My dad newly diagnosed

Mary-Anne

Hi, I stumbled across this board and would be grateful for any help and advice as my family embark on our journey of supporting my dad who has esophageal cancer. A bit of background - my dad was having trouble swallowing at the beginning of November - he reached a point where he couldn't swallow anything by December and spent a week in hospital on a saline drip. He was scoped at the beginning of December and by the end of dad's week in hospital he'd been fitted with a stent and diagnosed as having Stage III (T3, N1, M0) adenocarcinoma of the Esophagus. We've been absolutely devastated by the news.... my dad lives well and eats well - he's never taken a day off work in his life. The oncologist (based at the Western General in Edinburgh/Scotland), suggested that the tumour was inoperable and dad had approximately 6-12 months to live. He embarks on his first round of Chemo on Thursday this week. The surgeon recommended that we get Christmas out of the way before treatment commenced.... A decision I have mixed feelings about.

Since his diagnosis I've done a some research, so I know a reasonable amount about this ghastly type of Cancer. Dad is taking curcumin with bioperine (Doctors Best Curcumin C3 Complex) - which I believe will be fine to continue taking while he is undergoing Chemo? He's also taking nutrient shakes prescribed by the hospital, drinking lots of milk and eating soup. I've just ordered some Carnation Instant Breakfast as I read on this board that it would be useful for building dad up (he has lost quite a bit of weight so far) - can't get it here in the UK, so it's being shipped over from US.

Another point is that I have a contact number for an organisation in the UK which I believe might be able to tell us if there is a surgeon locally who would be prepared to do minimally invasive surgery on my dad. Perhaps once my dad begins his Chemo we can explore getting a second opinion.

My family are being incredibly strong - we have enjoyed the most special moments of my entire life with my dad in the last few weeks. I would be very grateful for any advice that you can offer us........

Mary-Anne xxx

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Mary-Anne

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Thank you for your responses!!
Thanks so much for getting back to me - it has reinforced my concerns regarding the oncologists prognosis of inoperable..... Mum believes it's because of where the tumor is - very close to his stomach? I don't think the notion of getting a second opinion is one that is really commonplace here in Scotland, so I'm sure my parents have had faith in the oncologists prognosis. I will be pursuing this with mum tomorrow. My fear is that it might not be EC III (T3N1M0) anymore, as it's been a few weeks since that diagnosis. All I know about the Chemo is that he'll be receiving it intravenously over 6 hours tomorrow and then I think this will be followed up with tablets and more intravenous sessions..... I'll ask mum for the specifics tomorrow and let you know. Thank you so much for getting back to me I can't express how much it means - Mary-Anne x

dsh

Mary-Anne said:

Thank you for your responses!!
Thanks so much for getting back to me - it has reinforced my concerns regarding the oncologists prognosis of inoperable..... Mum believes it's because of where the tumor is - very close to his stomach? I don't think the notion of getting a second opinion is one that is really commonplace here in Scotland, so I'm sure my parents have had faith in the oncologists prognosis. I will be pursuing this with mum tomorrow. My fear is that it might not be EC III (T3N1M0) anymore, as it's been a few weeks since that diagnosis. All I know about the Chemo is that he'll be receiving it intravenously over 6 hours tomorrow and then I think this will be followed up with tablets and more intravenous sessions..... I'll ask mum for the specifics tomorrow and let you know. Thank you so much for getting back to me I can't express how much it means - Mary-Anne x

Time is everything
Mary-Anne

Sorry to hear about your Dad.

By the sounds of it your Dad is in an NHS hospital. Does he have private health care? If so, you need to get him out of the NHS system asap and into the private sector. I am sorry to have to tell you, but it seems that the NHS has already written off your Dad and will just give him palliative treatment - rather than the aggressive chemo and then surgery he needs to be able to fight this awful cancer. They took exactly the same approach with my Dad. It took them a couple of weeks to diagnose him and a further 3 or 4 weeks afterthat to even begin to think about getting him on a course of chemo (it seems that your Dad has experienced similar delays). They told us that these delays would make absolutely no clinical difference as his cancer had probably been growing for a couple of years. However, in spite of this, when he had his initial scans, the cancer had not been detected in any other organs; however, when he had a further PET scan a month later, spots had already appeared on his liver. Sorry to be blunt here (and I know a lot of Brits have affection for the NHS) but the NHS works on the balance of probilities. If they think it is unlikely that they could save your Dad by giving him surgery they won't do it. Although you may have paid into the system your whole working life you have no control over your own destiny at the time you really need to use the NHS.

There will be a few bureaucratic hoops you'll need to go through to get your Dad out of the NHS and into the private sector. I researched it too and it will probably take a week. You'll need to get his records transferred etc. We were told that there is a very successful clinic in London called the London Oncology Clinic where they have managed to salvage countless EC sufferers (even some at Stage 4) by using a multi-disciplinary method - by first using aggressive chemo and then surgery. They are world leaders in EC treatment and people come from all over the world for treatment there. I also spoke to one of the oncologists there (I can give you his name) and he seemed very impressive and reiterated everything I have said above about the NHS. Of course if you don't have private health care it will cost hundreds of thousands of pounds to go private, but if your Dad has it, if I was you I would take him out of the NHS and into private in a flash.

Unfortunately, if your Dad doesn't have private coverage (and you don't want to pay for it) you will find it near enough impossible to get a second opinion on the NHS. For a start if you went to a different hospital all your Dad's records would need to be transferred which could take awhile. Also, they may refuse to treat your Dad if he doesn't live in the hospital's catchment area. I also doubt they'd give a second opinion when a different NHS hospital has already looked at your Dad's case. I think you will need to go private if you want a second opinion.

Good luck. Let me know if you need the details for the London Oncology Clinic.

DanaMB3

Hi Mary-Anne:My father is
Hi Mary-Anne:

My father is in a similar situation as yours. We are still waiting on a definitive "stage", but most likely the same as your fathers and also at the GE junction (near the stomach). We had a 2nd opinion consultation today with the head of the Esophageal Cancer department at the top cancer hospital in Chicago. In regard to my father being operable vs. inoperable she and the surgeon said this would depend on how much of the cancer has invaded the stomach and this is what we are currently waiting on. This will be determined by an esophageal ultrasound. Either way - she said chemo and radiation are a must and surgery will be determined after the ultrasound.

My point is (and mind you I am very new at all of this cancer stuff) question why they are deeming him inoperable ... and then no matter the answer get a 2nd opinion.

In the meantime, check out this thread from William that he referred me to in my first post. There is a wealth of information.
http://csn.cancer.org/node/207835

oriontj

DanaMB3 said:

Hi Mary-Anne:My father is
Hi Mary-Anne:

My father is in a similar situation as yours. We are still waiting on a definitive "stage", but most likely the same as your fathers and also at the GE junction (near the stomach). We had a 2nd opinion consultation today with the head of the Esophageal Cancer department at the top cancer hospital in Chicago. In regard to my father being operable vs. inoperable she and the surgeon said this would depend on how much of the cancer has invaded the stomach and this is what we are currently waiting on. This will be determined by an esophageal ultrasound. Either way - she said chemo and radiation are a must and surgery will be determined after the ultrasound.

My point is (and mind you I am very new at all of this cancer stuff) question why they are deeming him inoperable ... and then no matter the answer get a 2nd opinion.

In the meantime, check out this thread from William that he referred me to in my first post. There is a wealth of information.
http://csn.cancer.org/node/207835

Did you like Dr. Villifor
We also were up there today around 11am...she told us Tom was inoperable in August 2009 and no doubt still is...the surgeon actually made the decision and he's also top rated.There might be a chance they will still do it but it's a long shot.

Did she mention any clinical trials? We know the one he was on gave him a wonderful year where he was cancer free. it's back now but Dr. Villifor is extra vigilant..she doesn't wait 3 months for another scan and did the endoscope immediately..same cancer and she was armed with another plan for him.

She's very good and knows what she's doing...did you meet Dr. Campbell? We also like him..and usually see the two of them together...

I know you're in good hands Dana...she will aggressively do everything she can to halt your Dad's cancer. That's how she is.

jan

oriontj

DanaMB3 said:

Hi Mary-Anne:My father is
Hi Mary-Anne:

My father is in a similar situation as yours. We are still waiting on a definitive "stage", but most likely the same as your fathers and also at the GE junction (near the stomach). We had a 2nd opinion consultation today with the head of the Esophageal Cancer department at the top cancer hospital in Chicago. In regard to my father being operable vs. inoperable she and the surgeon said this would depend on how much of the cancer has invaded the stomach and this is what we are currently waiting on. This will be determined by an esophageal ultrasound. Either way - she said chemo and radiation are a must and surgery will be determined after the ultrasound.

My point is (and mind you I am very new at all of this cancer stuff) question why they are deeming him inoperable ... and then no matter the answer get a 2nd opinion.

In the meantime, check out this thread from William that he referred me to in my first post. There is a wealth of information.
http://csn.cancer.org/node/207835

Did you like Dr. Villifor
We also were up there today around 11am...she told us Tom was inoperable in August 2009 and no doubt still is...the surgeon actually made the decision and he's also top rated.There might be a chance they will still do it but it's a long shot.

Did she mention any clinical trials? We know the one he was on gave him a wonderful year where he was cancer free. it's back now but Dr. Villifor is extra vigilant..she doesn't wait 3 months for another scan and did the endoscope immediately..same cancer and she was armed with another plan for him.

She's very good and knows what she's doing...did you meet Dr. Campbell? We also like him..and usually see the two of them together...

I know you're in good hands Dana...she will aggressively do everything she can to halt your Dad's cancer. That's how she is.

jan

ArchTB

Second opinion needed!
Dear Mary-Ann,

I am very sorry to hear about your dad's diagnosis. However, like other people in this thread, I would strongly urge you to seek second opinion with regard to the surgery. My husband was staged at T3N1M0 early this month and we are aiming for chemoradiation and surgery treatment. He is 37 years old, and there is no way I am ready to give up on him! Moreover, we have found a lot of cases where chemoradiation alone helped to get rid of cancer entirely. Stage 3 is operatable and given the new approach of treatment prior to surgery, survival rates increased dramatically.

If you do need any help of getting things from the US, please let me know. I would be glad to help. Do not give up and keep on fighting! Wishing you strength and your dad recovery.

Olya

Mary-Anne

ArchTB said:

Second opinion needed!
Dear Mary-Ann,

I am very sorry to hear about your dad's diagnosis. However, like other people in this thread, I would strongly urge you to seek second opinion with regard to the surgery. My husband was staged at T3N1M0 early this month and we are aiming for chemoradiation and surgery treatment. He is 37 years old, and there is no way I am ready to give up on him! Moreover, we have found a lot of cases where chemoradiation alone helped to get rid of cancer entirely. Stage 3 is operatable and given the new approach of treatment prior to surgery, survival rates increased dramatically.

If you do need any help of getting things from the US, please let me know. I would be glad to help. Do not give up and keep on fighting! Wishing you strength and your dad recovery.

Olya

Hi Olya
Thanks so much for your response....... I'm so sorry to hear about your husband - he is FAR too young to be struck with this disease. Please stay in touch as it seems that we are at a similar stage in this journey. I'm going to do my best to get dad a second opinion or pursue the surgery route with his current oncologist. He had his first round of Chemo yesterday. Has your husband begun his Chemo yet? Is your husband getting the minimally invasive esophagectomy?

Stay strong - Mary-Anne xx

ArchTB

Mary-Anne said:

Hi Olya
Thanks so much for your response....... I'm so sorry to hear about your husband - he is FAR too young to be struck with this disease. Please stay in touch as it seems that we are at a similar stage in this journey. I'm going to do my best to get dad a second opinion or pursue the surgery route with his current oncologist. He had his first round of Chemo yesterday. Has your husband begun his Chemo yet? Is your husband getting the minimally invasive esophagectomy?

Stay strong - Mary-Anne xx

Our treatment
Tom is starting his first round of chemo on Monday (jan 3rd). He had very low hemoglobin, which was delaying the procedure. He finally got blood transfusion this week and should be good to start chemo next week. We do not know about the type of surgery yet. As far as I understand that would depend on how he is responding to chemoradiation. I am really hoping we'll qualify for MIE.

All the best to you!

Olya

Mary-Anne

DanaMB3 said:

Hi Mary-Anne:My father is
Hi Mary-Anne:

My father is in a similar situation as yours. We are still waiting on a definitive "stage", but most likely the same as your fathers and also at the GE junction (near the stomach). We had a 2nd opinion consultation today with the head of the Esophageal Cancer department at the top cancer hospital in Chicago. In regard to my father being operable vs. inoperable she and the surgeon said this would depend on how much of the cancer has invaded the stomach and this is what we are currently waiting on. This will be determined by an esophageal ultrasound. Either way - she said chemo and radiation are a must and surgery will be determined after the ultrasound.

My point is (and mind you I am very new at all of this cancer stuff) question why they are deeming him inoperable ... and then no matter the answer get a 2nd opinion.

In the meantime, check out this thread from William that he referred me to in my first post. There is a wealth of information.
http://csn.cancer.org/node/207835

Hi Dana
I'm not sure about why he's been deemed inoperable.... mum just told me it was because of where the tumour is located..... To be honest when they had the appointment with the Oncologist and were given a prognosis of 6-12 months, I think everything became a bit of a haze. I've asked mum to follow this up with the Oncologist at their next appointment.

Thanks for your response....