Hello everyone. I am new to this wonderful site and have a question. I was diagnosed with adrenocarcinoma Stage 2a, N1 , MO about a month ago and was immediately told I was suitable for surgery. After CT/PET they said I would have surgery with Adjuvant chemotherapy with "curative intent" .They thought the tumour was about 2.5 cm and the PET/CT showed activity in2-3 lymph nodes .
I had a lower left LOBECTOMY plus removal of about 14 lymphs two weeks ago. I was told that each "lymph station/site" contains a "string" of lymph nodes - like 2-7 and that they removed from 14 sites. I'm told the operation went really well with very good margins etc (whatever that means) The tests/analysis afterwards on the nodes/glands were all completly clear. A huge surprise for me and even the doctor said he was slightly surprised although the surgeon said he was not . and so I was "regraded" to T2A, NO, MO. I have now been told that this it is. I will be very closely monitored for 5 years etc but I will NOT be having chemotherapy. Of course I am on one hand delighted but the other bit of me is worried. I know the criteria with my set of circumstances is that if the tumour had been bigger than 4cm I would have ticked the box for automatic adjuvant chemo. Mine is just under 3.8 (like 3.78) so there decided no. I still get to have a meeting with the oncologist who was part of this decision at the MDT so that he can discuss this (positive?) change of plan face to face. I am so relieved that they are so positive but I am still so worried that I should be having chemo adjuvant to give me the best possible shot of it not coming back (I have already been told that whilst they are going for "cure" of course sometimes it does reappear but that they will be monitoring. This is a top London Hospital Cancer centre by the way. What do you think?
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I had stage 2b nscl etc. lung cancer and had part of the left lobe removed by op. Mine was about 3 cm and I was told to have adjuvant chemo to be on the safe side. This was 2012 and first lot of chemo I didn't get on with. The following year we tried a different concoction and at a smaller dose 80% and that was fine. If they all agree at the MDT you don't need to have it that's great. All I would say is to your next meeting with your ONC . ask if you should have a brain scan as mine went to my brain but nearly 5 years later my chest is still clear and I have had a brain op and stereotactic surgery and swim 10 lengths at the pool and feel fantastic. I had a CT and MRI last week and awaiting results. You can look up my thread on here under Hoggy.
Let me know if you have any treatments or what they decide.
Thank you so much Hoggy for taking the time to reply. I realise I sound a bit selfish when it could be so much worse and people are so brave and supportive on here .but I am only learning as I go and it's all been very fast and I'm just learning the difference between hopeful news and less good. They did an MRI of the Brain just before the lobectomy and it was clear. They said they would do VATS but convert to open surgery if they felt it was needed. Then just before the surgery he told me that it would be open only. That was fine by me but I am just a bit surprised how two weeks post surgery I am taking a LOT of pain medication - two days ago I had a great day and today the medication just isn't touching it. I was worried because they said the adjuvant chemo had to start six weeks after the surgery but now with no chemo I feel I can try to heal at a slightly slower pace. I'm walking twice per day for about 30-45 mins slowly and feel it's doing good. They said the type I have is the least aggressive But im still worried that by the time I have my first review CT in two months it will have reappeared. Its interesting that you had adjuvant with a 3cm tumour but I think you said you had part of a love removed where's I know they took the full love with me. maybe that explains the difference - I just don't know. I also have pain now In a few different places in my body but have been told that this often happens after a big surgery. Anyway, your post has given me great hope. Thank you - I'm going to figure out how to get your thread now.
I am currently in hospital in Birningham having just had similar surgery to you- hoping for Vats but ending up with open surgery. Only day four - still in a lot of pain but assume this is normal. My surgeon saying same things as yours- slow growing non aggressive cancer which he believes oncologists won't want to treat yet. He says the cancer becomes resistant to chemo after 18 months so they don't want to use it until it's really necessary. Haven't seen oncologist yet or got results from the tumour biopsies so this may yet change.
I feel like you, pleased on the one hand and concerned too- really would like to avoid chemo especially as feeling feeble at present but on other hand would it be sensible to have a mopping up dose- and further scans line bone and brain which don't show on PET scan I believe?
I am very fortunate not to have aggressive cancer when so many have much worse prognosis but wondering if should get second opinion from another oncologist re chemo? Results of biopsy may determine my fate anyway but I do sympathise with your concerns. You sound very active tho- 30-40 mins twice daily is great progress and that will be my aim once I get out of the hospital!
Such a steep learning curve when we have this new reality of a cancer diagnosis, daunting and so much uncertainty which a control freak like me doesn't like! Will be interested to hear your progress as we are at similar stages with similar prognosis it seems- good luck!
Hi Jane, How lovely very of you to reply and it could be good to talk given we are at similar stages in this journey I think - although I know no two cancer journeys are the same . I had CT Biopsy before the surgery which is what confirmed the Adrenocarcinoma stage 2a - size after biopsy believed to be 2.9. It was only after surgery they said 3.78 as it is "3D" of course where scans are not. It is this closeness to 4cm that worries me. I am NOT in a rush to get Chemo but I am in a rush to get any,thing that increases the odds at all! I can see why they might want to "hold it in the bag" but not if it means something is going to pop up in the next 8 weeks. However they have of course thoroughly examined the tumour and lymphs post surgery so...I think I have to have that face-face meeting with the Oncologist ASAP - maybe I will understand better. I know exactly what you mean about second opinion - that's what I am feeling. But it seems to be too weird to ask for a second opinion on what is essentially good news when most ask for second opinions on bad news. On the surgery I am trying to be a bit active but pace it too. Today I am still in bed at 3.00 pm for example - I just feel the need for an easy day as I had a fair amount of pain yesterday so it will only be one very slow walk today. I expected the post surgery to be tricky and to be honest it is , but would still say to everyone "go for it immediately" if it is suggested as my breathing etc is good and improving daily which was one of my worries. I am doing nothing for anyone else at all since I came out of hospital - zero (!!) because that is what my leaflets said. In fact my husband has been amazing and I have had family members sit with me when he's had to work but getting more confident now. It is a big surgery and I am impressed by those who bounce back so quickly but am trying to measure my progress on a weekly basis rather than a daily basis because then I can see the difference after a week rather than being put off by one less than good day. Good luck with your recovery - do you know when you are coming home ? I hung on for an extra day and came home on morning of day nine so 8 nights in hospital. Just wanted to get as much rest as possible. have also tried to eat lots to try to put on a few kilos (I hadn't lost weight) so that when I started chemo if I lost weight I would still be stronger iykwim. Now that chemo is not planned however I am still eating cos I figure we need some reserves etc! (Good excuse for piles of nice things). take care x
My husband had a lobectomy in April 2012 and was staged at 2a ...he didn't have chemo either and we were very concerned about this at the time. However, happily it appears the advice we received ( that potentially the chemo would cause more harm than good , and that the tumour had been fully excised) seems to have been very good as he has not had a reoccurrence.
Hi, I had an upper left lobectomy in Jan 2013 and was also told initially that I would be having chemo after the op but then the oncologist said 'no', wouldn't be having it as I wasn't well enough at the time and it could do more damage than good. I was really worried about it to begin with (while at the same time being relieved I wasn't having it), but have gradually became less worried as time has gone on. Almost 4 years since then and thankfully still going strong and - despite a couple of scares along the way - no re-occurrence. Hope your paths in the future see you living the lives you want to live ☺x
I had the same surgery with no follow-up chemo and remained clear for a year and a half. Then a scan picked up involved chest nodes which resulted in 35 doses of radiation and 8 doses of chemo. I have been clear again for six months. Frankly, I'm beginning to believe that some cancers become chronic diseases and thus become treatment management issues. They still speak of cure but I am skeptical.
I was in an almost identical position to you 3 months ago. The difference was that I had been on a clinical trial using afatanib to shrink the tumour prior to surgery (ABLE trial). After surgery the surgeon was gobsmacked as tumour 38mm across and n0m0- he was expecting it to be much bigger. I was told no adjuvant chemo after the mdt having been prepared for it all along. Prior to being on ABLE trial tumour estimated to be 5 cm and so because it was over 4cm I questioned the MDT decision. In my case I had to push to see oncologist who then advised should be offered chemo. I'm halfway through now with 2 more cycles to go. In your case you'll be borderline as it is under 4cm but really pleased they are at least seeing you to discuss mdt results and why not advising chemo. I think it's really hard when decision based on 2mm difference. Take all your questions to the oncologist though and best of luck with everything x
Hi ,I am Diane,
I seem to have a reverse story to yours I had a upper right lobectomy in March 2015 for adenocarcinoma with curative intent .I was told I was PT2 N2 Mx and was advised to have adjuvant chemo ,I really was not happy to have this ,as it was a surprise to me that I should need it ,so sort of the other way around .Recovering from these operations takes time and the thought of chemo after it floored me .I definitely didn't want it but had 3 cycles in the end it was the sensible thing to do considering the facts of my operation which revealed more cancer aspects than first thought .Side effects of chemo are still around but diminishing slightly.
The point is you still have a discussion with an oncologist to go and perhaps she can fully explain why they do not wish to offer chemo or maybe it is not completely ruled out, there maybe choices ,concentrate on the details of the moment eat well exercise and recover from the trauma you have currently just endured. Do the details when feeling stronger .
A good note from me ,I am now feeling a whole lot better from everything ,life has less worry and more colour things are looking up .For a while the shock of diagnosis just totally absorbed me ,as it does all of us. Good luck and hope you start to feel better soon .
It is really good news that the nodes and glands are all clear.I would discuss your concerns with your oncologist at your next visit. He /She will advise you why they came to the decision not to have chemo.Write down any questions you want to ask.They have your best interests at heart. A decision on your management was made by a MDT in a specialist centre who treat lots of people with similar problems.Be guided by their expertise.
I am home now- since Monday. Still got quite a lot of pain, finding it hard to get comfortable at night- sitting up, half up, lying down etc. Look like I've been in a fight with a hedge by morning! Any tips re this gratefully received . Surgeon says may have pain for 3-6 months and sometimes there is residual nerve damage but I will take that if it's the only issue.
I too have a list of questions for the oncologist who I am seeing on Oct 27th. Also concerned about spread and not yet had brain or bone scan so that's something for discussion. But equally I don't want chemo unless it's necessary since it seems to have a limited effect. My cancer is a rare one caked Lepidic adenocarcinoma and my prognosis depends on which type of lepidic cancer it is- 2 main sorts apparently- good prognosis for one as in plus 5 years, less for the other sort. I won't know which until see the oncologist at end of October although surgeon still quite upbeat. Only discovered this last night after seeing him again.. Surgeon says he's not had much experience of this rare type of cancer and oncologist will know more. He has been brilliant tho- informative and friendly and my lung X-ray is looking very good apparently.
I suppose we have to find a way of living with this- and not lose the joy in living by being scared of dying all the time. Easier said than done- think I may need some counselling to accomplish this. If you have a Maggie's centre near you they are great with the emotional stuff relating to a cancer diagnosis I'm told. I will be visiting the centre near me once I am able to drive again or my partner will drive me when he's not at work. It's a scary new reality but we are are all mortal, just not ready to shuffle off this mortal coil just yet thank you!
I found sleeping in an upright position helped I managed this with a rolled up single duvet as the base and by putting at least four pillows building a little hill of comfort to sleep with support. I found it worked a treat and night time pain killers did the rest try it out .
Best wishes recovery is tough so be kind to yourself .
HI again - thank you Jaynair, Jackie, Diane, Alice and 906 for also replying. ALso the direct reply from the Roy Castle helpline - what an amazing group to take time out amongst your own problems and concerns. THe good news stories have really helped. I am going to chase the oncologist date this week and go through everything with him as suggested. Janie I am figuring out if I can email direct on this forum so if I can look out for something from me in the next hour X if not I will post here.
Hello all! THought I'd update you that I have now seen the Oncologist and they have said that they won't be doing chemotherapy or radiotherapy with me, as their research says that with my size tumour, now removed , and no spread to lymphs, this is th best course and they will be re- scanning in early December too. I think I am satisfied enough with that decision - I just didn't want to have to take that decision myself. May have to have some fluid drained off next week in tha meantime so will see whether that happens and if so how it goes. WIll be monitored regularly after that - CT scans six monthly and an MRI after 3. THis sound about right? X
Hello there. Have just noted your last post and because my case is similar to yours I would be grateful if you can let me know the exact follow up scans and x rays, their type ie part of anatomy, and frequency that will be your schedule for the next two years. I am interested as my surgeon and local hospital physician differ in their opinions. Thank you for taking the time to read this and look forward to hearing from you.
Hi , first I should say that I am STage 1b not 2a as I originally thought ( the tumour was classified as 2a which confused me but as the rest is 0 overall it is 1b). I had a chest exray plus a cat scan of neck/chest stomach and, I think, pelvis plus bloods. This was in December and was all clear thankfully and this was 3 months after my lobectomy. In March I have more bloods and another X-ray. I a, told that although my original tumourmdid not even show up on an X-ray this is different as they will be comparing two X-rays to see if there are any differences/changes. 3 months after that i.e. June I am scheduled for bloods plus another CT, then September xrays, December 2017 CT. Somewhere in here I will have to have an MRI of the brain. ONcologist said in 9 months i.e. September but I want it earlier i.e. This June because that will be 9 months after the first one which wasmdone just before my surgery in September. I am not waiting until next September for this - one way or another I'll make it happen. My surgeon and oncologist work closely and appear to know each other very well but I still sense that they slightly have different opinions on how often certain scans should be done. In this case I think my surgeon is more interested in squeezing the timings slightly and checking just dpsay every 5 months or so. HAvent test d that yet but may go back to see him for support on the MRI issue etc. Hope this helps.
To add to this I think, but am not certain, that this is the plan for the next two years. The CT of my neck was done for other reasons so I don't know if they would normally do this.
Hi, I had upper left Lobectomy a week ago, mine measured 4cm.I was told I didn't need chemotherapy. I also have a small area on lower left lobe, which I think they are going to give me radiotherapy. I have appointment in 3 weeks for follow up so hopefully they will tell me then. Can I ask how you are coping with the pain, and how long was it before you reduced the medication. Thanks and hope you are on the mend.
kenzie123, well done on your surgery - not many patients are able to have this. I had a left upper lobectomy in Dec 2010 and a 7cm adenocarcinoma removed. I did not have chemotherapy. Much more is known now about lung cancer and every case is judged on its pathological/biological results as well as the health of the patient and any other factors that may impact. In the last year or so immunotherapy has become available much earlier than before (it used to be kept until other treatment modes had been given but now in some cases where pdl1 expression is within the guidelines, given up front. This means that the tumour cells are giving off a specific protein signal. Don't worry about the science, - clinicians in the UK have to follow strict guidelines and evidence and there is evidence that for some of us, chemo would not be in best interest as there is evidence in some cases, that living with the side effects of chemo for no clinical benefit would be much worse. They take an oath to 'first do no harm' so when trials/evidence proves there is no/little benefit, the guidelines tend to be updated to change to newer treatments or consider alternatives rather than the old approach of blasting every patient with harsh chemotherapy or radiotherapy. I would also add that the 'blends' of chemotherapy/radiotherapy have also changed considerably in recent years due to understanding much more about specific tumour mutations or characteristics that have made survival statistics much better coupled with changes to lung surgery. There is a lot of plain English information about expected recovery times/activities/exercises available on the Roy Castle lung cancer site under 'information', 'lung cancer treatments' 'surgery' then 'my lung surgery book'. This was compiled by our local tertiary centre, Heartlands in Birmingham with Roy Castle and is regularly updated and reviewed by a patient panel. People recover at different rates - personally I stopped the pain medication too soon due to an allergic reaction to morphine and believing I might become addicted to the oral painkillers, the constipation they caused or they might trigger asthma. I was advised to take them again along with paracetamol so that the two different types of agents would act in a different way to control the pain. A nurse at a walk in centre was a pain management specialist and gave me excellent advice. Keep moving/active to redevelop the lobe - gentle walking around the house/garden/street if you can. It will improve and the pain/breathlessness will improve. I was back at work within 3 months and swimming. good luck with your recovery.
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