Any Cardio Thoracic (or Associated Speciality) Drs around - VATS procedure advice needed

[LovedFedAndNoonesDead]

I posted this in Chat yesterday but am adding it here in the hope someone will see it and be able to help.

I know this is possibly a very specific question which few people can answer. I also know I’ll probably end up rambling but I want to give as much info as possible.

3 weeks ago I had a chest X-ray that revealed something of concern that had not shown on a previous X-ray 4 months previously. The X-ray was done in preparation for starting a new medication for arthritis and not because I was in any way unwell (though, somehow, it’s made it only my notes that I had the X-ray for persistent/prolonged cough - which I keep putting the record straight about whenever I’m asked about it). Because of this I was told I was being referred for investigations under the 2 week optimal lung cancer pathway.

In the past 3 weeks I’ve undergone a CT scan with contrast, seen a consultant and had an ultrasound to consider a needle biopsy of a 4cm x 2cm lump on my internal chest wall; but because of its position, somewhere behind my shoulder blade, that idea was discounted so I was told I would need an MRI to monitor its growth, first was told it would be done in 6 months time but, later the same day, told it would be done immediately, preferably within 2 weeks. The most recent update today is that, my case has been discussed in the relevant MDT yesterday and, while they now believe it’s a lypoma that has herniated into my chest cavity, but they can’t be certain just from imaging so, instead of an MRI, I am to have a biopsy done via a procedure called VATS.

I have been looking for information about this procedure ahead of an appointment with a cardio thoracic surgeon and consultant plastic surgeon to discuss the procedure, why they’ve opted for that course of action and when it’s going to be done. I don’t actually know when the appointment to discuss this will be or when they will do the procedure.

Everything I’ve read says patients will have a chest drain in situ and will be in hospital 2-5 days post procedure depending on recovery.

I was wondering if anyone has knowledge of this procedure and can talk to me about what I can expect. I have young children and my husband will have to take time off work to help out with them if I’m in hospital or needing time to recover afterwards.

My husband had this procedure last December, his was pre cancerous and he recovered very quickly.
He’s 74, had a chest drain for about 10 days because they removed half a lung, home on day 4 and self managed the drain.
Obviously it was very uncomfortable at times but well controlled with paracetamol and ibuprofen.
After it was removed he was back to normal, walking miles with the dog. 6 months later and you’d never know he’d had it done.

Thank you for this. I’m glad to hear your husband is doing well since his surgery and that you’d never know he’d had it done!! Did he have any restrictions on activities such as driving once he came home from hospital?

Until I have the appointment I don’t know if they will be removing the whole mass or just taking a biopsy - it’s one of the many questions I have written down for the consultants when I see them. I was hoping it was just going to be a day case but, the more I read, the more I realise that was an unrealistic expectation and that I need to plan to be in for a few days.

Fingers firmly crossed for you 🤞🏻
DH isn’t driving at the moment so I don’t know about that (he’s had a couple of fits, waiting for his license to be renewed), I imagine that probably a few weeks?

So, I have my appointment with the thoracic consultant tomorrow afternoon, and I will admit I’m feeling rather anxious for a few reasons

• when I was seen in clinic by the respiratory consultant on May 10th following the CT scan, he felt initially the the mass is likely to be benign and nothing to worry about and the plan was to do an MRI in around 6 months; by the time we’d driven home and popped into the supermarket (around 2 hours later), we’d missed 4 phone calls from the consultant and he had changed his mind and wanted to do the MRI immediately - this then changed after the sarcoma MDT meeting on May 18th to being the VATS.

• when I had the second conversation with the sarcoma nurse specialist last Monday (24th May) she said they were looking to pencil in the initial appointment to meet the 2 consultants (thoracic surgeon and plastic surgeon) around the 13th June with procedure towards the end of June; as they’re quite busy and it’s important they both see me to discuss the procedure etc; however, when I finally got given details of the appointment tomorrow (was called late Thursday afternoon), they can only get one surgeon so have booked me in to his first available slot as they don’t want to delay things.

• everyone I’ve spoken to in the last 7-10 days apologises that it’s taking so long to get things sorted out and get an appointment confirmed; that, while the consultants are busy people, my care is more important which is why they aren’t waiting for both to be available. Plus the consultant I’m seeing has had 2 clinics merged and so, instead of 15 appointment slots, he only has 7 and so is seeing the most urgent cases first (and I’m top of that list. My initially chest X-ray was only done of 26/04 so it’s barely 4 weeks since this all started.

• they are actively encouraging me to bring someone to the appointment with me - thankfully I’ve been able to arrange for my elderly MiL to have the children while we go tomorrow. My nursing background says they do this when things aren’t good!!
• one thing I have no idea about is how long I’m likely to wait from tomorrow’s appointment to going into hospital!!

I also know, after 20+ years working in the NHS and allied services, that they don’t usually arrange procedures that entail up to 5 days in hospital unless there are no less complex alternatives - especially in a post Covid NHS.

In preparation for tomorrow’s appointment I’ve written down a number of questions I would like the answer to (though a couple I doubt they’ll have an answer to a couple before they do the procedure!) just to give me something proactive to work towards while I’m waiting.

I’m sorry it’s become a very long read; however I’m making use of the relative anonymity of MN to unload my journey because I’ve told barely anyone in real like (sister, mother in law, adult step daughter (she lives in London, a couple of friends) so it’s not that easy to discuss with my family & friends!

Latest update is, following on from constant appointment he believes that the most likely diagnosis is a benign fatty lipoma but the site of the mass is atypical and there is a line running across it which is also atypical of a lipoma but could be indicative of a soft tissue sarcoma. He said he was happy to be led by my choice of 3 options

1. do nothing and scan in 3-6 months to see what it’s doing
2. attempt a needle biopsy
3. remove the mass in a marginal resection and send the whole thing to histology

In his opinion

1. may show a slow growing mass that has changed little - or it may have increased in size and start causing issues
2. they may get ‘normal’ cells and be reassured but, if there are cancerous cells in the mass a needle biopsy could miss them
3. by removing the mass it could either come back benign in which case I’d be followed up for 5 years for regrowth or new growths or, if it came back with cancer cells (or even pre cancerous changes) then they would be better placed to move forward with more radical resection and referral to the oncologists.

We agreed that option 3 really is the only way to go to be certain of what we’re dealing with so he’s added me to his waiting list and surgery should happen in the next 3-4 weeks. So now I’m waiting for the pre-op assessment team to contact me and his secretary/admissions to call with a date for surgery sometime later this month.

Yesterday I got another call to say my case has now been discussed in the plastic surgery MDT and a different plastic surgeon to the one I was originally told would be involved might be taking on my case. He has picked up that I’ve not had any lung function tests done so they are now being arranged urgently and will be done as soon as they can fit me in.

I still feel like this is a whirlwind and I move forward 2 steps then backwards 1; get told it’s ‘probably’ nothing and can wait but a different person has a different perspective and it’s suddenly all urgent again!!

OP don't have experience of your particular condition but over the past year I've been treated for breast cancer and am now undergoing some investigations in another part of my body.

The uncertainty is so destabilising, isn't it? I found the frequent changes in advice/ decision really hard. For one thing, when you have a young family you want to be able to plan and keep as much control over your life as possible but also you really want to believe that all the doctors know exactly what they are doing. Despite a bit of goal post moving, I concluded that my team did know what they were doing and was grateful that different members of the MDT had different perspectives, even if it did mean the plan changed. But I can't pretend it's not really hard to not have that total certainty at least about the protocol, when you have so much else to worry about.

I'm not sure my ramble is any help but I just wanted you to know you are not alone in the way you are feeling.

I am sorry you are going through this. The surgeons advice seems considered and thoughtful. I always have liked a doctor who sets out the options and brings you in on the decision making. I will keep my fingers crossed for you and I would suggest that you do share the info with someone in RL who will be supportive.

I am going to guess that you will need to set up at least a week of potential childcare in case they do a resection in the surgery. I would also be making sure the house is stocked with toilet paper and other supplies and freezing lots of batch cooked meals so that the weeks after your surgery are as easy as possible.

Thank you for your post, it does help hearing of similar experiences through a different speciality!!

I do trust the Drs are making the right decisions and understand that, as different members of the team get brought in either for an opinion or because they happen to be in a meeting, that plans change to accommodate it. I know part of the 2 week wait between being discussed in the MDT and the most recent appointment was because they were trying to coordinate the 2 surgeons but couldn’t get them both at the same time so booked me in with the thoracic chap as he will do the first procedure - the nurse specialist said I’ll probably not see plastics till I’m in hospital now. And the nurse that called on Friday said this other plastic surgeon might be taking my case on so I’m presuming the person mentioned first is unavailable for some reason.

I’m going to call the hospital tomorrow to speak to the nurse and get the name of the other plastic surgeon (as I simply can’t remember it!) and see if she knows about this extra step in the process.

Thank you for this post. I was impressed that the surgeon this week laid it all out as 3 separate pathways and that whatever happens is totally my choice - even if it’s not in line with his recommendation of the 3 options. Not that I wasn’t going to agree with his recommendation - I’d rather find they’ve been over cautious and it’s just a fatty lump than go for a ‘wait & watch’ option only to find later that it needs more extensive treatment!! Regarding doing the more radical resection, the surgeon said they would wait for the results of the marginal biopsy and have a discussion with me in clinic before going on to anything more major, so I’m hoping that remains the case but guess they might consent me for the more radical operation as an ‘if necessary’ option.

I have spoken with the closer of my DSis’s (I have 2 but the other one is rather fond of the drama llama life and, if you’ve broken a nail, she’s broken her neck; even when she did have something happen to her, over the years it has gone from a faint and a banged head at work to loss of consciousness, dislocated shoulder where they dragged out of the way of them working, and fractured skull - so she’s not the sort of person you tell about serious stuff as it all becomes about her!!) and she knows exactly what’s going on and has said, if she can make it work round her own family, she will come down to help out with the children. If she can’t, my MiL has also said she will come to help DH with the children - he will take time off work but we’re hoping that the operation will happen when he’s got 2 weeks leave already booked, or he will try and change the dates of his leave to be off.

I will definitely be preplanning the shopping and filling the freezer and cupboards with easy to cook stuff as well as basic staples such as bread, milk etc as DH doesn’t drive and the nearest shop isn’t really walking distance especially if he takes the children with him!! I also need to make contingency plans for preschool as I’ve been told I likely won’t be able to drive for 4 weeks afterwards and, having looked into taxi’s when my car was off the road recently, it’s unaffordable at £20 round trip and we’d need 2 round trips a day, 3 days a week 😱😱 Time to get the lists out and see if I can beg for favours from anyone!!

Im glad you are getting the planning done. In terms of them deciding on a radical resection or not, you might want to ask of they analyse the biopsy while you are on the table (so to speak) and then move forward with it based on the rapid results. Or if they will come out and go back in later. In my experience, once you are in surgery (with all the risks it entails) they like to do the whole job so you dont have to have another surgery at a later date if possible. If you don’t want that to happen and want to opportunity to decide on progress on the basis of the biopsy yourself, you should be CRYSTAL clear with the surgeon before your biopsy.

Thank you for this @SeaToSki; I will make sure to ask this when they do the consent form. The surgeon I saw last week did say they would have further discussions with me once the results were back and before they made any plans for more radical surgery but it doesn’t hurt to get clarification.

I called the nurse specialist this morning (she said 8.30am is usually a good time to catch her in the office!) and she said she thinks it may not be a plastic surgeon who mentioned about needing lung function tests but one of the other cardio thoracic surgeons. She also believes I’ve been put on an open list for the biopsy so that I get it done by the first consultant to have space on their theatre lists. She’s going to make some calls today and will get back to me this afternoon.

Had my pre-op assessment last Friday and going in for surgery this Friday to remove the mass. Surgeon has said to expect to be in 5 days post surgery and that it’s only occasionally that he discharged patients before that time.

He warned me I will have probably 2 chest drains in, a catheter into the area for pain management and a PCA to start with. I was also told I’ll have visits from the physio, starting with breathing exercises and moving on to actual exercises after a day or so. Worst part for us is no driving for 4-6 weeks depending on recovery - DH doesn’t drive and local public transport isn’t great so we’ll be pretty isolated until given the all clear to drive again.

Case is packed apart from usual medications and iPad; have bought extra paracetamol and ibuprofen for once I’m home though I’m hoping they'll give me something a little stronger for when I’m first home. Shopping is ordered on a click & collect order for tomorrow afternoon plus I’ve a little time in case anything isn’t available and I have to go into the supermarket. I‘m on MRSA suppression therapy of Hibiscrub shower/hair wash and bactroban ointment daily from yesterday (Wednesday) for 5 days - they’ve given the most ridiculously small 3G tube of ointment for 3x a day application to both nostrils so we’ll wait to see if they need to prescribe another. I’ve to do a Covid swab in the afternoon (no proof needed just to confirm it’s been done!)

Good luck, I will keep my fingers crossed for you that its an easy excision and the all clear.

Do you have anyone to come in and advocate for you post surgery/bring you snacks and drinks? It seems that NHS wards right now are somewhat lacking in nurses

My sister is staying with us (DH doesn’t drive and we live an hour by car from the hospital) so she can either bring him and twins to visit me or come over by herself. I’ve packed a bottle of old school orange barley water, large water bottle and a couple of 500ml bottles of soft drink.

Our hospital are pretty good about coming round with a drinks trolley every 2-3 hours and always have fruit/cakes/biscuits available on there (manned by housekeeping department to give nursing staff one less job to do!) plus they have ‘lunch packs’ always available
via the ward kitchens.

Cant believe that, the only day the alarm is set (for an ungodly 4.45am), I’ve been awake since before 2am and can’t even make a cup of tea 😭😭 I guess I’ll be ready for that anaesthetic sleep later on this morning!!

How did it all go? Just checking in

Thank you for asking @SeaToSki;

Surgery went well thanks; was in theatres about 4 1/2 hours and out of recovery after 7 1/2.
today they removed the PCA, chest drain and local anaesthetic infusion but I still have a catheter in as I’m not really mobile yet. Should be seen by surgeon tomorrow with plan for home sometime this week.
Now for a 2-4 week wait for results of biopsy and any forward plan.

So glad, thanks for updating. I hope you are able to sleep, eat and recover well and your biopsy is clear.