Yet another update.: Well now I am... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Yet another update.

littlenanny profile image
16 Replies

Well now I am really confused, as I have mentioned in my last update that I am scheduled to have my left upper lung removed on Tuesday 1st September, I got a phone call this morning to say they want me in for a lung biopsy this Thursday stay overnight and biopsy Friday morning I asked was I still having surgery on Tuesday but they don't know till the results of biopsy come back surgery may be put back. When I last saw surgeon, he said they couldn't do a biopsy due to the tumor being in a bad position, has anyone got any thoughts on this sudden change or why its taken so long to decide to do this a week before surgery is due, now I don't know what to think.

Best wishes to all

Margaret x

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littlenanny
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16 Replies
Littleannies profile image
Littleannies

When I was diagnosed with lung cancer they wanted to take a biopsy from my liver but we're concerned my lung might calasps so took it from my lymph node instead, that could be a reason but I'm sure they would of said, hope everything goes well for u littlenanny

littlenanny profile image
littlenanny in reply to Littleannies

Thanks for your reply Littleannies, I think I will give them a ring, as when they rang me I didn't ask any details of the biopsy, I always think of what I should have asked afterwards.

all the best

Margaret x

elja profile image
elja

Sorry, Margaret - I've no idea why they'd do this. I really think you should have been told, though. It takes a lot of mental and physical adjustment to gear yourself up for major surgery and it must be horrible when they chop and change without explanation. I do think you should try to find out though. Do you have a Cancer Nurse Specialist that you can contact if the surgeon is too grand to talk to you?

I hope it all turns out ok - please keep us posted if you can.

Jane

littlenanny profile image
littlenanny in reply to elja

Thanks Jane for your reply, I am going to ring surgeons secretary in the morning to see if I can get any information, there are thoratic nurses at the hospital I could probably ask, I will keep you posted.

All the Best

Margaret x

Janey_H profile image
Janey_H

Hi Margaret,

I hope that you are able to get your questions answered by your team this morning.

I just wanted to say that when I was listed for surgery for my upper right lobe to be removed - I went to the surgeon just expecting to get a date for surgery. Instead she told me that they wanted to biopsy the lymph nodes in my chest first and she would only operate if they came back negative under biopsy (they had previously been malignant). I then had an EBUS procedure to get the biopsy taken. I believe she thought that there would be no point in doing the invasive surgery if the cancer was still in the lymph - hence the biopsy. Fortunately, they were negative and the surgery went ahead (but it was about a month after I had been expecting to have it!).

Everyone's cancer is very individual - as you say yours may be in a difficult place to biopsy and so it is worth clarifying your questions direct to your team. I hope that things go well for you and hang in there!

Best wishes

Janey

littlenanny profile image
littlenanny in reply to Janey_H

Hi Janey,

Thanks for your post, I rang the thoracic nurse who was there when I had the last appointment with the surgeon she didn't know anything about me having a biopsy and assumed I was coming in for op on Tuesday( the communication is really bad). she then said she would make inquires and ring me back, back she came and said that surgeon had some discussion and it was decided I had the biopsy, when I asked did she know why I had to have it she just said the information would help the surgeon and it would be a shorter operation time, the biopsy I am having she said is a CT guided biopsy.

My op has been put back to next Friday as with it being bank holiday Monday the results wont be back in time, so I go in tomorrow dinnertime and have the procedure Friday morning and I might be in a few nights, What a performance, I will be glad when its all over, thanks for reading my post and I will sent another update when its all over.

Wishing you all the best

Margaret x

elja profile image
elja in reply to littlenanny

I had a CT-guided biopsy. Although I don't have a problem with needles, I must say that putting a needle between my ribs and into my lung sounded a bit brutal! However, it was fine. You do have to lie extremely still for a longish time, though, so get yourself as comfortable as possible at the start. The actual needle bit was no problem at all - no pain or discomfort. I was able to come home by taxi by myself afterwards (though they took a bit of persuading that I could manage on my own).

Good luck tomorrow and I hope your surgery goes ahead as planned next Friday.

Jane

Janey_H profile image
Janey_H

Hi Margaret

I hope all goes well with the biopsy tomorrow morning. I also had a CT guided biopsy and as Jane above says, was able to come home the same day. Hopefully you won't be kept in for long.

Do keep us informed as to how things are going and I hope all goes smoothly for you.

Best wishes

Janey x

littlenanny profile image
littlenanny in reply to Janey_H

Hi Jane and Janey,

I went down for the biopsy Friday morning and as you say you have to lie still which seemed a while, it made it worse as I had to lie on my tummy which is not a good position for me as I have a back problem, anyways I didn't feel the needles as the area was numbed just a bit of pushing, when it was over I was relieved but then the radiologist said the couldn't get a sample as the tumor was to small and behind a rib, he said if it had been bigger there would have been no problem, came home the same day, now waiting to see whats happening next and if my op is still on, radiologist said he was emailing surgeon and someone would be in touch I will let you know what happens

Best wishes

Margaret x

elja profile image
elja in reply to littlenanny

Sorry to hear that - you seem to be having so many delays. I hope they are able to go ahead with your surgery without any further tests or procedures. Sometimes it feels as if there's one hurdle after another!

Please keep us up to date if you can.

Jane

Janey_H profile image
Janey_H

Hi Margaret - thanks for the update. Sorry to hear that they weren't able to get a sample after all that. At least you are back home now and have that over with though. Hopefully they will be in touch soon to let you know the next step and whether they are going ahead with the op.

It sometimes feels like forever to get on with things but I am sure it is just the clinicians double checking to make sure that what they are doing is appropriate and that they aren't doing unnecessary procedures.

Try to enjoy your bank holiday weekend and keep us informed next week as to how things go.

Lots of love

Janey x

littlenanny profile image
littlenanny

Thanks to you both for listening and your reply's , I will see what next week brings and try to enjoy the bank holiday weekend hope you do too.

All the best

Margaret x

LorraineD profile image
LorraineDPartnerRoy Castle

Margaret

Sorry to hear the biopsy did not go smoothly. Hope you hear soon what next. Not easy when you are preparing for one thing and then the goalposts move.

best

Lorraine

littlenanny profile image
littlenanny

Thanks Lorraine,

Haven't heard anything yet or if they are definitely going to operate this Friday or not, I take a blood thinner so I need to know in advance, getting a bit stressed now , if I don't hear something tomorrow maybe I should ring to asked what is going to happen next.

Margaret x

elja profile image
elja

I'm not surprised that you're getting stressed. I do think you should phone and ask what's happening. I think it's very thoughtless of them to leave you hanging like this - and unnecessary. Even if they're not sure how or when to go ahead for some reason, I'm sure you'd have felt better if they'd got in touch with you to explain the delays. I do hope you get something definite soon.

Jane

littlenanny profile image
littlenanny

Hi Jane,

I will ring in the morning, my daughter said I should have rang today, but I kept thinking they would ring me, I will let you all know whats next, I cant concentrate on anything at the moment its the not knowing which is worse, thanks for listening.

All the best

Margaret x

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