Shocked.

[Alfiebax2]

As you all know had LVRS in Oct 2018 with good results and recovery .well 6 months down the line I've just been to RBH for another CT scan and to also see my consultant .He told me a nodule in my operated lung has grown quite dramatically and I have to have a Petscan and possibly a biopsy as it probably is cancer .Shocked isn't really the word I felt when he told me this . Upshot is I saw him on Thursday 4 th april and I'm having the Petscan on Monday 8th April . I'm hoping it's not the dreaded big C but we shall have to wait and see . Love to you all Babs♥️♥️♥️♥️

[sassy59]

Thinking of you dear Babs and let’s see what happens. Hope all goes well on Monday. Xxxx 😙

[Alfiebax2 in reply to sassy59]

Thank you dear Sassy , hope you are well .I'm a fighter so I won't go down without a fight .

Take care Babs ♥️

[sassy59 in reply to Alfiebax2]

I’m ok lovely lady. You stay strong and never give up. Xxx 😘💖

[Hacienda]

Morning Babs, I can understand how your feeling, I had a Nodule on my right lung, luckily it didn't grow. My Valves that I had inserted last June have stopped doing their Job. I too had a CT Scan Yesterday. Will know the results hopefully very soon, I may have to have them reset? I am back on Oxygen 24/7. This Dam COPD plays with our Heads as it does our Lungs. Hope all turns out well for you Babs, You will know on Monday Hun. Got everything crossed for you Hun. Love n Gentle Hugs going to you. xxxxx

[Alfiebax2 in reply to Hacienda]

Thank you my darling and im so sorry the problems you are having. I'm hoping that Monday will say it's not the big C but if it does I will fight like I always do .Sending love to you and hope your problems get sorted .Take care lots of love Babs ♥️♥️♥️♥️

[Hacienda in reply to Alfiebax2]

We are from the same Fighting Club my Darling, all for one and one for all is our Moto. Yes, we have to stay strong and Positive, The only way forward. Will be with you in my thoughts on Monday Hun. XXXX

[Caspiana]

Hi Babs,

An awful shock for you. I hope it is not the big C and will be thinking of you on the 8th. Please do keep us updated although I know it must be quite stressful at the moment.

Sending you love and hugs,

Cas xx 🌷

[Alfiebax2 in reply to Caspiana]

Thank you Cas but I intend to fight no matter .Hope you are well and thanks for your thoughts and wishes ♥️♥️♥️♥️

[skischool]

Oh Babs,that must be really frightening and after all the effort and courage of undergoing the LVRS procedure.me and Scruff's are crossing fingers and paws that this is something less sinister and will be resolved very soon.

Love and support

Ski's and Scruff's xx

[Alfiebax2 in reply to skischool]

I'm hoping so as well ,thank you for your thoughts and good wishes .Will keep all informed .

Love Babs xx♥️

[Croydonia]

Hi Babs, as you might remember, I had lvrs on my right lung two years ago, and lo and behold last year they found a nodule in that lung. I was told that they are fairly common, and the majority are benign. Mine hasn’t grown, and they have written to say no further investigation is required. I did ask if it was possible that all the many xrays and scans I’ve had could be responsible. This was denied, but it makes you wonder. I think you might well find it’s not a problem, and I do hope this is the case. By the way, the registrar I saw on my last appointment said they won’t be operating on the other lung, as it’s too risky, but originally this was the plan. They are referring me back to respiratory clinic. Anyway I hope you get very good news when you go, I’ll be keeping my fingers crossed for you!

[Alfiebax2 in reply to Croydonia]

Thanks for your good wishes and hope mine is benign too .much love ♥️

[SquirrelsHolt]

Try and remain strong during these times of uncertainty. Easier said than done I know. Will be thinking of you on Monday. Good luck.

[2greys]

Hi Babs,

I can truly empathise with your situation, I know just what it is like to get news like this. As devastating as it is, please know that even if it is the big C that there is a treatment that is very successful. Having already had LVRS there is the possibility that further surgery might not be a viable option for you, but there is a type of radiotherapy called SBRT or SABR (both the same). I have seen research that suggests that SABR actually has a higher survival rate than surgery. I had SABR last year and so far so good, in January my consultant said "With caution, I think we may have cured you" the tumour continues to shrink. The results were good enough that I am able to skip the last of the three monthly scans and go straight on to six monthly scans, which should continue for the next four years after which I hope to be declared cancer free.

The whole experience was that it is a totally pain free, noninvasive procedure that lasted for about 45 mins for each of the five doses. The only evidence left is the four tiny dots of the targeting tattoos, done along with a low dose CT Scan.

[Alfiebax2 in reply to 2greys]

Thank you for the information , I hope it's benign but if not the fight begins again .Take care

Love Babs ♥️

[Hidden]

Wishing for the very best outcome for you Babs. 💪😘

[Alfiebax2 in reply to Hidden]

Thank you ♥️

[maggiewhiteley]

Hi Babs, been hoping to hear from you, but didn't dream that you would have heard such upsetting news, but please keep your pecker up, and stay strong. Maybe things will not be as dark as being painted now. So many of these nodules turn out to be being. You deserve a good break. Hugs xx. Maggie

[Alfiebax2 in reply to maggiewhiteley]

Thanks Maggie I'm a positive person anyway .if it is I will fight it if it's not carry on being me .Thank you so much for your good wishes I will know more . ....hopefully on Monday after the Petscan .Hope you are keeping well Maggie .

Much love Babs ❤️😘😘😘

[HungryHufflepuff]

Thinking of you, especially on Monday. It’s good in a way your appointment is quite soon, because waiting can be really hard. Sending you very best wishes 💐

[Alfiebax2 in reply to HungryHufflepuff]

Thank you so much 😘😘😘

[Comino2]

Wishing you all the best for monday xx

[Alfiebax2 in reply to Comino2]

Thank you xx

[Sharaybia]

Hope everything goes well Monday and praying God its not the big C. Stay strong because everything will be alright and keep me updated as well

[Alfiebax2 in reply to Sharaybia]

Thank you xxx

[Sharaybia in reply to Alfiebax2]

You're welcome

[Carnival567]

I too have a lung nodule which has enlarged dramatically and have been through the CT scan lung function tests and PET scan palaver. At the moment they are saying it is benign, thank goodness. I do hope you get the same result. Good luck on Monday xxx

[Alfiebax2 in reply to Carnival567]

I hope so too and thanks xx

[Ergendl]

Oh, what a shock for you, Babs. All the best for your scan tomorrow. Do let us know how you get on.

[Alfiebax2 in reply to Ergendl]

Thank you and I certainly will keep you all up to date .

Love Babs xx

[watergazer]

Thinking of you babe. Fingers crossed that everything goes well The c word is a nasty shock. I discovered it on my hospital notes in big letters Fortunately it was bronchiestasis that was the shadow on my lungs. 🤗 Anita

[Alfiebax2 in reply to watergazer]

Thank you hunni . You take care xxxx

Love Babs♥️

[Dedalus]

Hope it is a negative result for you. All best wishes x

[Burbagegran]

Hi Babs,

Just got back from a holiday today and only just read your news. I hope all went well for you on Monday, keep on fighting.

Joan x

[Alfiebax2 in reply to Burbagegran]

Hi Joan hope you had a great holiday .I'm now playing the waiting game for my results .I think I may have some news tomorrow as that's when all the consultants meet and have a discussion about certain patients ,they discussed me last Friday result being I had my Petscan on Monday .I think the next thing is a biopsy but I will keep you all up to date with what's happening .Thanks for your good wishes

Love Babs ♥️♥️♥️♥️

[Burbagegran]

In the meantime, I'll have my fingers crossed for you! x

[Alfiebax2 in reply to Burbagegran]

Thank you xx

[SquirrelsHolt]

Keeping everything crossed for you on Monday. It's very difficult but try and stay positive. x

[Alfiebax2 in reply to SquirrelsHolt]

Just waiting for results now .Thanks for your good wishes xx

[Samjeff]

Hi I’ve just been reading your posts from 5 months ago I hope the results came back negative x I had my initial consult about the LVRS have had bloods done next is the dye in the veins thing 20 01 2020 another lung function test then they decide if there’s not enough mass to get and improvement will be minimal the won’t do it tho he said I have emphysema but also furred bits in there too. So waiting for next appointment now. May I ask again were you able to come off oxy and did they need to use blood, it will be done at Papworth if they go ahead , I hope you are well Thankyou for listening Sam xx

[Alfiebax2 in reply to Samjeff]

Yes my results were that the tumour had gone completely . Not likely to come back . Yes I came off oxygen after a week post op .Haven't used it since and I'm doing really well at the moment . My consultant doesn't want to see me for a year although I still go to the Brompton every three months for CT scans and lung function tests as this is part of the trials I was on . No blood was needed post op or otherwise .I wish you well in your whatever procedure you have and keep us informed .

Best wishes Babs x

[Hacienda in reply to Alfiebax2]

So Happy your Doing well Babs, wished I had this instead of the Valves. I now get on with the best of my ability and my mate oxy does help an awful lot. Stay Strong Hun. Love n Hugs C. XXX

[Alfiebax2 in reply to Hacienda]

I'm so sorry hunni that the valves aren't really helping you very much When I had my bronchoscopy to determine if my lungs were suitable for surgery ,I prayed it would be LVRS although more invasive and recovery is longer , I'd read up on the valves and it seems the success rate was better with LVRS . I hope you improve with time ....and if not offer you an alternative.

Much love my friend .

Babs ♥️♥️♥️ xxxx

[Hacienda in reply to Alfiebax2]

Thank You Babs. I Loved the Valves, The nice Shiny Bling, They only lasted 9 Months, Then I had a Bronchoscopy to find them, They are still swimming around on the lower Deck. Ha ha, So they gave me a "Wash" instead, this was without any Sedation, Ugh. After much X rays, Scans, Echocardiogram,( Right Ventrical closed). They had a Meeting in July, the outcome was , No more Procedures, No LVRS, which is what I was hoping to have. So my Consultant held my hands and was so sorry for me, however she said, carry on with your Exercises, & Positive attitude, your Oxygen helps as does your Meds. I am hoping to go back to Rehab, as She did write to them referring me once again. I can't complain, I have had excellent Treatment at Both Hospitals( QE Transplant Unit) also. So I just get on with it, Right now I feel fine, as long as I have my mate Oxy & Inhalers, and of Course my Lovely Hubby. Take care Hun. Love n Hugs, Carolina. xxxx

[Alfiebax2 in reply to Hacienda]

Oh darling Carolina that is such sad news I wish you were offered LVRS in the first place but never mind .Yes a positive attitude does help I've always tried to stay positive all my life in fact my surgeon said because I was so positive my recovery was fast . Sometime life sucks but I think it makes us stronger .You keep battling on my darling and I wish you so much love after all you have been through .

Big hugs and love Babs ♥️😊♥️cxxx

[Hacienda in reply to Alfiebax2]

😘♥️⚘⚘⚘Thank you Babs

Much Love xxx♥️

[Samjeff in reply to Alfiebax2]

Thank you I’ll let you know their decision in January. This site has been of enormous help to me I do appreciate all the knowledge the lovely people who post their experiences thanks again Sam x

[Samjeff in reply to Alfiebax2]

Hi Babs sorry for all the questions but how is your breathing now, was it worth the op are you 30% better ? Have you more energy , it seems a big decision if I get offered op have the dye thing on 20 October then 20 jan 2020 lung function test and their decision??? Thankyou Sam x

[Alfiebax2 in reply to Samjeff]

Hi I don't mind you asking questions , I'm happy to help if I can .In answer to whether I'm 30% better I would say more like 60% and yes I do have more energy .Only thing is as you feel so good I have to keep telling myself to slow down . If you get offered it I can only tell you how i felt and I wish I had been offered it sooner .It's not a miracle cure but by god it's given me my life back . It's a year on 8 th October since my op and all I can say is I feel honoured to have had the opportunity to " get my life back" .

Good luck to you Oct and then Jan will soon be here.Keep us informed and if I can help with anything that is worrying you or you need to know , don't hesitate to get InTouch .

Babs xx

[Samjeff in reply to Alfiebax2]

How long does the initial recovery take? is it very painful, I know people are different but your op sounds very encouraging thank again Samx

[Alfiebax2 in reply to Samjeff]

Hi Sam I personally didn't find it too bad ....painwise . After the op you spend approx 3 days in the high dependency ward where you can administer morphine as and when you need it .Then transferred to a main ward for approx 7 days ( this was how long I was in ,10 days ) everyone is different .Once back on normal ward physiotherapists get you on an exercise bike and walking round the block .Also in high dependency ward you have a drain in and most are removed after 3)4 days .Recovery is supposed to take approx 6 weeks some people take longer .I had basically recovered in 4 weeks which my surgeon was very pleased about .I'm a fighter anyway Sam and I have refused to let my condition rule my life. There are highs and lows but I think this is down to anaesthesia and medication . Hope this has enlightened you and makes you more willing to go for it . All the best

Babs xx

[Samjeff in reply to Alfiebax2]

Sam x

[Samjeff in reply to Alfiebax2]

Hi Babs and everyone who knew in 2016 I wanted to go family visiting in the US well I made it. They American Airways have changed certain rules they accept your Inogen One G3 no problem no letters required just enough battery time . Hope to have a yes or no on the LVRS. In Jan 2020. All the best Sam x

[Alfiebax2 in reply to Samjeff]

So glad you made it to America and thanks for the info . Please let us know how you get on in January .🤞🤞and good luck .

Love Babs x

[1968]

So sorry to hear this, hope its all good news for you .

[skischool]

Well Babs,and this will be useful to Samjeff i would be very interested to know if your latest PFT's have confirmed your 60 % improvement,i am in no way doubting your claims and subject to a couple of the usual tests,i.e another echocardiogramme and a quicky discussion with my Italian butchery team (sorry forgot to mention that the thoracic surgeon is Italian)who i am overdue to meet i may well be undergoing similar invasions within the next few weeks.

An increase of 60 % would be invaluable although that would have to be effective in both FEV1 and DLCO and still only give me an increase in FEV 1 to 34% but if that meant i could ditch the ambulatory O2 it which would give me so much more freedom to travel and perhaps even the ability to reside in my little finca in Spain.

I know you are not in a position to answer questions which are individual to us all but i am just curious as to whether the numbers crunched actually measure against your obvious improvement which i hope will continue for ever.

Love Ski's and Scruff's xx

[Alfiebax2 in reply to skischool]

Well Skis it may not be 60% in numbers but it feels like it .My LFT have all come back up and great readings .So much so that my consultant doesn't want to see me for a year , although I'm still having LFT and CT scans every three months .I ditched oxygen a week post op .I'm having more LFT and CT scans next week at the Brompton .They are very happy with me . Thank you for your good wishes and I wish the same to you . Good luck .

Love Babs xx

[Samjeff in reply to skischool]

We don’t often meet anyone who’s had this LVRS done or people to understand what they can’t see... the vacant look I’ve had when I say I can’t breath so hope all well for you too Sam xx