Anybody have a transverse or VATS biopsy and can explain them?

[Lin76]

Have Langerhans disease but its being called other names until doc can get lungs biopsies of lungs end of October. Any info appreciated.

[mrsmummy]

There may be some useful information here whilst you are awaiting a response.

healthunlocked.com/search/%...

[Lin76 in reply to mrsmummy]

Thank you!

[dizzie-wh]

Hi Lin76, Yes - I had a VATS procedure done three and a half years ago in St Georges in Tooting. My surgeon did a biopsy and performed a "talc pleurodosis". It involved two or three small incisions and a general anaesthetic (obviously) then they use a camera to guide them to where is needed - can't recall how long the op was BUT it was all performed reasonably swiftly and I arrived back on the ward with a drain in. Things went a tad strange for me, in that, I had spinal surgery years ago and therefore have very little space twixt my ribs. This meant that I couldn't hold the drain tubes in place and leaked all over the place BUT hey ho that wasn't the end of the world! I also developed an infection afterwards which meant I was in for 10 days instead of the 3 days which I understand are the norm. However, all in all it went smoothly and the staff there were amazing!! Everything was very efficient and, although a very busy hospital, I received expert nursing care all the time I was an in-patient. Otherwise I would say a simple op followed by a "kick by a horse" type pain that debilitates you for a few weeks BUT nothing unbearable. May I ask where you are having your done?? All the very best Diz xx

[Lin76 in reply to dizzie-wh]

I live in usa. Idk anything more about it,other than most likely at the local hospital? I just met the pulmonologist 1mo ago saw 1x then im to f/u with him after oncology done with me tody,but onc apt oct 3rd. Then my vacation then my dr is on vacation then i resee him the 24th. He has in notes a transverse biopsy first,although i seen no success stories on that getting a good biopsy,then he has if that fails he would suggest vats. Idk if pulmonary doctor does or thorasic being they cut you. Idk. The pain worries me,plus i live alone have little assistance ny family,no one visits much so just worridd my hospital will keep me long enough if they do vats. I do not know if thisworth it just because im not sob or sick,just have glass opacities oval in shape a areas of small cysts growing which soud like all i read on langerhans except it has many cysts in articles my doctor int explain (first pulmonary and seclnd pulmonary doc) they are dismissed by me if they can not explain. I did my homework but still need someone who at least is somewhat knowledgeable more than myself,as i can talk myself out of anything,but seeing this growing i lung from CT x 3 i want to know if Langerhan disease or wha? Thankyou for answering me so much. I go in less than 2 hrs to geg mri of skull. Claustaphobic so got xanax to take half hr before the test. I want to thank you again.

[dizzie-wh]

Hi again Lin, Just done a bit of "Dr Googling" re Langerhan and was all a bit confusing all round. It seems this could be a very rare form of cancer BUT also appears that - if a biopsy is obtained to determine whether it is or isn't - then it often shows a BRAF mutation. I am now on Targeted Biological Therapy - so looked up treatment and it suggests (if that mutation is found) it can then be treated very successfully with two Targeted Drugs called Tafinlar and Trametinib (trade names for unpronounceable real names), which then needs no more chemo. Obviously, because they are not sure then they are really wanting to get a biopsy! When you talk of a "transverse" biopsy we seem to know that as a CT biopsy in the UK. That is reasonably painless and done under the CT scanner and then a needle is passed thru to get to the spot needed and to obtain a biopsy. I have had 3 of these and it just involves a local anaesthetic of the area and -honestly- you don't feel a thing!! SO get past that and let's hope they manage to get a tissue sample that way??! Otherwise the pain from a VATS is truly not that bad. I also live alone (apart from my Grandson) and managed pretty well as long as I did the exercises they suggest and walked daily.

Feel for you having a Brain Scan BUT hey ho - has to be done! Good luck with that, hopefully will be over before you have time to panic about it. Love the headgear they put on for that! Bit like a American Football guard!

I really hope you get some definitive answers soon - think not knowing and waiting can be worse than the actual diagnosis??! Also suggest you contact Andrew Schorr from Patient Power in the US. Have met this guy and he is SO helpful and your being in the States helps. You can also find him on Facebook. Do mention you have spoken to Diz in the UK or Glynis - he'll remember me I know. Apparently Patient Power is very well-respected in the US and he may well be of help to you when you know more.

Sounds like your team are doing all the right things and doing a "belt and braces" job of covering all angles. Good they have also sent you for a brain scan as a precaution. Do make sure you write down any questions and insist they explain it all to you in understandable answers. Information is power!

Love from across the Pond

Diz xx

[Lin76 in reply to dizzie-wh]

Thank you Diz xx Doc said transverse down mouth into lung?? I will go..I need to know. You are so right the unknown is worse. It would be great if its just nothing..one can pray! Thanks for looking all that up! You write beautifully. I will write down questions. Yes I need a BRAF biopsy I think. Im praying MRI of skull is negative,and its just something like head ache related to age? Ha ha. I had questions even had my daughter the nurse with me last time and she didn't ,She was very non informative ,hope the 3rd she explaines more to me? She did say if positive she sends ppl down to a different dr in town??? Like I appreciate shes close but didnt even explain the different labs but they were ok too. I appreciate the VATS info. I just don't get who does the actual procedure? Thorasic or pulmonary or both. I guess thats a month away..today has it share as it is to think about. Right now I'm thanking God it's not in skeleton scan Its sunny and going down to 68 degrees today c/t the high 80 's we did have 4 days ago record high of 91!!! Hope it a good weekend! Thankyou!

Across the Pond! Enjoying the cooler crisp AIR,

LIN xx

[dizzie-wh in reply to Lin76]

Hi again Lin,

Ah - now I get it - re the getting biopsy down throat!! We call that an endoscopy. Had quite a few of these too- so now consider myself an "expert" LOL. They numb your mouth and throat and then pass a tube down with camera attached (NO - not a Pentax) and clip a part at the top of the lungs. They give you sedation for that too. SO not too bad - honest! It's all done as an out-patient and you're home in a couple of hours.

Weather sounds wonderful there! You say cooler/crisper weather here?? Wet, grey and miserable is what comes to mind from me!!

I'm sure your headaches are probably stress-related and why not?? Fingers and all limbs crossed huh??!

Pretty sure that if you do need a VATS it's done by a Thoracic Surgeon not Pulmonary. The other down the throat would be done by radiologists usually- well that's in the UK anyway.

You say if positive they will send your "ppl" to another Dr??? What's ppl??

Love and envious hugs for that super weather.

Diz xx

[dizzie-wh in reply to dizzie-wh]

Lin, Just a quickie - whereabouts in the US are you?? Cos I will look up what's available as support/info for you re Patient Power.

Love Diz xx

[Lin76 in reply to dizzie-wh]

Hi thanks for all the info !! Our summer was alot of rain. Don't think its like this normally! We are getting a beautiful fall. I am so happy you have read so much on this. I can't any more I appreciate available support. You kinda made me understand the importance of lungs biopsies i truely don't want as it too far away October or November and i am afraid. I will go,but its too long to wait! Lol. Like hurry up! I only have x amt of brave moments. I do not see doc til 24th. I live in turtle creek pa near pittsburgh. Its on the eastern coast but west in the state itself. My headaches can be stress,I complained in April? I get the nitty gritty of oncology result tomorrow. I see pulmonary doc october 24th. I was thinking its thorasic too but who knows?They do open heart ehere I am going so I have a good doctor I hope,all the ICU nurses and respiratory care ppl love him. He did alot of his critical care rotation in Mayo Clinic which I read was great hospital. I can't afford that though. I am in a local hospital I use to work there. I now am financial hardship there. I went to a "bigger" "specialist" downtown pittsburgh even different hospital and that dr ate last couple bites of lunch stunk like onions drank his freaking diet coke and was rifting indigestion and unable to load the cds (3) of them and couldn't! I was disgusted. I had tried to get 2 mo ago the doc i have now...i searched him out "backdoor",LOL. I went to the hospital to get my records told a couple respiratory girls how I've been yanked around and later that month,that doctors nurse was calling me! To Take ME on as a new patient! I was extremely happy! So yes he's doing all things in right direction. I just did not see point of getting, biopsy that isI heard and read there are no cures. Idk? I do not want to be a "experimental drug patient". I am not sick feeling. I have some pain. Most my huge pain is from Nut Cracker Syndrome. I was born with it. My left kidney vein is all tangled around artery and aorta. My kidney arteries are clogged and my arteries in heart. Not bad enough to stent. I am not looking for problems as i refused to have surgery on that! Had a dr lie to me and that was that! I do see a cardiovascular dr every 3 months. I had hypertensive crisis once passed out 3 times in last 3 yrs. My teeth went through jaw last time had to have some slight plastic surgery on chin! I do not want to get sicker or be operated on.. i kinda just want to go when my time comes. I seen ppl do all sorts of surgeries to either live longer more botched up or die of complications related to infection. I had 2 major surgeries in past..they were awful. I have alot of health issues. Mostly all were auto immune. This Langerhans they havent quite classified as full blown cancer its both cancer and auto immune. Its an accumulation of wbc that clump and make tiny cyst in your lungs and they can grow aggressively if you smoke cigs. I quit Jan 2017. I just can say..keep doing a yearly CT but I do want to know. I hate to say this,but you get better care with that diagnosis than esonophil granuloma. I had great care once i explained my ncs nut cracker syndrome c/t htn hypertension. I was told clevland clinic does that surgery,once again..can't afford that. So..when I see the kids who have Langerhans and what they go through (its awful), i feel guilt complaining or even worried or talking about me. But then I have moments of bravery where I want to find out. I can deside on treatment when i cross that bridge. Like i don't feel short of breath or anything,just pain and it is mostly the ncs. Occassionaly i have real bad right lung pain. They are both orphan diseases. How lucky! So I am praying alot Diz. I really appreciate that patient power. All you told me too! MORE than docs so far and i respect the patient explanation more than the doc. I have to write that info down i dont know how to save an email or note on here. Not real great with computer at all.

Just had 2 beautiful deers in my yard,tried getting a peek and was going to try a picture but they moved on. DEERS are so beautiful,they are my favorite woodland animal.

Just put news on,largest mass gunshot happened on the las Vegas strip. Largest in usa history here so far now. Terrorist! What a world! All the little children growing up in this type of world Diz it is awful. Thankyou Diz. Xx I love your writings

[dizzie-wh in reply to Lin76]

Hi again Lin,

Sounds beautiful, where you live, and it must be wonderful too to see deer in your garden! I know they're supposed to be destructive to trees etc BUT such lovely,delicate creatures. Especially when they jump with all four legs in the air! Better and more clever than a jumbo jet in so many ways!!

So pleased to hear you now have a doctor, who you have faith in. It's really important to be able to ask questions and be answered honestly I reckon. Yes - I do think he is carrying out all the right testing and I hope your meeting went well with him or his staff??

Like you I had no symptoms, and don't have any right now, and my tumour was found accidentally when having a routine chest scan for asthma and COPD. For that I feel myself to be very fortunate. I wasn't in pain, had no extra breathlessness etc etc BUT suddenly I was Stage 4 Non-Small Cell Lung Cancer. I suppose the drugs I am on are "experimental" to a degree BUT the first I was on Gefitinib had only just been licensed in the UK a few months before my diagnosis and then I was lucky again to have my biopsy tested for mutations (again they had only started doing that in the January) and that came back with a EGFR mutation. From all the progress being made there is more and more proof that genetic testing is the way forward and I say "thank goodness" - it means a tablet a day and various side-effects BUT the drugs are keeping the cancer growth at bay!

Than in December last year cancer started to spread again- the body/cancer finds a way to get over the initial mutation and grow again. So another round of ways to get a biopsy and eventually got one, which proved to be another mutation - T790M. Again, then, the drug used for that Tagrisso had only been licensed the month before I needed it!! I sound very technical about all this BUT when you're in the midst of it, you just have to know all the ins and outs of the treatments and why etc.

SO all in all I'd try and get that biopsy and see if there is truly cancer there or Langerhans- sooner you know then the sooner the correct treatment plan can be put in place. The US is way ahead of the UK with Immunotherapy and Biological Targeted drugs (as I'm on) - so I'm sure your nice doctor will find a way thru!

Do remember that the reason Lung Cancer is one of the biggest killers of people is that it doesn't give any real symptoms until things are too late for many people. You sure have a load to carry what with Nutcracker Syndrome as well - I'd never heard of this before so had to look it up- not nice at all!!

Really hope your appointment went well and you know when they are gonna try to get the biopsy perhaps?? Did he give you brain scan results too?? I've got a brain - I was very relieved to discover that LOL !!

Do keep in touch and I'll try to explain things for you if needed. May not know it all- but do have the T-shirt to say I know a bit more than some!!??!

Love and ((((hugs)))0 from across the pond !

Licks and slobbers from my two wire-haired dakkis too!

Diz xx

[Lin76]

Xoxo to doggies. Xoxoxoxo to you. I will tell you tonight or early tomorrow about if i got a brain or not ha ha. I thank you for every tid bit any morsel i can get. Apt at 1120 today. Pulmonary the 24th. Oncology today. Cardiology for ncs 25th. I just get yearly ct and blood work and urine cks for blood. Labs on everything! So i guess lung biopsy after 24th when i get consultation again with pulmonologist. I like him,but i am in a suburban hospital. Most of the real specialist for all most people would say,"go downtown" thats where are "famous"teaching hospitals are. But i went to a "specialist" there and he totally shrugged me off as oh well. You smoked. I just had my lunch so pardon my burping and couldnt find my cells and cysts clump to even show me on cd i brought with me. It was packed in there liked sardines and they are one of the "best groups" , and i did not get good vibes there,or like him,my gut was in a knot. So this is a good younger more information type dr,who isnt a langerhan specialist but i liked him,i felt safe there. It is a hospital i worked in and in between both my kids. Oncologist would send me downtown she said if in my bones or skull. She said she don't do langerhans. So..i just am in the waiting game. Like you said about no symptoms ect i feel better than ever coz i quit smoking. And the lungs didn't clear up,they grew more little cyst. So yes the sooner the better. Keep in touch and i starred your name on my email so i can always ask you questions. I learned a lil bout oncology not much. I understand my ncs better,elected no surgery. I think if i lived this long with that thing I'm doin great! Seriously. I have weird pains in my lungs but that ncs is really painful but its all intermittent,not constant. Im active and trying to stay that way. I need encouragment thats all. What i use to do makes me such a bad patient :/