Dad was just diagnosed yesterday
I have been lurking for the last week hoping that I wouldn't have to make this post but after a trip to the ER for pain control our worst fears were confirmed. The staging work-up is done but we haven't been told the results yet. We are from London, ON and I noticed there is another poster from here, I would love any advice she has. I am a pediatric oncology nurse in Toronto and I am wondering if we should seek out treatment at Princess Margaret instead. My mom has CLL and we were less than pleased with the LRCC with her care so I was wondering how the GI oncologists are.
Comments
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I think
I think Daiseylynn is who you are referring too. She doesn't post as much since loosing her husband, but I feel like she reads regularly and will answer your questions about the Canadian situation as soon as she sees your post. Good look and keep us posted on other issues that may come up. Sam0 -
Hi there,
I am also from
Hi there,
I am also from London On, but I rarely post on here I’m more of a lurker. Daisylynn will probably be much more help than I as well as far more educated on the subject. But for now, I will share with you my experience with our hospital. My mom has Stage 3 EC. To date she has had THE surgery (Dr. Inculet) Great surgeon. My mom loved him which is huge when undergoing such a serious surgery. As far as LRCC we've had our ups and downs. Dr. Sanatanti is her oncologist and he's been pretty good. My biggest complaint with our experience was the waiting in the beginning. It took months to get this ball rolling and when dealing with such an aggressive Cancer on top of all the stress that comes along with not really knowing what to expect. It damn near killed us all. Hindsight is always 20/20 and I would say that overall we are happy with the treatment she has received. All that being said, we don't have family in Toronto, so going there for treatment never came up as an option for us. You however do, so I would suggest looking into both before making a decision.
Wishing you well as your family's journey begins.0 -
introductionAlexM said:Hi there,
I am also from
Hi there,
I am also from London On, but I rarely post on here I’m more of a lurker. Daisylynn will probably be much more help than I as well as far more educated on the subject. But for now, I will share with you my experience with our hospital. My mom has Stage 3 EC. To date she has had THE surgery (Dr. Inculet) Great surgeon. My mom loved him which is huge when undergoing such a serious surgery. As far as LRCC we've had our ups and downs. Dr. Sanatanti is her oncologist and he's been pretty good. My biggest complaint with our experience was the waiting in the beginning. It took months to get this ball rolling and when dealing with such an aggressive Cancer on top of all the stress that comes along with not really knowing what to expect. It damn near killed us all. Hindsight is always 20/20 and I would say that overall we are happy with the treatment she has received. All that being said, we don't have family in Toronto, so going there for treatment never came up as an option for us. You however do, so I would suggest looking into both before making a decision.
Wishing you well as your family's journey begins.
Hi, I just wanted to welcome you although I'm from the U.S. so can't comment on your specific question. I just want you to know that I too am a peds RN. I'm so sorry to hear about your dad and mom. I hope you will find some answers here and yes, Daisylyn will be able to give you some guidance. You'll get a lot of support here. It's a difficult journey with so many questions, so I hope you find comfort here.
All my best,
Cora0 -
london v. toronto
Hi UpsideDown
My hubby and I are in St Thomas ON so he is also being treated at LRCP, same dr's as AlexM
and I feel the same, it is the wait here that is in question, not the drs or the care. My hubby was dx in mid jun and we are now waiting on a surgery date for Jan.
My hubby was already receiving chemo before we even got staging results and I had to ask! Call and find out!
They really are not big on giving info unless you ask.
As for Toronto, we moved from there 5 yrs ago, I wonder if we would have quicker treatment there? I asked my hubby if he wanted to go for 2nd opinion and he is fine with LRCP. Since you are a nurse in toronto you should have a feel for what is best. Once you get the staging info it may be easier to decide.
Julie
wife of Nicholas
dx T2N2M0 mid jun
THE soon I hope0 -
Hi and Welcome....jss2011 said:london v. toronto
Hi UpsideDown
My hubby and I are in St Thomas ON so he is also being treated at LRCP, same dr's as AlexM
and I feel the same, it is the wait here that is in question, not the drs or the care. My hubby was dx in mid jun and we are now waiting on a surgery date for Jan.
My hubby was already receiving chemo before we even got staging results and I had to ask! Call and find out!
They really are not big on giving info unless you ask.
As for Toronto, we moved from there 5 yrs ago, I wonder if we would have quicker treatment there? I asked my hubby if he wanted to go for 2nd opinion and he is fine with LRCP. Since you are a nurse in toronto you should have a feel for what is best. Once you get the staging info it may be easier to decide.
Julie
wife of Nicholas
dx T2N2M0 mid jun
THE soon I hope
So sorry that you find yourself here, but glad that you have chosen to introduce yourself and ask for help. I hope that you will continue to use our knowledge and information to guide you through this new phase in your life.
I'm Chantal, from London also, and my husband Lee's doctor was also Dr Sanitani. Unfortunately we did not have the most positive experience with him. LPRC is a teaching hospital, and we usually only saw residents during our visits. Unfortunately they were not all shining stars, (don't get me wrong, some were fantastic!) Lee had to wait about a month to get the chemo ball rolling, which seems to be about average on this site, so no complaints here about the wait. The chemo nurses were all lovely, friendly and kind, no complaints there either. Once Lee moved to palliative care, the doctor and nurse practitioner we had were terrific as well.
I have no idea what the care is like at other hospitals, so I'm sorry but the only advice that I can give you is this, no matter which hospital you chose or what oncologist you see....
1. Research, research, research..... This site is the absolute best out there for support, guidance and information.
2. Make a list for each appointment, and ask questions, as many as you can think of. Write the answers down as they are speaking to you..... you will forget!!! (trust me) As Julie said they are not big on giving information. You need to ask!!! They did bloodwork on Lee at every appointment and EVERY single time we had to ask them if there was anything notable in it. They never thought to check it!!! Not once..... And trust me, bloodwork is the key to everything. Also, you have a right to access copies of all tests..... they won't want to give them to you, but legally they have to.
3. If you think something is missing from your dad's care plan, fight it. We had to fight tooth and nail for things that seem to be standard care in the USA. (HER2 testing, feeding tube, esophageal stretch etc.) don't let them tell you that your dad does not "need" it. I think that Canada is a lot more frugal with testing and treatments, so if you don't push the issue, you are not going to get it. Our oncologist is a very conservative doctor, happy to treat pain, but not the symptoms. We had cupboards full of pain control medication, but had to fight hard for any actual 'treatment' for the symptoms.
Lee's surgeon, Dr Fortin (who did not actually do any surgery other than the esophageal stretch and a stent) was very informative and caring for the most part. She openly admitted that she also did NOT check his bloodwork before the stent, which caused internal bleeding and unfortunately his death. Had she checked it, she would have seen that his blood was too thin, and would not have done the stent. In her defence however, Lee's liver was all but failed, and his death was inevitable. We had a very high opinion of her before the stent, perhaps it was an isolated event. I do think that she is very knowledgable and kind, but make sure that all the i's are dotted and t's are crossed first.
I am sorry that this is so negative towards the LPRC. We just seemed to have a negative experience all around, and I can't really sugar coat any of it. I hope that if you do stay in London, you are able to get the care you need and deserve for your dad. I often wondered if our care was substandard because Lee was stage ivb, mets to the liver. Maybe they did not think it was worth their attention, since there is very slim chance of survival. The stage 3's (Alex and Julie) seem to have had better care than us. Or maybe I'm just bitter that my beloved husband was taken from me.....
Again, I'm so sorry about your dad, please keep us posted on his staging and treatment. I wish you all the best,
Chantal0 -
Thank you everyone for youDaisylin said:Hi and Welcome....
So sorry that you find yourself here, but glad that you have chosen to introduce yourself and ask for help. I hope that you will continue to use our knowledge and information to guide you through this new phase in your life.
I'm Chantal, from London also, and my husband Lee's doctor was also Dr Sanitani. Unfortunately we did not have the most positive experience with him. LPRC is a teaching hospital, and we usually only saw residents during our visits. Unfortunately they were not all shining stars, (don't get me wrong, some were fantastic!) Lee had to wait about a month to get the chemo ball rolling, which seems to be about average on this site, so no complaints here about the wait. The chemo nurses were all lovely, friendly and kind, no complaints there either. Once Lee moved to palliative care, the doctor and nurse practitioner we had were terrific as well.
I have no idea what the care is like at other hospitals, so I'm sorry but the only advice that I can give you is this, no matter which hospital you chose or what oncologist you see....
1. Research, research, research..... This site is the absolute best out there for support, guidance and information.
2. Make a list for each appointment, and ask questions, as many as you can think of. Write the answers down as they are speaking to you..... you will forget!!! (trust me) As Julie said they are not big on giving information. You need to ask!!! They did bloodwork on Lee at every appointment and EVERY single time we had to ask them if there was anything notable in it. They never thought to check it!!! Not once..... And trust me, bloodwork is the key to everything. Also, you have a right to access copies of all tests..... they won't want to give them to you, but legally they have to.
3. If you think something is missing from your dad's care plan, fight it. We had to fight tooth and nail for things that seem to be standard care in the USA. (HER2 testing, feeding tube, esophageal stretch etc.) don't let them tell you that your dad does not "need" it. I think that Canada is a lot more frugal with testing and treatments, so if you don't push the issue, you are not going to get it. Our oncologist is a very conservative doctor, happy to treat pain, but not the symptoms. We had cupboards full of pain control medication, but had to fight hard for any actual 'treatment' for the symptoms.
Lee's surgeon, Dr Fortin (who did not actually do any surgery other than the esophageal stretch and a stent) was very informative and caring for the most part. She openly admitted that she also did NOT check his bloodwork before the stent, which caused internal bleeding and unfortunately his death. Had she checked it, she would have seen that his blood was too thin, and would not have done the stent. In her defence however, Lee's liver was all but failed, and his death was inevitable. We had a very high opinion of her before the stent, perhaps it was an isolated event. I do think that she is very knowledgable and kind, but make sure that all the i's are dotted and t's are crossed first.
I am sorry that this is so negative towards the LPRC. We just seemed to have a negative experience all around, and I can't really sugar coat any of it. I hope that if you do stay in London, you are able to get the care you need and deserve for your dad. I often wondered if our care was substandard because Lee was stage ivb, mets to the liver. Maybe they did not think it was worth their attention, since there is very slim chance of survival. The stage 3's (Alex and Julie) seem to have had better care than us. Or maybe I'm just bitter that my beloved husband was taken from me.....
Again, I'm so sorry about your dad, please keep us posted on his staging and treatment. I wish you all the best,
Chantal
Thank you everyone for you kind words and advice. We are stuck in limbo for a few more days due to the holiday but hopefully I will have more information next week0 -
The results from the CT (itUpsideDown said:Thank you everyone for you
Thank you everyone for you kind words and advice. We are stuck in limbo for a few more days due to the holiday but hopefully I will have more information next week
The results from the CT (it wasn't a PET - I don't know why they bothered with a plain CT but thats a frustration for another day) show something suspicious on the liver
The referral has now been made to the cancer clinic and we are hoping to hear back later this week. The waiting is soooooo frustrating! Coming from the paediatric world I am used to getting things done in a matter of hours, days at the most. We are now almost 3 weeks from the scope that identified a problem! 0 -
CTUpsideDown said:The results from the CT (it
The results from the CT (it wasn't a PET - I don't know why they bothered with a plain CT but thats a frustration for another day) show something suspicious on the liver The referral has now been made to the cancer clinic and we are hoping to hear back later this week. The waiting is soooooo frustrating! Coming from the paediatric world I am used to getting things done in a matter of hours, days at the most. We are now almost 3 weeks from the scope that identified a problem!
We have been in your shoes as far as the waiting soooooooo long. We are in the U.S. and my husband was diagnosed with esophageal cancer on November 21. Just today (Jan. 4) he has received his 1st radiation treatment. Chemo will begin tomorrow.
The wait has been most difficult, but it looks like you are doing your homework which is what I did while we were in the hurry up and wait mode. I believe the holidays made for a longer wait than usual for us - although right off the bat the gastroentrologist sent us to the wrong doctor at Univ of Mich - which I felt was wrong and began making phone calls and it turned out to be wrong and that of course delayed things even another few days. Then we had the Thanksgiving, Christmas and New Year to deal with.
Don had the barium swallow test, followed by a CT scan followed by a PET scan, cardiologist clearance for treatment/surgery, needed to meet with both radiation oncologist and chemo oncologist prior to being 'measured and tattooed' for radiation.
It is a lengthy process to start for some of us and the waiting is the hardest. I'm sure your case will move along a bit quicker than ours just because the holidays are out of the way now.
Please keep us posted as to your progress and ask any questions, the pioneers as I call them, on this site, are chocked full of information and suggestions. Glad you found us.
Judy
Husband Don DX T3N1M0 (Stage 3) 11-21-2011
Rad/Chemo begin 1/4/20120 -
DIAGNOSISJReed said:CT
We have been in your shoes as far as the waiting soooooooo long. We are in the U.S. and my husband was diagnosed with esophageal cancer on November 21. Just today (Jan. 4) he has received his 1st radiation treatment. Chemo will begin tomorrow.
The wait has been most difficult, but it looks like you are doing your homework which is what I did while we were in the hurry up and wait mode. I believe the holidays made for a longer wait than usual for us - although right off the bat the gastroentrologist sent us to the wrong doctor at Univ of Mich - which I felt was wrong and began making phone calls and it turned out to be wrong and that of course delayed things even another few days. Then we had the Thanksgiving, Christmas and New Year to deal with.
Don had the barium swallow test, followed by a CT scan followed by a PET scan, cardiologist clearance for treatment/surgery, needed to meet with both radiation oncologist and chemo oncologist prior to being 'measured and tattooed' for radiation.
It is a lengthy process to start for some of us and the waiting is the hardest. I'm sure your case will move along a bit quicker than ours just because the holidays are out of the way now.
Please keep us posted as to your progress and ask any questions, the pioneers as I call them, on this site, are chocked full of information and suggestions. Glad you found us.
Judy
Husband Don DX T3N1M0 (Stage 3) 11-21-2011
Rad/Chemo begin 1/4/2012
So sorry to hear your news about your mother and father. This site is a wealth of information and support. I am a nurse also though in Critical Care and when my sister was diagnosed there was so much i was unaware of. Glad you found this site.
Paula0 -
CT vs PETPMT said:DIAGNOSIS
So sorry to hear your news about your mother and father. This site is a wealth of information and support. I am a nurse also though in Critical Care and when my sister was diagnosed there was so much i was unaware of. Glad you found this site.
Paula
Hi, so sorry about your dad's possible liver involvement. Lee (my hubby) never had a PET, only CTs. Again, what seems to be common practice in the States is not always used here. Very frustrating!!! However, in Lee's case, the CT showed liver mets as well, and they said that further testing is not necessary, since he was already diagnosed as a ivb. The treatment would remain the same, even if they found more involvement than the liver. Surgery is not an option, only palliative chemo and possibly radiation. (Lee was not a candidate for radiation, so he only did chemo)
There have been many discussions here on the Canadian "free" health care vs the American health care, and I'm not going to get into that one again..... however, sometimes we get what we pay for. I'm sure as a medical person, you see this all the time, budget restrictions, cutbacks and in the end the patient suffers. I think this is the reason they avoid the PET, it's much more expensive.
You may want to research Theresphere treatment for the liver involvement. We looked into it, and it's only available in (forgive me if my memory is a bit off) Vancouver and Montreal. Lee decided not to pursue it, but many here highly recommend it. We asked our oc about it, and he had no clue what we were talking about, so if you have the same oncologist that we did, you will have to research it and decide on your own. (more frustrations!) I believe it was covered by OHIP though. Have you decided if you are going to use London or go to Toronto? I think that if you choose to see a doc in Toronto, they can give the orders to the London Centre, and they will use the prescribed treatment from there. I could be wrong, but in the States they do it that way. If they do it that way, the travelling would be much lighter for your dad.
Anyways, please keep us posted, I hope that the wonderful people here can offer you as much guidance and support as they gave me.
Be well,
Chantal0 -
Admitted
So on advice of some friends, my mom took my dad back to hospital in London and the thoracic surgeons admitted him to get some of the tests done sooner and they will also do an esophageal dilation. They said the spot on the CT could be just a cyst but they are very worried that all of the pain he his having could be bone mets. The PET can't happen until at least next week but hopefully we will have some answers soon.0 -
Another AdmissionUpsideDown said:Admitted
So on advice of some friends, my mom took my dad back to hospital in London and the thoracic surgeons admitted him to get some of the tests done sooner and they will also do an esophageal dilation. They said the spot on the CT could be just a cyst but they are very worried that all of the pain he his having could be bone mets. The PET can't happen until at least next week but hopefully we will have some answers soon.
Well he is back in hospital again, this time for a completely unrelated problem! He had a large GI bleed as a result of diverticulosis, can't the guy catch a break!? The PET was done on Wednesday and after getting the report it looks like he may only be stage 3 and not the dreaded 4 that we were expecting. I want to be relieved but until I hear his team say he is officially stage 3, I just can't relax.
I have a question for Daisy, did you guys have more contact with the thoracic team or the oncology team? Right now I feel that Dr Fortin and the thoracic team are driving the care, we haven't seen or heard from oncology yet.0 -
our doctor timeline....UpsideDown said:Another Admission
Well he is back in hospital again, this time for a completely unrelated problem! He had a large GI bleed as a result of diverticulosis, can't the guy catch a break!? The PET was done on Wednesday and after getting the report it looks like he may only be stage 3 and not the dreaded 4 that we were expecting. I want to be relieved but until I hear his team say he is officially stage 3, I just can't relax.
I have a question for Daisy, did you guys have more contact with the thoracic team or the oncology team? Right now I feel that Dr Fortin and the thoracic team are driving the care, we haven't seen or heard from oncology yet.
Hi, and once again, sorry that your poor dad has yet another complication. You are right, sometimes we just can't catch a break...... Hope though, that he is truly a stage 3, that would be great!
As far as Lee's schedule of appointments, He met with Dr Adams for the endoscopy on January 13 and we were given the partial bad news, still had no idea about the staging or anything, just that is was the 'c' word. Lee only say Dr Fortin one time, (at the beginning our our journey anyways), on January 18th. She is the one who read the CT scans to us, and gave us the horrible news. We found her to be incredibly helpful and informative. She spent about 3 hours with us, explaining EVERYTHING.....
On January 26th, (a week later) we met with Dr Dar (radiation) and he sent us away, saying that radiation would not help. February 2nd had us at Dr Sanitani's office (oncology) and we were given the plan of action. He began chemo February 25th. We could have started chemo earlier, but Lee and I had a trip to Vancouver pending, and he wanted to be able to enjoy it without any chemo side effects. All of our contact up until the end stages were with Dr Sanitani and his team of nurses and residents. Be wary of some of the residents, we had lots of problems there, with information and knowledge. Make sure they check the blood work EVERY TIME.... we had to ask every time we went in, no one ever thought to do it.. don't get me started there ;( We rarely say Sanitani, only if the resident was over his/her head with my zillion questions!!
Fast forward 9 months, we saw Dr Fortin again for the esophageal stretch, and a week later for the esophageal stent. That was the only contact we had with her during our journey.
It does seem like you have been waiting a long time to see oncology..... perhaps you should question why. Maybe they are waiting for accurate staging? Lee was rushed to all his scans and ultrasounds, often the doctor would refer him for a test and he would be called for his appointment the next day. He was staged within 3 days of the initial endoscopy. We did not have to wait more than a day or 2 for any of these tests. (some of them were within hours of the doctor requesting them) I have complained a few times here about his care, but I have no issue whatsoever about the timeline, and speedy delivery that we saw during the staging process.
Hope that helps a bit, i hope they can get a move on, the waiting is so scary.
Be well,
Chantal0 -
Kick in the stomachDaisylin said:our doctor timeline....
Hi, and once again, sorry that your poor dad has yet another complication. You are right, sometimes we just can't catch a break...... Hope though, that he is truly a stage 3, that would be great!
As far as Lee's schedule of appointments, He met with Dr Adams for the endoscopy on January 13 and we were given the partial bad news, still had no idea about the staging or anything, just that is was the 'c' word. Lee only say Dr Fortin one time, (at the beginning our our journey anyways), on January 18th. She is the one who read the CT scans to us, and gave us the horrible news. We found her to be incredibly helpful and informative. She spent about 3 hours with us, explaining EVERYTHING.....
On January 26th, (a week later) we met with Dr Dar (radiation) and he sent us away, saying that radiation would not help. February 2nd had us at Dr Sanitani's office (oncology) and we were given the plan of action. He began chemo February 25th. We could have started chemo earlier, but Lee and I had a trip to Vancouver pending, and he wanted to be able to enjoy it without any chemo side effects. All of our contact up until the end stages were with Dr Sanitani and his team of nurses and residents. Be wary of some of the residents, we had lots of problems there, with information and knowledge. Make sure they check the blood work EVERY TIME.... we had to ask every time we went in, no one ever thought to do it.. don't get me started there ;( We rarely say Sanitani, only if the resident was over his/her head with my zillion questions!!
Fast forward 9 months, we saw Dr Fortin again for the esophageal stretch, and a week later for the esophageal stent. That was the only contact we had with her during our journey.
It does seem like you have been waiting a long time to see oncology..... perhaps you should question why. Maybe they are waiting for accurate staging? Lee was rushed to all his scans and ultrasounds, often the doctor would refer him for a test and he would be called for his appointment the next day. He was staged within 3 days of the initial endoscopy. We did not have to wait more than a day or 2 for any of these tests. (some of them were within hours of the doctor requesting them) I have complained a few times here about his care, but I have no issue whatsoever about the timeline, and speedy delivery that we saw during the staging process.
Hope that helps a bit, i hope they can get a move on, the waiting is so scary.
Be well,
Chantal
Well we met with Dr Fortin (I love her, and wish she was going to be a bigger part of our journey) again this weekend and while she confirmed that he was only stage 3, he is a probable inoperable stage 3 as all of the effected lymph nodes are surrounding the descending aorta and the combination of blood vessels and nerves in the area mean that it would be very high risk. We see the radiation and medical oncologists this week to decide whether or not to move forward with treatment. He has been assigned to Dr Sanitani as well, but I can't remember the radiation oncologists name.
I can also understand your frustration with residents, the one that discharged my dad this weekend was useless! If it wasn't for my nursing background and connections she would have sent him home with NO pain control!0 -
Hi upside down,UpsideDown said:Kick in the stomach
Well we met with Dr Fortin (I love her, and wish she was going to be a bigger part of our journey) again this weekend and while she confirmed that he was only stage 3, he is a probable inoperable stage 3 as all of the effected lymph nodes are surrounding the descending aorta and the combination of blood vessels and nerves in the area mean that it would be very high risk. We see the radiation and medical oncologists this week to decide whether or not to move forward with treatment. He has been assigned to Dr Sanitani as well, but I can't remember the radiation oncologists name.
I can also understand your frustration with residents, the one that discharged my dad this weekend was useless! If it wasn't for my nursing background and connections she would have sent him home with NO pain control!
Sorry that you got such terrible news today. That is a kick in the stomach.
We also loved Dr. Fortin. (so much that we were going to get a puppy when Lee "beat the cancer" and name her Delilah - her first name) Even after the botched stent job, she had tears in her eyes when she told me the bad news. We also wished that we had more contact with her throughout. We found her to be very compassionate, caring, kind and honest.
If your rad doc is Dr Dar, that's who we had seen..... he is supposed to be top notch, but he is very hard to understand due to a very strong accent. I would bring a recorder of some kind so you can replay it, or be sure to not leave until you understand exactly what he's saying. He did not treat Lee, due to the size of the tumours, but we heard that he is the best, and a leading radio-doc. He did seem very kind, we ran into him in the halls of the centre a few times, and he remembered us, and stopped to see how Lee was doing.
As far as the oc, I really can't state strongly enough how important it will be for you to do your homework, and ask as many questions as you can think of. He is not very generous with information, you need to push, then push harder...... You will not need to worry about pain control, we had cupboards full, but had to beg for actual 'treatment of the cause' medications. (as opposed to treating the symptoms) For example, he would not give Lee a feeding tube for months, even though he was losing weight drastically, and vomiting every time he tried to eat. instead, he just wanted him to take anti nauseants and ppi's , which we repeatedly told him were not working. Finally we told him that if he did not get a feeding tube, we were stopping chemo. That got the ball rolling immediately. Don't be afraid to fight for what your dad wants.
Anyways, please keep us posted, if I can be of any help to you regarding the doctors or team, feel free to ask. Again, so sorry for dad's inoperable status.... that really sucks!
Also, if you don't mind, could you share your first name with us? I'd rather have a name than address you as upside down
Be well,
Chantal
wife of Lee
deceased Nov 8, 20110
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