lymph nodes. I have been told these results can take 3-6 weeks.

in the mean time I have an ultra sound of my neck/chest/stomach/pelvis, which has shown a further 2 areas of concern. An enlarged thymus gland & an enlarged lymph node in my right lung along with inflammation.

last Friday I had a Pet scan, which I am told results could take 7-10 days.

My anxiety is through the roof, I can't work & I am struggling to function as normal. I am a mum to 4 young children, and although I am keeping strong for them.

I have been told it could be a number of things, but the 2 cancers would be lymphoma or thymoma. Has anyone had an experience of this- has anyone had similar symptoms I have had with these cancers. 

I must also comment I have had no 'typical' symptoms- no night sweats/weight loss/ fatigue/ itching. 

Thank you for taking the time to read this. 

Re: Waiting, waiting & more waiting

12 Oct 2017 13:08 in response to JEM0768

Hi I understand your worries and anxious thoughts.my situation is not same yours .but I was diagnosed 7 weeks ago with bowel and liver cancer and with all scans etc take so long for results .I don't sleep very well .have not started treatment .but have appointment tomorrow with oncologist at last to discuss chemotherapy .the worry is awful I used try keep busy .now I can't bebothered .hang in there you get answers eventually .I have accepted I'm going hear things I don't want to good luck 

Re: Waiting, waiting & more waiting

12 Oct 2017 14:21 in response to JEM0768

Hiya Just wanted to send you a hug and say you're not on your own. I know what a shock it can be when they're looking into something with you and other things all of a sudden appear! I had gall bladder pain April last year, an ultrasound ensued which resulted in 7 lesions being found on my liver! (Liver problem turned out to be harmless, just clusters of blood vessels) BUT didn't stop me thinking alsorts! Ct scan followed so they could look closer at my liver where a mass was found in my chest and like you an enlarged node in my lung. So the fear and speculation on my part was massive! Anyhoo, my liver condition is benign(no treatment required) haemangeomas I believe it's called. My chest mass turned out to a BENIGN 9 x 9 cm thymic tumour And my enlarged node is still just a node albeit no bigger than when they found it and it's been 18 months ( I get scanned every 9 months to keep an eye on it) Lastly I had my gall bladder out last September. So although a rough time was had it was all benign, it's not always bad bad news. All the best Julie xx P.S diagnosed with rheumatoid arthritis now but that's another story lol x

 

p.P.S 

 

i also had had a pet scan that was active in the thymus area but that was because my thymus was working overtime due to still growing, not because of cancer x

Re: Waiting, waiting & more waiting

12 Oct 2017 14:42 in response to tigercub

Thank you for your reply.

i am so very sorry to hear about your diagnosis & how long you are waiting to start treatment. I really hope your appointment tomorrow goes well & you will get a date to start your treatment.

sending you strength & support. X

Re: Waiting, waiting & more waiting

12 Oct 2017 14:44 in response to jjoollzz

Thank you for your reply, it does sound like some of your situation has simularities to mine.

can I ask if they done a biopsy on your thymus gland? I have been warned that this maybe needed, which is making me very anxious! Have you have your thymus gland removed? 

Xx

Re: Waiting, waiting & more waiting

12 Oct 2017 18:27 in response to JEM0768

Thank you .it turns your world upside down .had cancel a holiday booked for next month what performance could done without that . hubby just turned 65 self employed so at least he is his own boss .but we'll get there . positive thinking 

Re: Waiting, waiting & more waiting

13 Oct 2017 16:26 in response to JEM0768

UPDATE- Consultant rang, they have my PET report- have been called in for an appointment tomorrow (Saturday). 

Very very very nervous, not sure how I'm going to make it through this evening & tonight.

dreading what I may be told tomorrow! 

(Just an update in case this helps anyone in the future with anxiety in such a case- I did make it through the night, after a few frantic nervous hours, I realised that my nerves would not change it & it could possibly be the last evening that I could have 'wishful thinking'. So I had a nice dinner with my husband & went to bed early, determined to get a good nights sleep as I knew I would need my energy the following day) x

Re: Waiting, waiting & more waiting

15 Oct 2017 20:47 in response to JEM0768

UPDATE

just writing an update in case anyone in a similar position stumbles across this post & it may help them.

Unfortunately my core needle biopsy hasn't given us an conclusions. The sample wasn't enough. I am very gutted about this.

My PET scan has given us some answers- my thymus gland has got a growth on it, but it hasn't lit up the scan & therefore isn't 'active'- hopefully meaning it isn't cancerous. However, my enlarged lymph nodes did light up the scan :0(

My bloods have come back all clear, including bloods they have done looking for lymphoma & cancer markers.

So now I am due to go in for another biopsy (hopefully this week) to remove a chunk of a lymph node & some of the thymus gland too. This will be done under a general anaesthetic & will require an over night stay in hospital.

my consultant told me we are looking at either lymphoma or sarcoidosis.

Will keep this updated just in case it can help anyone with future diagnosis & offer some guide with how investigations work xx

 

Re: Waiting, waiting & more waiting

16 Oct 2017 15:54 in response to JEM0768

Just wanted to wish you all the very best for the biopsy next week - be thinking of you. Please keep us updated x

Re: Waiting, waiting & more waiting

16 Oct 2017 18:19 in response to samsunguk

Thank you SamsungUK 

Re: Waiting, waiting & more waiting

18 Oct 2017 12:04 in response to JEM0768

UPDATE

i have my biopsy tomorrow to remove some of an enlarged lymph node & some of my thymus gland.

 

can anyone advise on this procedure? I am very nervous & have never been under general anaesthetic before. My husband is taking me to the appointment.

 

x

Re: Waiting, waiting & more waiting

18 Oct 2017 14:17 in response to JEM0768

Hi Jem, 

I just wanted to wish you good luck for tomorrow and give you our cancer nurses telephone number in case you wanted to chat to them about the procedure you'll be having. Our nurses are available Monday - Friday between 9a.m - 5p.m on 0808 800 4040 so if you call them you will be able to discuss the biopsy in more detail which I hope will help calm your nerves somewhat Happy

Kind regards, 

Steph, Cancer Chat Moderator