topic Re: New to the Forum in New? Start here!

New to the Forum

Paul71 — Sun, 23 May 2021 12:07:51 GMT

Hi all, another new person to the forum. My story began in March 2020 at age 49 when I was injured at work detaining a drug effected person, As a result of my injury I was required to have an ultrasound on my abdomen. During this scan it was discovered I had an 11cm tumour in my left kidney. A CT scan confirmed cancer. I had no symptoms. Within a week I was being operated on and my left kidney was removed. My urologist was confident the cancer had been contained within the kidney and had not entered my bloodstream. I was scheduled for 6 monthly CT scans. My first scan was clear. Second scan in March 2021 revealed a swollen lymph node under my left arm, and two nodes in my right lung, one being 15mm in size. The radiologist predicted metastatic cancer. I was referred to an oncologist.

I was sent for a lymph node biopsy and that thankfully came back clear. I had my second Pfizer injection in my left arm a couple of weeks before my scan and it appears the lymph node had swollen in reaction to that.

Now I’m waiting to be booked in to hospital for a lung biopsy. I am really afraid. My oncologist believes the result will be cancer due to the size of the 15mm node and the fact there are now two nodes and they were not there six months ago, I have never smoked in my life. I’ll be going on immunotherapy if the result is cancer and I have been told of the side effects which are not pleasant.

I have joined this forum for support, for advice, and for friendship. It’s hard talking to my family and friends.

thanks for reading

Paul

Re: New to the Forum

Budgie — Sun, 23 May 2021 21:37:38 GMT

Hi @Paul71 ,

Welcome to the forum 🙂.

I also have kidney cancer; I was diagnosed terminal in Aug 2012. I had my right kidney & adrenal gland removed, but I had 2 other remaining lesions, one in my left butt cheek & one right against my spine in the psoas muscle. That one was inoperable because of how close it was to the spine. Their reasoning - I'd lose the use of the left leg, & I was already terminal = not worth the surgery.

Anyway, to cut a very long story short - after being on 4 other treatments & my body becoming resistant to them, I was put on immunotherapy. After 3 months was showing no sign of improvement with it, so I came off that & was put on Cabozanitib, which I've been on ever since. So unfortunately, the immunotherapy didn't work for me. But I've heard it does work well for alot of people. One of the main side effects is that it can increase the effects of any auto immune disease you have, eg; arthritis, but I'm sure the onc would have already explained this all to you.

You're young to have kidney cancer, so was I. I was 46 when I was diagnosed. But being young can help you alot with this cancer. It puts you in better stead to recover from any side effects of treatment. Although, I'm a bit of a mystery to them because I never follow any of their "rules" for kidney cancer.

Anyway, please feel free to ask me any questions & I'll answer as best I can.

My advice

- drink plenty of water to flush your remaining kidney

- seek counselling when you need it

- keep active as much as you can

- eat well, cut down or eliminate alcohol & coffee

- don't be afraid to question the doctors, they're there to make sure you understand everything.

- keep a good attitude. Attitude is everything if you want to stay alive.

I wish you all the best with your upcoming treatment Paul71.

Cheers

Budgie

Re: New to the Forum

Paul71 — Sun, 23 May 2021 23:53:04 GMT

Thanks for replying and sharing your story. It really does make me feel better. I’m the same, I didn’t really follow any rules for kidney cancer but I do have high blood pressure. I fortunate that I don’t have any other medical issues going into this thing. I had a laugh at don’t drink coffee. I had never drunk coffee until about 6 weeks ago and now I’m addicted to having a long Mac topped up at the start of each shift with my work colleagues. I’d better give up and get back on boring tea.

thanks again

Re: New to the Forum

Budgie — Mon, 24 May 2021 00:31:49 GMT

😆 It doesn't really hurt too much if you just have 1 or 2 coffees, but they do say to reduce the intake. I think if it makes you happy, keep it up. I used to drink coffee heaps throughout the day, but I'm down to having one with breakfast & one with lunch.

Have a good day 😊

Re: New to the Forum

LindaG — Mon, 24 May 2021 03:35:10 GMT

Hi Paul71, just take one day at a time till you get your results. I was a bit like you in finding out I had cancer. I’d hurt my neck and was doing neck exercises and noticed a lump. The end result was a diagnosis of non Hodgkin’s lymphoma. It does still feel strange to even say I have cancer. I think we all understand your emotions but it’s so good to have this forum to be real. Hope you can have more days of peace than anxiety. LindaG

Re: New to the Forum

sch — Mon, 24 May 2021 03:59:19 GMT

Hi Paul,

Welcome to the forum. The great thing about being here is reading all the stories from such a diverse range of people and a diverse range of experiences.

I'm sorry to hear about your cancer and your ongoing uncertanties around this.

Noone ever really knows until the results are in, and even when the results are in and even if you do have more cancer, then it's certainly not the end of your fight.

It's just the start mate.

The unknown is very scary, so my advise to you would be to harness this fear and channel it productively into your energy in fighting this.

I always try to prepare myself for the worse and if it's better, then that's a pleasant surprise.

All the best and please keep us updated.

-s

Re: New to the Forum

Paul71 — Thu, 27 May 2021 10:06:06 GMT

Thanks for your reply Linda. Your comments certainly help.

Re: New to the Forum

Paul71 — Thu, 27 May 2021 10:07:37 GMT

Thanks Sch. I’m going in for my lung biopsy in the morning and I am feeling a lot better now that things are starting to move.

Re: New to the Forum

YasT — Sat, 29 May 2021 01:30:58 GMT

Hi Paul.
What a year you’ve had!
Not sure if you’ve had your lung biopsy since you posted last weekend. I am also going through a similar experience after a tumour was removed from my jaw just over 2 years ago. At the time the scans also showed a 2mm nodule in my right lung. Recent follow up scans showed it has grown to 12mm so I had my first lung biopsy a few weeks ago. I was very anxious about it but it wasn’t as bad as expected. The procedure was supposed to take 20 mins but took twice as long because the bugger kept moving around.
The procedure was done on a CT scan table, lying on my stomach. The worst part was my aching arms from not being able to move so make sure you’re comfortable before they start. They numbed the area with 2 injections that stung for a moment. They then put long needles in to get the sample but you can’t really feel it. Afterwards you will just lie flat until they take you for an x-ray to check if you have any air leakage. I did have some but was ok after resting for another hour and another X-ray. When that was clear I was able to sit up and have a sandwich. You will need to fast from midnight the night before, including water. Just FYI. The biopsy confirmed it could be 1 of 2 cancers being either the same as in my jaw or a new lung based one so I need to have another biopsy this Friday so they can determine which in order to provide the right treatment. This will be done by sending a needle & camera down my throat. I will be given a sedative to make me drowsy so I don’t freak out and should take about an hour. Not looking forward to it but have been reassured that I will be made to feel as comfortable as possible. Can let you know how that goes if you haven’t had your biopsy by then.
I believe treatment will either be 4 blasts of radiation if the same as my original cancer that should get it and have minimal side effects. If the other type then it will be treated with 1 tablet that I don’t know much about.
The good thing is our tumours are small so hopefully treatment will be effective.
Stay strong, you got this!
Yasmin

Re: New to the Forum

YasT — Sat, 29 May 2021 01:41:20 GMT

Hi Paul71,
What a year you’ve had!
Not sure if you’ve had your lung biopsy since you posted last weekend. I am also going through a similar experience after a tumour was removed from my jaw just over 2 years ago at age 48. At the time the scans also showed a 2mm nodule in my right lung. Recent follow up scans showed it has grown to 12mm so I had my first lung biopsy a few weeks ago. I was very anxious about it but it wasn’t as bad as expected. The procedure was supposed to take 20 mins but took twice as long because the bugger kept moving around.
The procedure was done on a CT scan table, lying on my stomach. The worst part was my aching arms from not being able to move so make sure you’re comfortable before they start. They numbed the area with 2 injections that stung for a moment. They then put long needles in to get the sample but you can’t really feel it. Afterwards you will just lie flat until they take you for an x-ray to check if you have any air leakage. I did have some but was ok after resting for another hour and another X-ray. When that was clear I was able to sit up and have a sandwich. You will need to fast from midnight the night before, including water. Just FYI. The biopsy confirmed it could be 1 of 2 cancers being either the same as in my jaw or a new lung based one so I need to have another biopsy this Friday so they can determine which in order to provide the right treatment. This will be done by sending a needle & camera down my throat. I will be given a sedative to make me drowsy so I don’t freak out and should take about an hour. Not looking forward to it but have been reassured that I will be made to feel as comfortable as possible. Can let you know how that goes if you haven’t had your biopsy by then.
I believe treatment will either be 4 blasts of radiation if the same as my original cancer that should get it and have minimal side effects. If the other type then it will be treated with 1 tablet that I don’t know much about.
The good thing is our tumours are small so hopefully treatment will be effective.
Stay strong, you got this!
Yasmin

Re: New to the Forum

Paul71 — Sun, 30 May 2021 01:03:31 GMT

Hi Yasmin

I had my lung biopsy on Friday morning, and it was an awful experience. I was awake during the procedure. I had to lay on my back and they came in through my chest and I started coughing up blood straight away. After they took the samples I got what I learnt is called a pneumothorax and I had to be admitted into hospital. Basically air leaked from my lung into my chest. I am home now but my chest is still making a clicking noise when I breath.
I hope all goes well with your procedure.
Paul

Re: New to the Forum

YasT — Sun, 30 May 2021 11:21:48 GMT

Hi Paul,

So sorry to hear that your biopsy was so traumatic. How awful for you. I hope you’re starting to feel better, are being well looked after and you’re breathing is starting to settle. Also hope that the treatment you require isn’t as brutal as what you’ve already experienced.

I know I’ve certainly had moments of self pity, being scared of what the future holds and self consciousness as random people stare at my scarred & still slightly swollen jaw post surgery but I’m still here. All perfectly normal emotions as we process and live with the c-word. Not looking forward to my next lung biopsy on Friday but we just have to do what we have to do. But it does suck!

Hang in there & stay strong. We’re still here so we’re winning 💪😁.

Yas