What was the best advice you received about your cancer.

[Denzie]

Some people step right up and let you know things they think you should be aware of. Some of it's good, some of it's bad. I'd love be to hear about the best help you had.

[Yojimbo52]

The people I learned the most from were the people who did stuff. They showed up, cut the lawn, dropped off fruit, or whatever - but they showed up. They didn’t ask permission, or ask what I needed , they just came by and did things that seemed obvious.

See, to me, that made accepting the help easier. I tend not to ask for help, and when people would ask if I needed anything, my response was usually no, that I had everything in control. But I needed help, had nothing under control, and hadn’t a clue how to articulate how they could help.

I learned a lot from those folks that just showed up, and I do my damndest to be like them when I see someone in need. No opinions, recommendations, special diets, or judgment. Just some fruit, maybe an ear to listen, or a hand to hold. It doesn’t sound like much, but it meant the world to me.

[Denzie Moderator Volunteer in reply to Yojimbo52]

Beautiful. The kind of love and respect you were shown and your insight brought tears to my eyes. (Never happened here before).

[JanetteR57]

When my consultant (surgeon) said to me that recovery after my thoracotomy (upper left lobectomy) was up to me - if I kept active, the remaining lung would re inflate and develop (not quite to fill the space) like a balloon but if I sat/lay around, it would not be so good, it felt empowering and motivating.

It helped me get up each day, walk a few steps then a few more, then down the road, then round the park.... little and often then picked up my swimming a few months later. That started off painfully - he said I should have gone back sooner but hadn't realised I could have phoned to ask advice on something like this rather than waiting for my next appointment 3 months later - but again, built it up by a few more lengths each time until I way exceeded my former 130 lengths several times a week.

Keeping active also helped me recover mentally - giving me space to think and work things through but I'm also pleased I sought counselling as it helped me discuss so many life aspects that others didn't understand. Seeking help has never been my strong point either but this was so useful, I suggest it to others too.

[kri312 in reply to JanetteR57]

Janette - going for surgery 10/18. Had R LL lobectomy and R UL wedge 5 1/2 years ago and there is a small spot in R UL that lit up ( with a small GGO rigth on old suture line) slightly on 2 recent PET scans, bronch inconclusive. Tumor board recently reviewed all my scans and recommended removal. My surgeon who I love said he won't know until he goes in what he is dealing with (still not consinved it is malignant). He said ideally segment removal, possibly wedge or entire upper lobe (said leaving middle lobe only is challenging) or worst case scenario full R lobe via thoracotomy. VATS recovery last time was not difficult other than inital pneumothorax and persistant cough - curious how your recovery was and what life is like with just one lobe? TIA

[JanetteR57 in reply to kri312]

my surgeon also said he didn't want to waste time on a biopsy. it had taken 5 weeks from emergency admission following A&E attendance the day before when a 'lesion' on left lung showed on a chest x-ray but misdiagnosed as uncontrolled asthma and kept in for a week - non responsive to asthma meds by then coughing too much to lie still for a CT.

CT Appointment made for 2 weeks later but scanner broke and had to order parts. tried to rearrange scan for different hospital site - only consultant could move appointment who was on 2 weeks' holiday - you get the picture. A week after CT told results meant my 'case' would be discussed by MDT a few days later and somebody would be in touch. Invited for PET after MDT discussion then a few days later, letter to see surgeon 2 weeks after that. However a week after PET, phoned by surgeon's secretary to go to a different hospital (tertiary centre) as our local hospital didn't do surgery (surgeon visited every fortnight for outpatient clinics) first thing the next day where I met the surgeon. He said as it had been found the previous month, they liked to act quickly - when I pointed out it had been a whole month before that when it had been found in A&E in a different hospital Trust, he was appalled and he said he wasn't going to waste time with a biopsy as whatever it was, it needed to come out with half left lung then sent away to determine what it was and any follow on treatment. Surgery was 16/12/10 and didn't learn until 13/1/11 that it had been a 7cm adenocarcinoma (NSCLC). Lots of waiting but very thankful once Involved in lung cancer research that I'd had the chance of surgery as majority detected too late in the UK for that to be an option.

My surgery was thoracotomy -VATS didn't exist . The left lung has 2 lobes and the right lung has 3 (the heart takes up space which is the reason for the difference). I was admitted on 16/12 and discharged 22/12 but nowadays most are keyhole surgeries so fewer nights in hospital.

As you've already lost a third of your lung and a wedge from another lobe, probably why he'd prefer to take another segment although lobe removal is 'standard'. There are many patients now increasingly in Europe having sub-lobar/wedge resections to reduce impact on breathing. That varies from person to person - some can cope with removal of the whole lung (pneumonectomy) which used to be standard treatment for TB but for those whose respiratory fitness already compromised they tend to be more conservative or increasingly in UK use SABR (RT ablation) for older/less fit patients.

I was fit and active pre surgery - swimming 2-3 times a week 130 x 25m lengths also a never smoker so main lung damage from repeated infections since having had tonsils removed before I was 4 and childhood asthma/hayfever/allergies. I'd had no further surgery since so had no expectations or fears about recovery which was probably a good thing.

I started post surgery recovery with gentle walking around house/garden/street then local park , increasing it a little every trip. I didn't return to swimming until end of March 2011 having only gone night before and morning of surgery since October A&E episode. That was tough but persevered swam on my back, sculling arms at the side for several lengths and rebuilt fitness including front crawl/freestyle. By time I saw surgeon end of June I was back to my 130 lengths. I raised funds for Roy Castle lung cancer charity for several years with my swimming in memory of a dear friend and recover my lung fitness. I built up to distances I could only have dreamt of before - including one 5.25 hour swim of 360 lengths by going regularly and my breathing benefitted immensely (and mental health). 980 miles swum 2012 and 989 in 2013! 1 mile = 64 lengths.

I still had some difficulties climbing stairs, inclines especially if carrying a bag or trying to talk and walk but continued working, swimming and travelling since.

Initial recovery was good. quickly put into annual check although maybe too quick as had some more investigations in 2012. Thankfully inflammation at surgical stump site when inspected during bronchoscopy - recovered fitness for work, swimming and everyday life.

Between 2015 and 2019 had some nasty chest infections that hospitalised me annually (pneumonia, RSV and pseudomonas) - each one reduced fitness and pandemic resulting in pool closure reduced it further. A run of chest infections this winter left me more breathless but still thankful for every day.

I recently attended a workshop for researchers in Europe and a colleague had a pneumonectomy some years ago and we were both swimming and comparing notes!

I was curious as a recent additional comment in Roy Castle foundation's helpful surgery booklet mentioned potential issues with swimming if a whole lung removed but he'd had no problems at all. This booklet was originally compiled by local surgical centre then adopted by the charity and regularly updated (including recently) and I've been part of the patient literature review panel so happy to recommend it. I wish such guidance had been around when I had my surgery. Good luck with yours. roycastle.org/app/uploads/2...

[kri312 in reply to JanetteR57]

You have been through alot for sure but sound like you are doing well. I had a broch in June that showed a few atypical cells but insignificant for diagnosis. He is still not conviced it is a recurrance - have had covid 2x but regardless he needs to get in a determine the best plan of action. Thankfully it is eaiser to get CT/PET and broch here - he did say whatever it is it is early and very small..... long 3 1/2 weeks of waiting is the worst part because he is on vacation for 2 weeks!

[kri312 in reply to kri312]

So home and recovering. Been a little bit of a roller coaster. Woke up from surgery with my husband/surgeon saying it was benign- tested in OR! He did remove 1/2 of the remaining upper lobe. Was the best news ever!!!. Of course he needed to send to path. Long hosp stay as unresolved pmeumothorax/air leak. Switched me to heimlich valve day 5 and went home day 6. Called me later on day 6 to say path came back positive. Was shocked! Feel so many emotions - still have heimlick valve and now dealing with this change of news. Funny because going in I was convinved it was back and then when I heard benign I have now switched to almost a state of shock! He said it might be new primary and not recurrance of original - not sure if that is a good thing or bad- he said good but not sure how/why. Mulitple CT, PET and broch and even OR frozen sample couldn''t definitely diagnose this over the past year and then boom- postive! See him tomorrow to hopefully get the tube out and then next steps. Almost wish he took the entire lung in case anything else is in there......how long ago was yours? No issues with your remaining lung on scans?

DIAGNOSIS(ES):

A. Lymph node, level 10, biopsy:

No carcinoma identified in 1 lymph node (0/1).

B. Lung, apical right upper lobe, segmentectomy:

Invasive adenocarcinoma, acinar predominant.

No carcinoma identified at the surgical margin.

Sections demonstrate an invasive adenocarcinoma that stains with TTF-1/Napsin-A (dual stain), consistent with a lung origin. This is staged as a new primary. However, this may represent either a recurrence or new primary (history of two adenocarcinomas in 2018). Molecular studies have been ordered for defi

nitive characterization. Representative slides of the prior adenocarcinomas (SP18-10501) were reviewed; these show a significant lepidic component, which is not present in the current adenocarcinoma.

[Denzie Moderator Volunteer in reply to kri312]

That's enough to trigger a PTSD episode!

The good news is the lepidic nature of that finding. They reason they suspect that is a new cancer rather than a mets or reoccurrence is because of it's slow growing nature. And it is an adenocarcinoma different in that nature from the previous adenocarcinoma.

Please let us know what you learn about follow up or treatments.

[kri312 in reply to Denzie]

I’m not following. First one was lepidic and this one is acinar/papaillary. My understanding is lepidic is the better one to have ! I would prefer none

[Denzie Moderator Volunteer in reply to kri312]

My bad. I misunderstood. I thought this one was lepidic. Sorry to cause any confusion.

[kri312 in reply to Denzie]

Yea I am aware acinar is not as good

[Bella_Tiger in reply to kri312]

I'm so sorry to hear about the positive pathology report--just when you had been able to take a breath! I had a similar but happier experience--surgery to remove the top left lobe because of a 4mm tumor that was positive for adenocarcinoma. I did chemo therapy and a year of immunotherapy. Just as I finished immunotherapy, scans revealed a metabolically active nodule right on the incision line from the surgery. For some reason, I didn't think it was a recurrence but both my oncologist and surgeon were pretty convinced it was. So they removed the middle lobe on my left lung and now I have one lobe left on that side. It was robotic surgery, I was up and walking the same day and went home the next day and back to walking an hour every morning on the beach. I was shocked to get the pathology report saying there was no malignancy, just an encapsulated infection. I admit that part of me felt like 'well, heck, there goes a perfectly workable middle lobe' but the reality is that the only way to know was for them to do the surgery. It's a relief to know it wasn't a recurrence or new cancer. It feels as if it has been pretty easy to recover from the surgery and I don't have any trouble breathing, as long as I keep active and at the same time don't overdo it. I just build back slowly and after about 6 weeks I'm pretty good to go--just a few minor glitches (a bit of rash here, a little pulling in torso near the main incision--nothing to complain about. I wish you the best possible outcome and lots of courage and fierceness in the face of this new diagnosis. And lots of love from everyone here, starting with me.

[kri312 in reply to Bella_Tiger]

That is an amazing feeling ( I had it for 6 days)! How do you feel with just one lobe now? I am still struggling with chest tube at home due to pneumothorax and PAL. It has been 11 days - once I get the tube out I will feel better! Can I ask why you had chemo and immuno for a year with such a small tumor? I assume that was stage 1. I asked to have a meeting with chemo/onco which is next week even though he said I was not a candidate due to size/stage. How long was your chemo? Do you know what type your original adenocarcinoma was? Thank you for your well wishes - mental recovery is always the hard part.

[Denzie Moderator Volunteer]

Also beautiful, Jeanette. Your surgeon helped lay the foundation for you to blossom into the advocate you've become. And you had the self awareness to understand how to take his suggestion and make this recovery happen for yourself.