Good Result - wonderful day!!!
I wanted to share some good news after such a long struggle.
Rob was diagnosed in the summer of last year with EC stage 111.
Fortunately, the EC was operable and on the 29th February, Rob had
surgery in Addenbrooks Hospital Cambridge UK. It was not the Ivor Lewis,
but was a massive op as Mr Safranek, the surgeon, thought that the chances
of recovery with such a large tumour were better and the tumour size negated
an MIE. At the time of the surgery the tumour was 5.2cms.
Mr Safranek and his team are very experienced and we believe that they have
given us a chance of, at least a longer life together. They are wonderful!
Rob had had three cycles of Chemotheraphy prior to surgery, but the tumour
had not shrunk much at the end of the cycles. Rob had a complete removal of
the oesopagus.
He also had three suspicious nodes close to the tumour.
The side effects from the chemo were not too bad at all and apart from having,
what he says tasted like a mouthful of coins and throat restriction on the
seventh day of each cycle he was doing well.
We made sure that we walked four miles every day for three months prior to
his surgery to prepare him for it and keep him strong. From when he was first
diagnosed we put him on a special diet. He did not lose too much weight after
we started this diet and all these things helped to keep us focussed and strong.
The surgery seemed to been successful and although he suffered some discomfort
he came through it really well.
On Friday, we had our appointment with Mr Safranek and his team at Addenbrooks
to receive the pathology results, a medical examination and see where we go from
here.
We were told that after surgey, the news does not get much better that this and
although Mr Safranek removed 29 nodes, only two proved to have cancer cells and
these were the two nodes close to the tumour. All the rest of the nodes were
clear. It was his belief that to the best of his knowledge, he had gotten all
the cells and although he could not make any promises, he thought we had a really
good chance of recovery. Rob also does not have to have any more chemo. Bonus!
We obviously have to go back in six weeks and then three months and then for
regular appointments, but for the moment, we are just basking in a feeling of
utter euphoria at the news. We can't wait to go back to Spain to visit our
daughter and little grandchildren.
It has been such an emotional roller-coaster.
I really wanted to share our journey with you all, as at my times of dark despair
I only had you to share it with and and I can't thank you all enough for your
kindness and support. For us, there is a light at the end of what has been a very
dark tunnel and I pray that that light will shine on you all in the coming days.
Thank you.
God bless you all,
Prayers and hugs,
Marci x
Comments
-
congrats
Dear mardigras,
Glad to here tht u r husband had a sucessful surgery and I hope he remains cancer free rest of his life.... My dad had surgery in december he was staged 3 after surgery and only one node tested positive ...but the doctors are still giving him chemo which they say is the part of da protocol, and they don't wanna take any chances .... He has alredy gone under three chemo post op and last one is schedule on first week of april ... Chemo has been tough but I would ask u to ask your doctors opinion again about chemo .... Its better to play safe ....I hope u r life gets back to normal asap
Sincerely
Shammi0 -
Hello Williamunknown said:This comment has been removed by the Moderator
Thank you so much for replying to my post.
The closest nodes to the tumour that Rob had removed had cells in them.
The other 27 nodes further away did not have any cancer in them.
The surgeon and his team told us that they believed that they had gotten
all the cancer.They thought that further chemo was not necessary.
Am I correct in thinking that you disagree with that diagnosis.
Rob was so happy to be finished with chemo and I don't quite know how I
will break this news to him. He has been through so much and been so brave.
If you really feel that we are skating on thin ice then I will broach it
with him and perhaps try for a second opinion.
Thank you William, even if this was not what I wanted to hear.
Prayers and hugs
Marci0 -
There are differing opinions about the value of post op chemomardigras said:Hello William
Thank you so much for replying to my post.
The closest nodes to the tumour that Rob had removed had cells in them.
The other 27 nodes further away did not have any cancer in them.
The surgeon and his team told us that they believed that they had gotten
all the cancer.They thought that further chemo was not necessary.
Am I correct in thinking that you disagree with that diagnosis.
Rob was so happy to be finished with chemo and I don't quite know how I
will break this news to him. He has been through so much and been so brave.
If you really feel that we are skating on thin ice then I will broach it
with him and perhaps try for a second opinion.
Thank you William, even if this was not what I wanted to hear.
Prayers and hugs
Marci
Marci,
I had Ivor Lewis surgery and my post operative pathology showed one positive node out of the 27 they removed. My surgeon recommended post operative chemotherapy.
Like your husband; after enduring and recovering from major surgery, and dealing with the digestive issues of my new digestive system, the LAST thing I wanted to hear was more chemo!!
But I did it, and I am happy that at least I did all I could do to kill any cancer that may be left.
There are differing opinions about the value of post operative chemo, and doing it is certainly no guarantee of staying cancer free. But I felt it was the best thing to do even if some doctors suggest it is not necessary.
So far my scans have been good.
I have my annual scan scheduled for tomorrow so we will see if I am still lucky enough to stay NED.
I would at least get a second opinion on the chemotherapy if I were your husband.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
Thank you Paulpaul61 said:There are differing opinions about the value of post op chemo
Marci,
I had Ivor Lewis surgery and my post operative pathology showed one positive node out of the 27 they removed. My surgeon recommended post operative chemotherapy.
Like your husband; after enduring and recovering from major surgery, and dealing with the digestive issues of my new digestive system, the LAST thing I wanted to hear was more chemo!!
But I did it, and I am happy that at least I did all I could do to kill any cancer that may be left.
There are differing opinions about the value of post operative chemo, and doing it is certainly no guarantee of staying cancer free. But I felt it was the best thing to do even if some doctors suggest it is not necessary.
So far my scans have been good.
I have my annual scan scheduled for tomorrow so we will see if I am still lucky enough to stay NED.
I would at least get a second opinion on the chemotherapy if I were your husband.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor
Life may not be the party we hoped for, but while we are here we might as well dance!
Thanks for your slant on the chemo front Paul.
I just feel so bad about mentioning more chemo to Rob.
The last thing that I want to do is burst his bubble.
He was so very happy to receive the news and we were
planning on going back to Gran Canaria in a couple of
weeks for our grandson's birthday.
Now I don't know what to do as more chemo means we
can't go back. The surgeon seemed so confident that he
had gotten it all and we believed him. Now i'm not so
sure. Why is life so difficult?
I will sleep on it and decide what to do in the morning.
Prayers and hugs and thank you.
Marci0 -
This comment has been removed by the Moderatormardigras said:Thank you Paul
Thanks for your slant on the chemo front Paul.
I just feel so bad about mentioning more chemo to Rob.
The last thing that I want to do is burst his bubble.
He was so very happy to receive the news and we were
planning on going back to Gran Canaria in a couple of
weeks for our grandson's birthday.
Now I don't know what to do as more chemo means we
can't go back. The surgeon seemed so confident that he
had gotten it all and we believed him. Now i'm not so
sure. Why is life so difficult?
I will sleep on it and decide what to do in the morning.
Prayers and hugs and thank you.
Marci0 -
Seemed and Believeunknown said:This comment has been removed by the Moderator
Hi Sherri,
Thank you for replying. I have been lying awake, watching Rob sleep and trying to decide
what to do. I am going to contact the surgeon and see if he will speak to me before I
broach the subject with Rob.
I don't think any surgeon, even Mr Lukeditch would ever say 'we are absolutely sure'.
So what's the worst he can say eh?
Thanks again Sherri.
Prayers and hugs,
Marci xx0 -
Just some thoughts . . .mardigras said:Seemed and Believe
Hi Sherri,
Thank you for replying. I have been lying awake, watching Rob sleep and trying to decide
what to do. I am going to contact the surgeon and see if he will speak to me before I
broach the subject with Rob.
I don't think any surgeon, even Mr Lukeditch would ever say 'we are absolutely sure'.
So what's the worst he can say eh?
Thanks again Sherri.
Prayers and hugs,
Marci xx
Hi Marci!
I thought about your post most of yesterday. My husband was told that no follow-up chemo after surgery was indicated for him, mostly because its efficacy is not proven. Twenty months after his surgery, he faced a recurrence, entered a clinical trial, and experienced a remission. Now, almost two years later, he has had another recurrence. He has opted to enter another clinical trial and currently is doing well.
We did not seek a second opinion following his surgery, but I often wonder if follow-up chemo would have kept him disease-free longer. Guess that is something we will never know, but I think it is wise to explore other opinions so that you do not second-guess treatment decisions down the road. My husband was (and still is) very healthy except for EC. I believe he could have done fine physically with follow-up chemo. Mentally, however, he wanted to be done with treatement, so I fully understand your situation. If we had to do it again, though, I would pursue getting another opinion and then weigh options.
Best to you both,
Trisha0 -
I had one node that was
I had one node that was positive when tested. Chemo was started, but stopped because of complications. Even though I am still NED after four years, that one active cell is still a reminder of what could be. I would feel a lot better knowing I had taken every precaution. Of course,in my case it wasn't possible. I beleive I would consider taking it ,if at all possible, just for extra assurance,
Sandra0 -
Good Luckpaul61 said:There are differing opinions about the value of post op chemo
Marci,
I had Ivor Lewis surgery and my post operative pathology showed one positive node out of the 27 they removed. My surgeon recommended post operative chemotherapy.
Like your husband; after enduring and recovering from major surgery, and dealing with the digestive issues of my new digestive system, the LAST thing I wanted to hear was more chemo!!
But I did it, and I am happy that at least I did all I could do to kill any cancer that may be left.
There are differing opinions about the value of post operative chemo, and doing it is certainly no guarantee of staying cancer free. But I felt it was the best thing to do even if some doctors suggest it is not necessary.
So far my scans have been good.
I have my annual scan scheduled for tomorrow so we will see if I am still lucky enough to stay NED.
I would at least get a second opinion on the chemotherapy if I were your husband.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor
Life may not be the party we hoped for, but while we are here we might as well dance!
Hello Paul,
I was so caught up in all the fear of the latest messages that I completely forgot to say that I really hope your scans are clear. So sorry, that was selfish of me.
Good Luck, i'll be praying for you.
Prayers and hugs
Marci0 -
Thank you Trishatb7 said:Just some thoughts . . .
Hi Marci!
I thought about your post most of yesterday. My husband was told that no follow-up chemo after surgery was indicated for him, mostly because its efficacy is not proven. Twenty months after his surgery, he faced a recurrence, entered a clinical trial, and experienced a remission. Now, almost two years later, he has had another recurrence. He has opted to enter another clinical trial and currently is doing well.
We did not seek a second opinion following his surgery, but I often wonder if follow-up chemo would have kept him disease-free longer. Guess that is something we will never know, but I think it is wise to explore other opinions so that you do not second-guess treatment decisions down the road. My husband was (and still is) very healthy except for EC. I believe he could have done fine physically with follow-up chemo. Mentally, however, he wanted to be done with treatement, so I fully understand your situation. If we had to do it again, though, I would pursue getting another opinion and then weigh options.
Best to you both,
Trisha
Thank you Trisha for taking the time to answer my post and tell me about your experience.
I was so happy at Rob's surgeon's prognosis that I just wanted to share some good news with
everyone here in the hope that I could give some positivity to others and give something back to our community after all the help that I have had.
Yesterday, was a shock for me with all the posts, but I do understand that you are all trying to help and I do appreciate it.
I still have not broached the subject with Rob. I'm afraid I guess and I just don't want to spoil the first bit of good news he has had in such a long time.
I am trying to get a second opinion on it from another hospital and there 'Upper GI Team'.
I am also going to email all the points that others have made on here to Rob's surgical team. I will wait for a response from them and then tell Rob.
I'm a coward I know.
Thank you Trisha and everyone for your well meaning advice.
I hope that your husband stays well too. I will include you in my prayers.
Prayers and hugs,
Marci xx0 -
Hello Sandra and thank yousandy1943 said:I had one node that was
I had one node that was positive when tested. Chemo was started, but stopped because of complications. Even though I am still NED after four years, that one active cell is still a reminder of what could be. I would feel a lot better knowing I had taken every precaution. Of course,in my case it wasn't possible. I beleive I would consider taking it ,if at all possible, just for extra assurance,
Sandra
Thank you Sandra for sharing your experience.
I was just pondering what to do, whilst Rob is sleeping.
I have decided to just contact Mr Safranek's team and
hope that they will speak to me. They, i'm sure have a
very valid reason for saying no more chemo. I hope they
will speak to me without me having to worry Rob and pour
rain on his feeling of well being.
I truely hope you stay NED and happy for years to come.
Prayers and hugs,
Marci xx0
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