This is my first post as I found my situation very hard to talk about in the beginning but I am interested to see if anyone else is in a similar situation to me.
In April 17 I was diagnosed with stage iv cancer of the stomach, which had started to encroach the oesophagus and had spread to the abdominal lining which made it inoperable.
T4a, N1, M1 (peritoneum) poorly differentiated adenocarcinoma with signet ring cells.
My situation wasn't great and I quickly started E.O.X chemotherapy. I was hospitalised twice with the side effects of the chemo and had constant nausea - but I had a really supportive Oncologist and I managed to keep going, completing 6 cycles in total.
I started to look into clinical trials half way through my chemo treatment and was surprisingly offered a place on a trial in USA which offered a gastrectomy with HIPEC (a new procedure where chemo drugs are pumped into abdominal cavity and heated in the hope it will kill the cancer in abdominal lining)
After asking my Oncologist for advice, he suggested I have a repeat staging laparoscopy and endoscopy to see how my cancer was responding to the chemo and he would then be in a better position to advise me with regards to the clinical trial. I was also having second thoughts about having major surgery so far from the UK.
Long story cut short but as a result of the second laparoscopy/endoscopy and CT scan and the fact that my cancer had responded so well to the chemo, I was offered surgery as an option in Aug 17. The whole MDT agreed with this and I am booked in to have a complete gastrectomy and the removal of the bottom part of my oesophagus in mid October 2017.
I have been told that my situation is unusual and the surgeon has said that he cannot offer me a cure with the surgery. It's a wait and see what happens situation. He has also said that if they open me up and find anything suspicious, then the main surgery would not go ahead.
My fear is that I will have the surgery, with the long recovery period and challenges and then have the same outcome as deciding against surgery. Although I understand that nobody has an answer because everything is unknown.
I also live on my own (I am 48) and I am concerned that I will struggle on my own after the surgery.
Any advice or support would be great right now.
Sorry about the long post!
Best wishes
Jennifer
Written by
Jennyretro
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Hi Jennifer, so sorry to hear what you have already endured and what is still to come and whilst I had the Ivor Lewis op some 7 1/2 years ago that was always aimed at curing from the start so my decision was simple. But, if I was in your situation I would definitely continue to fight. We all know the outcome if we simply accept the situation which to me would never have been an option. I was fortunate to have lots of support from my wife but am very confident that had I been on my own I would have coped by preparing beforehand small meals made and frozen, arrange food deliveries etc I would say go for the surgery as not to to accepting this disease has won, good luck and if you want to talk just let me know and I will supply my number to you
Thank you for your words of support Ray. I am looking into having meals delivered - I have found a company that make smaller, soft meals aimed at small appetites, so hopefully this may help until I am well enough to cook for myself x
good luck with that Jennifer. you can always order in meals and keep them in the freezer. I had my op 9 years ago and sometimes life is still a struggle but thankful I am still here. hope everything goes well for you..you are so young as well. keep fighting. xx
I am so sorry for your situation and I am amazed how brave and strong you are especially being on your own. It is standard to tell patients surgery will be extended or aborted if when opening you up they find a spread greater than expected. So I wouldn't worry about that - it is to be expected. It is incredible you are in the position to have the surgery - 6 rounds of chemo is very intense.
I am not clear on the surgeon saying it is not a 'cure' (cancer is never cured it is just kicked into remission) as the idea of the surgery is to try to excise it in the hopes of getting rid of it completely. Are you saying that there is still spread in the peritoneum so this will remain? Obviously a gastrectomy (I had a oesophagectomy for T3, N1, M0 - squamous cell not adenocarcinoma ) is huge and a very long and hard recovery - you will need someone to care for you for at least a couple of months afterwards. However, removing the cancerous area gives you a big chance at survival - I think you have done amazing considering you were Stage 4. Also have you considered consulting another surgeon just to get another view? I did this and it was a great help and helped make my decision. It is your life and such a major decision - It's worth it I think. I also did a huge amount of research online so I could make an informed decision as the short time you have with a consultant really does not give one enough time to cover it.
I am a 54 year old woman and if you should need any support I am available daytime to chat to - just message me privately and I'll send you my number.
I know you have a tough decision to make - I wish you all the best and I hope it soon becomes clear.
I think the surgeon told me that he could not offer a cure with the surgery as most people are stage 1-3 and are offered the surgery with curative intent.
For me, the cancer has already spread but has been killed off by the chemo. So there maybe a chance that microscopic cells still remain.
I understand what you are saying but remember it is the same whatever the stage as 1. they don't always stage correctly - esp with stage 3 and 4 2. even if it is 'contained' and they may not get all the microscopic cells. 3. it is with curative intent or they would not offer you the surgery if you were going to die of the secondary spread anyway. The best they can assume as in most cases is that the chemo or chemorad as in my case (I had both) that it is killed off. However during my surgery they found more cancer (a skip lesion) so they took out my whole oesophagus. They can never be sure its all gone but at this stage they will be assuming it is in remission or they wouldn't offer the surgery. If I were in your situation I would have the surgery. It offers the best chance at a 'cure'.
Very interesting to read your response, I suppose I always think of stage 1-3 as being completely different to stage 4 but you are right that things can change when they perform the surgery.
I heard from the hospital today and I have my pre assessment next Wednesday, so I will be given more information then.
Hi Jenny, i am 17mths post Ivor Lewis op. 55 years old. Yes it is a big op and you will need someone to help you after. Although i was lucky to have a husband and daughter around my friends have rallied round to help. It is amazing how some people good friends shy away ,but others step up. I had shopping delivered. Friends still take me out for coffee shopping etc.
I was told also if they opened up they could abandon at anytime. I have a very complex body as found out have Polysplenia and veins arteries were in different places as well as organs.
I was diagnosed six weeks ago with stomach cancer. I live in Central Europe and only found out two weeks ago the English name of the type of tumour I have. It is Signet Ring Cell Carcinoma which I believe is quite rare.
I have had the first of 4 chemo sessions which will be at two week intervals. Then if all goes well with chemo surgery to remove my stomach will follow.
I feel the same as you in that I could put myself through all this and will not buy myself any more time than if I had done nothing and maybe spend my last precious months as an invalid. On the other hand I am only 57 so if I get a few years it will be worth it.
I feel for you being on your own. I have been very lucky because my ex-husband (with whom I'm still friends) has come over from Scotland to take care of me. If you need someone to talk to please contact me.
You have a big decision to make. I hope that you make the right one for you.
Hi AM, Sorry to hear you are going through this as well. How are you getting on with the chemo? Hope you are not having too many side effects. My infusions were every three weeks with tablets for the 21 days in between.
Hi Jenny. I did not have my planned chemo last Wednesday because my leucocytes were too low. They gave me an injection on Wednesday then I had to self-inject on the following two days. I came in to hospital this morning but when they did the blood tests they were a little concerned about my liver results so they decided to do only a half dose of the first drug. I then had the next two drugs. The 4th one was connected and it had its own pump. It takes 25 hours so I was supposed to go home and come back early Wednesday morning. No sooner had they hooked me up but my voice started to go funny. It was almost like I was on helium. The nurse didn't seem overly concerned and carried on with the process of discharging me. I asked if the doctor was still there but he had left for his surgery. She then went to talk to a more senior nurse who called the oncologist. He insisted I stay overnight and came back to see me when he finished his surgery. He said that what I experienced was rare and that next time, to be on the safe side, my treatment will be done in hospital not as an outpatient. He also will take an extra day over it.
I am sorry to hear you are feeling down this evening. I had a very similar experience with one of my chemo drugs, Oxaliplatin. Every time I had this drug it would affect my voice, I also couldn’t swallow very well for a few hours. After my second cycle, I collapsed because of this drug and had to be admitted to hospital for the night!
I subsequently had a port fitted and the infusion times increased so that I was at the chemo centre all day and after my third cycle, my dose was reduced by 20%.
I also had to postpone one of my cycles due to low blood levels.
After everything I went through (including being hospitalised after the first cycle due to uncontrollable vomiting!) I ended up having a good response to the chemotherapy...so don’t give up
I am in a kind of similar situation to you. I'm 40, and my tumour was at the junction and I've subsequently discovered it was more a stomach cancer than oesophageal. Anyway, after a lot of humming and hawing they decided to operate, making it clear that they felt there was a good chance the operation would not be able to cure me. For me, it transpired that chemo had a negligible effect, so I came out of my gastrectomy to find the pathology wasn't great: an R1 resection and 17 of 19 lymph nodes positive meaning I was t3n3m0.
I had my op on April 4th and I would say I am at 95% of my old self. Sure eating is less of a pleasure and I can get tired quite easily but I'm now considering returning to work part time in a month or so if I'm still clear. And that's the point: they've said I'm incurable because with such rubbish pathology results it's unlikely they managed to get everything. I didn't even have post op chemo, I'm on watch and wait to save the big guns for when (if!) they're needed.
I know if I hadn't had the op my quality of life would be immeasurably poorer, my swallowing was deteriorating rapidly, i was getting tired all the time, I don't think I'd even be able to manage liquids by now. I might not even be here.
The way I see it the op has given me more time, and 3 months out I was still clear and I'm feeling great just now - about to go a family holiday to the canaries on Saturday.
I do stress that I had quite a smooth recovery from the op, but I know I made the correct decision for me, despite the unfavourable results.
Hope this provokes some thoughts and I wish you the best of luck
Thank you for your response and it's good to hear that you have recovered well since your surgery in April and that you are about to go on holiday. I suppose I am scared that life will be so different for me post surgery that I will regret having it done but reading your email has given me some hope!
I love your direction and strong sense of hope you bring to Jennifer. I am 10 years post op ( Whipple procedure) and I too was told they would abort the surgery if it had spread or was more than 65% of my pancreas. Waking in intensive care with a breathing tube was delightful to say the least. Knowing I'd been in surgery 12 hours was even better. Indeed it was only the beginning of a long journey to feel better and be myself again. However it was a wonderful 10 years. My problem since 2015 July I've been so nauseas pain in my abdomen and fatigue I feel it's back or went to esophagus
I will have an EDG on October 2 they will check stomach and implant a chip to measure amount of acid being produced. I've been so sick nausea daily even sore throat. Going to acupuncture daily for some relief of nausea and pain. I have been on every proton inhibitors there are nothing helping . My current diet it some dried oats and hot chai tea
I think you can have some comfort from the fact that the whole MDT (presuming that this is in your UK hospital) were supportive of surgery on the basis of the good reaction to the chemotherapy. Are the MDT equally supportive of the trial proposition? As for the trial, even if it does not work eventually for you, you will have contributed to making things better for others along the line into the future.
I understand about the 'opening you up and finding things that are suspicious'. I think I would just want to check about this as, as I understand it, this happens very seldom now as the scanning that takes place prior to surgery is so much more comprehensive than it used to be. It might just be that the surgeon was simply covering off that possibility because of the 'poorly differentiated' comment.
The other thing to think through is how it would work for your stay in the US hospital, the financing of the treatment, and then any convalescence before you were fit enough to fly back home?
It is indeed major surgery and it will take a lot out of you in the recovery phase. Whichever way you decide, you would always be able to wonder what would have happened if you had not chosen the option you did. I do know of other cases where people have had a good outcome from surgery where some surgeons have judged that it would not have been possible. It does depend on the skill and experience of the surgeon. There are a good many people who have had complete gastrectomies, who have a reasonably good quality of life and do not regret the decision.
If you do not go for it, then presumably your situation will deteriorate anyway. In some ways it is making a decision about how you would wish to spend the remaining period of your life, however long or short that may be.
The MDT team (in the UK) are supportive of the clinical trial but have raised concerns regarding the financial impact it would have on me if something went wrong. Although the trial is still on the table, I probably won't go ahead. After much thought, i was concerned about being in America on my own and how I would manage getting back to the UK. Not to mention the fact that it's completely impossible to get any kind of travel insurance!
One thing I have found difficult is that due to the good response I have had with the chemo, my eating is completely back to it's pre cancer state and to all intents and purposes, my life is completely normal at the moment. Although I know I am probably suffering a false sense of security.
from what I have read on the web, the surgery seems like the best option, except that most people are not stage iv, so there is not very much data on outcomes to go on.
It's been really helpful hearing from people on this site though and I think it has given me more confidence to go ahead with the surgery.
Jennifer good luck I go with all the replies but want to say that getting through the 6 rounds of EOX is brilliant and if it has as it looks shrunk the metastasis significantly then i would think positively and go with the doctors who will want to do their best and will. As has been said the caution about what they find when they open you up is entirely routine I was amazed at how cautious ( ie heavy on the potential negatives) they all were dont let that worry you unduly. Be prepared to feel very tired for a long time after the op as your body gets used to its new food mechanism.
Thanks Mark. Six rounds of EOX is not something I will forget in a hurry, particularly the Oxaliplatin!
I feel so normal at the moment that is hard to think that the surgery will change all of that - and a couple of friends have said that if they were in my position, they would choose not to have the surgery. But I am trying to think positively about what the doctors have offered and trusting their instincts to do the right thing for me.
Personally I would rather listen to the advice of the expert care team rather than my friends, put in its simplest form 'they know not what they do' is a quote which I feel applies to only one of those groups and whilst we may appear to be fine to our friends the medical team know best. It is a hard decision and has to be the right one for you but I know I made the right decision as many are not offered this chance to be 'born again' I celebrate 2 days a year my birthdate and my operation date 🤗
I can only reiterate that while it is a tough recovery from surgery it is very doable and I have to say not as bad as I thought it would be. I am now in the position of having a chance of survival (however small) whereas had I not had the op I would have no chance of survival. To me that was a risk worth taking
YOu've done so well - I had Oxaliplatin too - it was horrendous - i had grade 3 neuropathy from it and still have some side effects. So well done.
I was on a walk when i got a call to go in and see the Consultant the next day. i had been diagonosed 6 weeks previously. He explained the Ivor Lewis op and was very graphic in the details and all the risks which even shocked my brother and daughter.Spelt out this was the only option. 8weeks later i'm recoverying well and able to get out and about with just pain down my right hand side. So i'm glad i had the operation and didnot hesitate to sign the consent form. Hopefully it will all go well for you.
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