Why more surgery?

Hi perplexed. 

It does sound radical indeed but if it gets into your nodes and travels somewhere else what then?

Maybe a second opinion would be helpful?

Have you asked about trials or immunotherapy? I wouldn't know if they're appropriate for you but why not ask the question?

I'm only at third round chemo and possible surgery at some point followed by more. 

Wish you well. Best regards.

Geo.

Hi …Sorry to hear you find yourself in this situation…My husband is now 65 ..He had a cancerous tumour in the junction between his oesophagus and stomach…After four chemo cycles in Sept and October ‘22  he went through oesophagectomy  surgery in December when he was 64 …Although he had no complications during or after surgery his  recovery has been slow but steady (he’s about 90% recovered ) and the lifestyle changes have been just that ..‘life changing ‘ ..It is  actually the chemotherapy both pre and post surgery which has  caused him more problems in the long term and he’s still dealing with some issues it’s left him with …He has said since if he could’ve swerved the chemo  he feels he would’ve recovered quicker and adjusted more easily ..We were told post surgery everything looked positive and there was no sign of cancer cells in any of the lymph nodes or surrounding tissue which was removed during his oesophagectomy but he hasn’t been given the all clear or been told he’s in remission to date …We were just told that the first two stages had worked well in treating the cancer and the adjuvant chemo he had would go a long way in reducing the risk of a future recurrence ..So we’ve been left in limbo really .(.or is it just the definitive words we need to hear and have  misinterpreted what we’ve been told ?)  ..We are meeting with his surgical team on Monday though and I’m going to ask what the status of his situation is now ….This will be the first follow up appointment he’s had since his treatment ended ..which in my opinion isn’t acceptable as we were told he would have four three monthly monitoring check ups in the first year ..obviously that hasn’t happened as it’s almost seven months since he had his surgery! 

You are only young and it’s a big decision to make ..I would suggest asking for more information from your surgeon and discussing it in greater detail as it does seem to be a radical surgery for someone with such a low risk of a recurrence…although   any risk no matter how small in situations like this needs addressing doesn’t it ? ..I would be asking could it be explained in greater detail why your surgeon thinks it’s an ‘Unacceptable risk ‘? and are there any alternative methods of treatment worth looking into  to reduce or eliminate that risk .

Hope you receive your answers and Good Luck

regards J 

Hi Perplexed

Sorry to hear you are in the situation you are.  When found my tumour was at T3 so not having surgery was not an option indeed, it was made clear I was lucky surgery was an option as the alternative was palliative care.

I was diagnosed last June at age 49 and started chemo in the July having the op in October and more chemo stating Feb this year. 

It has been really hard and I am still recovering although as others have said the chemo is the hardest and longest lasting.  Having said that I am active walking several miles most days and my weight is stable so I’m doing ok.

my concern, if I had your dilemma is that this is a hard cancer to diagnose and if left can lead to other cancers which is one of the reasons it has a poor recovery rate compared to some others.  If you don’t have the op what would be in place to monitor you? Are there other options such as chemo to reduce the risk further?

There are organisations like the charity OPA who may be worth talking to, they will have people who had the op several years ago and so can say what it’s like to live with long term.

I can only say a year after my diagnosis things have settled down, I know how much I can eat now and I am a lot more relaxed about food than I was.  I am active and looking to go back to work soon, it is becoming my new normal and it won’t stop me doing what I enjoy in the future. 

Its a big decision which I don’t envy you having to make.

Best wishes

Hi Geo,

Thanks so much for your response and thoughts.  Yeah, as part of trying to understand such a radical surgery for my situation, I am trying to weigh-up the (albeit small) possibility of it getting to lymph nodes.  That certainly wouldn't be ideal.  I still can't help but feel, that for my situation, it's like a case of "let's amputate your leg so that you don't get foot cramp in years to come". 

Once I heard, "cancer has been successfully removed", and "75% chance that all is ok", I certainly didn't anticipate the follow-up sentence to be, "but we still need to remove all of your oesophagus and 25% of your stomach too.  It just seems beyond extreme.  And then, I get told...... "there is no crystal ball and no guarantee either. After surgery, pathology may return a result to say there was no further cancer and so we removed everything for nothing, or that there was a few additional cells found and removed, so surgery was justified, BUT, you could still have a further cancer in six months or ten years as a result."  Not exactly great choices.  I have a follow-up with the cancer nurse & team next week, so hopefully they can answer some questions for me and the info might help me to make a decision on whether to go for serious surgery, or to take my chances as is.  Best of luck for your 3rd round.

Hi J,

Thanks for writing back. God, that seems rough going... 7 months or so after surgery and only 90% recovered.  That must have been a difficult period.  You touched on the "life changing" differences during recovery, but was there anything specific, or something that was worse than others?  I've read up a bit since I got my news, and I've heard a lot of people saying (post op) that your days for lying normally in a bed at night are effectively over after surgery.  Some just seem to use wedge pillows, others raise the head of their bed, some seem to buy an electric bed for inclined sleeping.  Also heard that ongoing PPI can cause colitis?  Not to mention the obvious... about it being very difficult to eat normally, develop a normal and varied diet again and to stop losing weight.

Chemo doesn't seem to be on the cards for me because this cancer was caught so early.  (I'd hate to think of what you go through when it's caught so late!)  You're right, it is an awful decision to be faced with.  Mid-40's, in excellent health (apart from this) and with a very young daughter at home.  75% seems like good odds, instead of serious life-altering surgery that is going to be debilitating for months afterwards., and then 'whatever' after that.  As I mentioned in a different reply to someone, I meet the team again on Monday, so hopefully I get some clarity, because right now, I feel like running away and burying my head in the sand.  Hope you guys get some news and closure soon.

They certainly do hang you out to dry. I think you will get some answers from your meeting but I fully understand the dilemma they've put you in.

My staging was T3N1M0. I don't know if that will change after chemo or whether it will just make the tumor smaller. But if they tell me it's nearly disappeared I'll be in a similar position as yourself. Then what?

I picked up a dose of COVID after last treatment so having to put this round back until I have two clear tests, hopefully just a week. I'm looking forward to that even though it knocks everything else back.

I'm sure with the right advice you'll take the correct decision for you. 

Best regards

Geo.

I fully understand your point regarding the ‘Amputating your leg to prevent leg cramps in years to come ‘ You are right in saying there are no guarantees but if you have the opportunity which could possibly reduce the odds on you becoming seriously ill in the future and your situation becoming even worse than it is now ..why not take that opportunity? ….A different scenario to yours but my husband also hesitated for a while before making his decision in accepting the surgery and he did look down the route of just chemo and radiotherapy but after much soul searching he eventually decided to opt for the surgery and afterwards he was ‘happy to be rid of the damn thing ‘ (meaning the tumour and not his Oesophagus!) and he still maintains the surgery part wasn’t the ordeal he anticipated .....I wouldn’t say it’s been rough going for the entire seven months as things do start to settle as the healing continues but as I’ve said before the chemo hit him hard and it’s stopped him doing a lot of things he enjoyed before he became ill as it’s affected his mobility but maybe that’s because he’s older ..The consequences of the surgery .eg The new little and often eating regime ..or ‘grazing ‘ as his surgeon called it has been a bugger to get used to ..It seems to take up so much time in the day ..the not eating two hours before bed and having to sleep virtually sitting up has also taken a bit of getting used to ..and it’s also  taken him almost a year to regain  the majority of his weight loss ..but we are becoming used to our new normal as time passes ..living each day as it comes ..learning to adapt and breathing easier after coming through  what I can honestly say has been the worst 13 months in our 43 years of married life ..We live in the now and we totally feel it’s all been a small price to pay for his life …We also feel very fortunate that he could be offered the surgery as he lost a friend to OC just before his own diagnosis..His friend was 59 and sadly it was too advanced by the time his symptoms showed up (totally out of the blue whilst on holiday ) so surgery wasn’t an option and sadly 19 months later despite all the alternative treatment he received he sadly passed away ..He had a family and so much to live for and I don’t think my husband has ever come to terms with it ..So you can imagine the shock when he was diagnosed with OC himself a few weeks later ..it affected him psychologically throughout all his treatment and even now he has his ‘moments’ and is on meds prescribed by our GP ..So this hasn’t helped his situation at all….…

I fully understand how you feel like running away and burying your head in the sand as It’s a truly awful card to be dealt with  ..(my husband compared it to being between a rock and a hard place)  but please don’t make any decision without gathering as much info as you can and before looking into every possible treatment method which could help you to prevent a recurrence and overcome this disease ..Treatment for OC has come a long way over the past decade and there may be a suitable alternative treatment out there somewhere for you …Even seek a second opinion with another specialist or at another hospital if needs be before you make your decision .

Just to add this has been my husbands experience and may not necessarily be yours ..It may be the same type of disease but each individual person’s experience is unique to them .Some bounce back very quickly from the surgery /treatment ..but some take a while longer .You won’t be having chemo so you’ll be fighting fit if you do opt for the surgery ..My husband hadn’t recovered from the pre op chemo and was three stone underweight when he had his surgery and he came through it without any complications ..

I read your post to my husband and he said it was hard enough for him to accept at his age so for someone younger it must be even harder ..He also said listen  to your specialists as they deal with this everyday and they definitely know what they’re talking about ..but ‘one size doesn’t fit all ‘ and you must do what you think is right for you ….Have no regrets about the decision you make even if you’re prepared to take a risk ….He wishes you the best of luck in whatever you decide .

regards J 

Hi JacPop, thanks for your reply and sorry for the delay in responding... my head is a bit melted with reading up so much stuff and checking out other websites.  It sounds like you've had a year to forget, but it is great to hear that you are coming out the other end of it and getting stronger.

For me, (at stage T1bN0M0) and following a successful ESD, there is nothing further to diagnose.  The tumour has been successfully removed and is no longer a part of me.  The concern the surgeons have, is the small 25% risk that any 'seedlings' which the tumour sprouted off into the sub mucosa before being removed, may cause further issues.  There's a 75% chance they won't, because they haven't even got to the muscle layer, but still a 25% chance that they do.  There is no Chemo option on the table, because they say there is no tumour left to treat.  This is the significant reason why I am questioning the need to go through such a huge surgery to remove all of my oesophagus and 25% of my stomach too, with no guarantees either way.  Having just read the OPA 'guide to life after oesophaheal surgery', I am even more concerned with having such a monumental surgery now.  Swallowing issues, loss of taste, gastric retention, painful physio to expel fluid, being out of work for possibly one year, sleeping as I know it being officially over, dumping syndrome, etc.  This is quickly becoming the worst horror story ever.  By all accounts, it seems to get easier over time, but it's a lot to 'take in' and even more so to consider when the tumour is gone and I'm T1bN0.  Best wishes for your continued recovery.

Hi again Geo, yeah.... hanging you out to dry is about right.  I'm meeting the team in the morning, so will hopefully get some more answers then.  God, I don't envy anyone who is faced with such a decision.  As I mentioned last time, when I heard "cancer has been successfully removed", and "75% chance that all is ok", I never thought I'd now be facing this sort of situation.  What a nightmare...

Hi J,

Thanks so much for your reply.  I don't really mind the fact that there are no guarantees with or without surgery (I've always been a "there are no guarantees in life sort of person"..... well, except for death and taxes - as the saying goes). I'm just a little put out at the idea that I don't have a tumour any longer and I have a 75% chance that all is ok.  Had they come and said to me; "lets just be 100% certain by removing a small portion of your oesophagus near this tiny 20mm tumour we successfully removed, just to be thorough", I would have agreed no problem.  But when they mentioned removing all of the oesophagus and a quarter of my stomach too, I thought I was dreaming.  It's more, the implications of the surgery (and their long-term effects) that is getting to me, not the surgery itself.  It will also be very tough on my young daughter to witness for such a prolonged period of time, (although I suppose, so would her dad not being around any longer.  I'd know, I lost my dad to a heart attack when I was only seven, so that wasn't an enjoyable experience in my formative years, and has haunted me ever since.)  Won't be easy to tell her that I can't play, or chase her for a long time. Your 'grazing' comment made me laugh though, because I was thinking the exact same thing... I'll just end up in the kitchen the whole time and I can't even think about how it would be managed in work.  Although, it seems like 'work' will be out of the picture for at least a year, so that also poses another problem.  Your advice is welcomed J and thank you.  I will definitely be seeking further information, and/or second opinions before any decision is made on my end.  Best wishes for a continued recovery to your husband.