Met with my onc today. For background I had goj cancer that had grown into my stomach with lymph node involvement. Operation to remove my full stomach 8 weeks ago was a success although my margin wasn't the required 2mm clear (but was 1mm clear) however I had 16 lymph nodes test positive for cancer - not great I know.
The surgeon estimated an 80 percent chance of reoccurrence and I came to terms with that and met with my onc a fortnight ago and he prepared me for post op chemo (which was a little worrying considering despite the clear improvements in my swallowing, pathologically it seemed to have very little effect pre op). Anyway, my wound from my op and a lumpectomy I had (turned out to be benign) on my back haven't healed properly yet so I had to go in to see him again today as he wanted that to have settled before embarking on the next cycle - with a view to starting chemo on Friday.
I've had no tests or results in the meantime. He sat me down and told me that he and his colleagues had now decided that I have incurable cancer because it will definitely come back in their opinion due to the number of (removed) lymph nodes involved. This means I'm now being offered CX plus herceptin(I'm HER2 positive) starting in 6 weeks once I've had time to recover, my wounds have fully healed and I've had a ct. I will then be scanned pretty regularly.
I feel a bit confused and I'd be interested to find out if anyone has come across a similar situation before. They are expecting my ct to show nothing but that there is microscopic cancer. This is fine and frankly expected but I thought this could be dealt with in the post op chemo.
Also, there has been no evidence of metastasis through the the testing period and still none. I feel perfectly normal (considering I have no stomach) and was pretty positive up until this meeting today.
Does this sound unusual, being diagnosed with no evidence (although I accept the odds aren't great). I guess I'm looking for some hope or advice if anyone can give any.
Thanks in advance as always.
Written by
gwood80
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All that I can say is virtual hugs - sorry that I cannot be of much use here. I do know that an uncle of mine had cancer similar to yours in his late 30's-early 40's and that he got to his mid 80's before another cancer got him but another 40 odd years and even helped me when I wad diagnosed.
Thinking about this again. I know that the statistics are challenging but you can still get through this - mine were worse and I am past 10 year survivor at this stage. Sending you virtual hugs, it is understandably a shock though.
I agree it sounds odd. There is obviously a fairly high probability, but reoccurrence occurs, as far as I remember, around 70% of the time - predominantly in the first year, so we're all awaiting the wheel of fortune. Obviously the chemo and herceptin sounds like the right thing to do but he cannot possibly say it is incurable unless he knows something he has not told you. I would ask him to clearly layout the reason you are considered incurable - at the end of a day it is a medical opinion not a fact unless he has proof it has metastised and even then he can't be sure the adjavunct chemo won't work. As my surgeon said, his scalpel is no match for the biology of cancer, he can only do his best and frankly after that it's luck as to whether it returns or not especially when you don't know the reason why you got it in the first place (at least I don't). He harvested 31 lymph nodes off me, despite only 1 being positive at diagnosis. Perhaps he only harvested 16 and so thinks the rest may have cancer too? It's the only logic I can think of but of course he can't know for sure unless something shows up on a ct or pet scan. Honestly makes my blood boil the way they present the facts. I am surprised at the margin as well as my understanding is a bigger margin, but again each surgeon will have their view as to what that is - mine took a 5mm margin but then I had had radiation as I had a mid-oesophageal SCC - they discovered a tiny skip lesion (bypassed the radiation) and so had to take a margin above that - so I lost my entire oesophagus - just a small stump left. Plus despite the chemo (8 rounds), I had nerve invasion (not a good sign - one of the worst signs of likely reoccurrence) but despite this both my ONC and surgeon think I have a good a chance as any!
Personally I would get a second opinion and ask of a copy of the lab reports as you are entitled to these. It's your life and every doctor has his view. Personally, I think being realistic is fair but saying something like that is unacceptable. Honestly some of these oncologists should do a course on EQ and understand the impact of positivity on human health.
They harvested 19 nodes and 16 of them were cancerous. He offered me a second opinion but my GI nurse told me he reached this decision after emailing 5 of his colleagues my scans, info etc. To be honest, I'm glad in a way because I'm getting herceptin and ou can only get it when incurable but it just seems strange to be labelled as that without any evidence it has returned. They are clearly speaking from experience which is fair enough, they're the experts, not me, but it just seems so final.
People can and do survive this and similar prognosis to you. You have to focus on being a survivor. I considered that I was a survivor as soon as I was diagnosed as they could finally do something about it. My chances of survival were not the best but my husband focused me on being one of them that did. I am glad that you are getting a good treatment.
Good comments below I 100% agree with AoifeMcC and know you will be going through hell at the moment best of luck to you. I too had worse T4 cancer had stomach, lower oesophagus can't remember how many lymph nodes taken away. Very poorly after, 10 days i.c.u. 4 weeks in hospital long hard recovery after. I was told there was a 70% chance come back in 3 years and just celebrated 10 years March. I don't get a good day one thing and another but learned to live with and accept it is not going to change or get any better. I think trying to stay positive, strong helps wish you all the best.
Stay positive, I think ther er in the side of caution, I was told they would not tell me I am cured just they cannot see any visible signs of it & they are confident they removed it all. I had 50 nodes removed all clear but they still went ahead with chemo & radiation. I was at salisbury for first rounds of chemo, Bournemouth for surgery & the Poole for chemo/radio combined. I think my surgeon was not impressed with my oncologist at Salisbury as he had eluded to me not needing more chemo due to its response to fist tranche plus the surgery but the surgeon disagreed.
They do have differing opinions & although I would love not to have had the last lot of chemo/radio if it means it won't come back then great.
Stats can be fudged any way to fit the answer so choose which way you want to go & I hope it's on the positive side, heads up every time.
In a way there are positives to be taken. All the statistics are pretty depressing, but bearing in mind the average age of developing this cancer is 70 I think us much younger sufferers can take a lot of the statistics with a pinch of salt. The fact that they are going to scan and monitor you regularly is a result in my opinion. I have been told that I will have no more routine scans and will be pretty much discharged in 6 weeks when my chemo is finished. I already have anxiety about this and can imagine will either be on the phone every month with imaginary symptoms to force a scan or bankrupt myself paying for one privately!
Adenocarcinoma, poorly differentiated, 16 lymph nodes out of 19 positive.
I do not think that removing more lymph nodes actually increases the chance of the cancer spreading. My understanding is that the reverse is true, as it is through the lymph nodes that the cancer spreads.
I suspect that the oncologist was preparing you for the fact that the odds were against you remaining clear of recurrence. If the surgeon put your chances as 80% recurrence that is a professional judgement and opinion. But for every 5 patients for whom he makes that judgement, one will continue without recurrence and you have that thought to hang on to. If you had not had the surgery the 20% chance would not exist at all!
Every so often there are patients who undergo surgery when they have been given an earlier opinion that the cancer is not treatable, and then survive OK, so I think it calls for cautious optimism, continuing realism and enjoyment of life for however many years ahead.
All patients who have had cancer treatment have the fear of recurrence to deal with in some form or other and your situation is not really any different in principle. Which does not make it any easier to come to terms with of course.
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