Concerned Daughter

AlexM

Hi Everyone,

I've been reading the post for a couple days now debating on opening an account and its become quite clear to me that, this is the place I want to be right now.
On April 8th my mother was diagnosed with Kidney Cancer (renal cell carcinoma) After a few test it was settled Stage one "A walk in the park" the doctor said. The kidney was to be removed No chemo or radiation she'd be back to normal in no time. During her pre-op a mass was found in her esophagus. She has been complaining of what she thought was heart burn for about a year now. Swallowing has started to become an issue and her weight has dropped what I would call dramatically. So today July 12th we will find out what "stage" we are dealing with. Almost three months since the origianl diagnosis of the cancer. I am in Canada but feel that this wait time is outrageous and wonder if it was their mother would they be moving faster?. At this point they have suggested that it may be two different Cancers that we are dealing with, which apparently is a good thing meaning neither one of them have metastasized. What a rollercoster this has been and its not even hardly begun. Has anyone heard or know of EC that metastasized to the kindney?. Looking for any information I can get at this point as I find the basic "google" search nothing but gloom and doom and that is certainly not what we're looking for at this point.

Thank you

Daisylin

Welcome
Hi and welcome from a fellow Canadian (London, Ontario) You have found a great site, and hope you find as much valuable information as I have here. My husband is stage IVB, mets to the liver and some lymph nodes, chemo is his only option for treatment. As far as EC with mets to the kidney, I honestly don't know for sure, but it seems like there are many on here with mets all over the body. (bones, brain, liver, lungs etc) I hope your mom is not one of them.

I don't know where in Canada you are, but here in London, we have a wonderful cancer centre, and they have been very efficient. I do find that they have not necessarily been telling us all our options, so this site has been invaluable for giving us things to press the doctor about. I don't know if our doc is just conservative, or if OHIP is just not all it's cracked up to be. What I do know is that you will find lots of support and encouragement here, and links to helpful websites and a wealth of knowledge.

One thing, being Canadian, if your health care does not cover some of the meds your mom may need, often the drug companies will cover the cost. (our doc almost did not tell us about that, and my husband ended up being able to take his treatments orally instead of having an iv port put in) All it took was a simple phone call, and it was all taken care of. OHIP would have covered the full cost of the drug, but only in iv form..... the pill form is so much more convenient and he saved the unpleasantness of having a port put in. You need to do your research, and always be one step ahead of the doctors.

I hope you get the best possible news for your Mother. Cancer is a scary beast, and the more armed you are with information the better off you'll be as you travel the Canadian health care system.

I don't claim to know the canadian health care system well, but if I can help in any way, please just ask. As far as I know I'm the only Canadian on the EC group.

Take care,
Chantal

AlexM

Daisylin said:

Welcome
Hi and welcome from a fellow Canadian (London, Ontario) You have found a great site, and hope you find as much valuable information as I have here. My husband is stage IVB, mets to the liver and some lymph nodes, chemo is his only option for treatment. As far as EC with mets to the kidney, I honestly don't know for sure, but it seems like there are many on here with mets all over the body. (bones, brain, liver, lungs etc) I hope your mom is not one of them.

I don't know where in Canada you are, but here in London, we have a wonderful cancer centre, and they have been very efficient. I do find that they have not necessarily been telling us all our options, so this site has been invaluable for giving us things to press the doctor about. I don't know if our doc is just conservative, or if OHIP is just not all it's cracked up to be. What I do know is that you will find lots of support and encouragement here, and links to helpful websites and a wealth of knowledge.

One thing, being Canadian, if your health care does not cover some of the meds your mom may need, often the drug companies will cover the cost. (our doc almost did not tell us about that, and my husband ended up being able to take his treatments orally instead of having an iv port put in) All it took was a simple phone call, and it was all taken care of. OHIP would have covered the full cost of the drug, but only in iv form..... the pill form is so much more convenient and he saved the unpleasantness of having a port put in. You need to do your research, and always be one step ahead of the doctors.

I hope you get the best possible news for your Mother. Cancer is a scary beast, and the more armed you are with information the better off you'll be as you travel the Canadian health care system.

I don't claim to know the canadian health care system well, but if I can help in any way, please just ask. As far as I know I'm the only Canadian on the EC group.

Take care,
Chantal

Hi Chantal,
So happy you
Hi Chantal,

So happy you responded. I was reading your posts yesterday because I noticed you are also from Canada. We are also in London On. My mom is at the Cancer Center as we speak for the first time. She was anxious to get there for the support of other people dealing with similar battles. Looking forward to gaining more knowledge so that I can help her in any way that I can.

May I ask who your doctor is?

We have seen many so far the latest being a thoratic surgeon who seemed be good, and got this ball rolling for us.

Small world.

Joel C

AlexM said:

Hi Chantal,
So happy you
Hi Chantal,

So happy you responded. I was reading your posts yesterday because I noticed you are also from Canada. We are also in London On. My mom is at the Cancer Center as we speak for the first time. She was anxious to get there for the support of other people dealing with similar battles. Looking forward to gaining more knowledge so that I can help her in any way that I can.

May I ask who your doctor is?

We have seen many so far the latest being a thoratic surgeon who seemed be good, and got this ball rolling for us.

Small world.

Hi Alex,
When I was going
Hi Alex,
When I was going thru my staging (2B, T2N1M0) the doctors saw on the PET/CT scans what looked like a tumor in my adrenal gland. An additional CT scan revealed this was not a tumor but an adenoma and nothing to worry about. My doctors told me before the second CT scan that the chance that the EC had metastasized to the adrenal gland or kidney was very low. I hope in your mom’s case this is two separate cancers, from my experience this may well be that case.
Good luck,
Joel

Daisylin

AlexM said:

Hi Chantal,
So happy you
Hi Chantal,

So happy you responded. I was reading your posts yesterday because I noticed you are also from Canada. We are also in London On. My mom is at the Cancer Center as we speak for the first time. She was anxious to get there for the support of other people dealing with similar battles. Looking forward to gaining more knowledge so that I can help her in any way that I can.

May I ask who your doctor is?

We have seen many so far the latest being a thoratic surgeon who seemed be good, and got this ball rolling for us.

Small world.

small world got smaller
That is very funny, we actually were also at the cancer centre today. Our oncology doctor is Dr Sanitani, although today we saw someone different (forgot his name) who was very helpful and really clarified our concerns. When we were first going through staging, we saw a thoracic surgeon, Dr Fortin, and she was FANTASTIC. Unfortunately he is not able to have surgery, but if she's your doctor, you are very lucky! I don't know about any other surgeons in london, but supposedly Dr Fortin is a renown specialist in EC. The radiology oncologist we saw was Dr Dar, he seemed to rush us out the door, but that could be because Lee is not a candidate for radiation either.

If your mom has chemo, the nurses are spectacular, very friendly and welcoming. She will feel very comforted there. If you have not been to the centre, it's very nicely laid out and easy to find your way around.

So, hope your mom's appointment went well today! Please keep us posted, I'm sure you'll be getting welcomed by many of the other members here as well.
Chantal

Unknown

This comment has been removed by the Moderator

Daisylin

unknown said:

This comment has been removed by the Moderator

our wait time
Hi Alex, just looking back at my calendar..... Unfortunately I don't have the information about Lee's appointment with our family doc, but he was scheduled for;

-blood work January 10,
-an endoscopy on Thursday Jan 13.
-We got the results of the EC right away, and were rushed to see Doctor Fortin (surgeon) who gave us the staging of IVB on Tuesday January 18 (only 3 working days later)
-I have absolutely no idea how she discovered the liver mets, I have no records of any other tests other than the endoscopy. My brain was, and still is total mush.... I vaguely remember going for x-rays and a CT somewhere in there that I forgot to write in my calendar. It must have been the next day after the endoscopy. I do remember seeing the words "URGENT" on the file, and let me tell you that scared the crap out of me!
-From there, we saw the radiology doc on Jan 26,
-had more testing on the 28th and
-saw the Chemo doc on Feb 2.
-CT scan Feb 4th and
-began chemo on Feb 25th.

So basically a month and a half from testing to treatment.

I don't know how that compares to the states, but I felt that we had good treatment times, although the 3 weeks from his last test to the chemo start seemed an eternity. As scared as we were to venture into the unknown, we just wanted to get the show on the road.

At our appointment yesterday, we were encouraged to resume our chemo break until another CT scan is done in 3 weeks time. The doctor was very open to answering all my questions, and even commented that "I had a lot of really good questions". Well, that's all thanks to the fine folks here! We kept him talking for over an hour, and we left satisfied that we are on the right track. Alex, if you are the one to accompany your mom to her appointments, make sure you bring a notepad and pens. Have a list of questions with spaces to write in your answers. Trust me, as soon as you walk out of the building your brain goes into overload and you will forget half of what the've told you. You cannot ask too many questions, and there are no dumb questions! The doc we saw yesterday actually seemed impressed with all my queries and encouraged me to keep researching and chatting with all of you. Don't let them rush you!!!! We waited over an hour and a half past our appointment time yesterday to see him, so that tells me that they are willing to spend as much time with everyone as needed. So far, other than the radiation oncologist who did rush us, we have had nothing but positive experiences with the docs and nurses there. They have been very patient with my million questions. (that's just my experience of course, I'm sure others would not agree!) I think it all boils down to how much you ask them. If you sit there and nod your head and don't ask anything, they won't tell you everything. If you push them for details and direction, they'll give it to you. I really wish I remembered the name of the doc we saw yesterday. He was fantastic! I don't know if maybe he is an intern or something, but man he knew his stuff, was friendly and patient.

Again, hope Mom's tests give you the best possible results!
Chantal

TerryV

Daisylin said:

our wait time
Hi Alex, just looking back at my calendar..... Unfortunately I don't have the information about Lee's appointment with our family doc, but he was scheduled for;

-blood work January 10,
-an endoscopy on Thursday Jan 13.
-We got the results of the EC right away, and were rushed to see Doctor Fortin (surgeon) who gave us the staging of IVB on Tuesday January 18 (only 3 working days later)
-I have absolutely no idea how she discovered the liver mets, I have no records of any other tests other than the endoscopy. My brain was, and still is total mush.... I vaguely remember going for x-rays and a CT somewhere in there that I forgot to write in my calendar. It must have been the next day after the endoscopy. I do remember seeing the words "URGENT" on the file, and let me tell you that scared the crap out of me!
-From there, we saw the radiology doc on Jan 26,
-had more testing on the 28th and
-saw the Chemo doc on Feb 2.
-CT scan Feb 4th and
-began chemo on Feb 25th.

So basically a month and a half from testing to treatment.

I don't know how that compares to the states, but I felt that we had good treatment times, although the 3 weeks from his last test to the chemo start seemed an eternity. As scared as we were to venture into the unknown, we just wanted to get the show on the road.

At our appointment yesterday, we were encouraged to resume our chemo break until another CT scan is done in 3 weeks time. The doctor was very open to answering all my questions, and even commented that "I had a lot of really good questions". Well, that's all thanks to the fine folks here! We kept him talking for over an hour, and we left satisfied that we are on the right track. Alex, if you are the one to accompany your mom to her appointments, make sure you bring a notepad and pens. Have a list of questions with spaces to write in your answers. Trust me, as soon as you walk out of the building your brain goes into overload and you will forget half of what the've told you. You cannot ask too many questions, and there are no dumb questions! The doc we saw yesterday actually seemed impressed with all my queries and encouraged me to keep researching and chatting with all of you. Don't let them rush you!!!! We waited over an hour and a half past our appointment time yesterday to see him, so that tells me that they are willing to spend as much time with everyone as needed. So far, other than the radiation oncologist who did rush us, we have had nothing but positive experiences with the docs and nurses there. They have been very patient with my million questions. (that's just my experience of course, I'm sure others would not agree!) I think it all boils down to how much you ask them. If you sit there and nod your head and don't ask anything, they won't tell you everything. If you push them for details and direction, they'll give it to you. I really wish I remembered the name of the doc we saw yesterday. He was fantastic! I don't know if maybe he is an intern or something, but man he knew his stuff, was friendly and patient.

Again, hope Mom's tests give you the best possible results!
Chantal

Commenting on time from diagnosis to treatment
Chantal,

Our experience here in the States was very similiar from diagnosis to treatment. My husband had his endoscope on 05/19, 05/24 for CT, 06/13 for EUS & PET, 06/14 for Medi-port & J-Tube placement,radiation began on 06/20, and 1st chemo on 06/27.

My memory of the dates for the CT and EUS/PET may be off. The other dates are accurate.

Best wishes to all for a successful journey through and beyond EC!

AlexM

Daisylin said:

our wait time
Hi Alex, just looking back at my calendar..... Unfortunately I don't have the information about Lee's appointment with our family doc, but he was scheduled for;

-blood work January 10,
-an endoscopy on Thursday Jan 13.
-We got the results of the EC right away, and were rushed to see Doctor Fortin (surgeon) who gave us the staging of IVB on Tuesday January 18 (only 3 working days later)
-I have absolutely no idea how she discovered the liver mets, I have no records of any other tests other than the endoscopy. My brain was, and still is total mush.... I vaguely remember going for x-rays and a CT somewhere in there that I forgot to write in my calendar. It must have been the next day after the endoscopy. I do remember seeing the words "URGENT" on the file, and let me tell you that scared the crap out of me!
-From there, we saw the radiology doc on Jan 26,
-had more testing on the 28th and
-saw the Chemo doc on Feb 2.
-CT scan Feb 4th and
-began chemo on Feb 25th.

So basically a month and a half from testing to treatment.

I don't know how that compares to the states, but I felt that we had good treatment times, although the 3 weeks from his last test to the chemo start seemed an eternity. As scared as we were to venture into the unknown, we just wanted to get the show on the road.

At our appointment yesterday, we were encouraged to resume our chemo break until another CT scan is done in 3 weeks time. The doctor was very open to answering all my questions, and even commented that "I had a lot of really good questions". Well, that's all thanks to the fine folks here! We kept him talking for over an hour, and we left satisfied that we are on the right track. Alex, if you are the one to accompany your mom to her appointments, make sure you bring a notepad and pens. Have a list of questions with spaces to write in your answers. Trust me, as soon as you walk out of the building your brain goes into overload and you will forget half of what the've told you. You cannot ask too many questions, and there are no dumb questions! The doc we saw yesterday actually seemed impressed with all my queries and encouraged me to keep researching and chatting with all of you. Don't let them rush you!!!! We waited over an hour and a half past our appointment time yesterday to see him, so that tells me that they are willing to spend as much time with everyone as needed. So far, other than the radiation oncologist who did rush us, we have had nothing but positive experiences with the docs and nurses there. They have been very patient with my million questions. (that's just my experience of course, I'm sure others would not agree!) I think it all boils down to how much you ask them. If you sit there and nod your head and don't ask anything, they won't tell you everything. If you push them for details and direction, they'll give it to you. I really wish I remembered the name of the doc we saw yesterday. He was fantastic! I don't know if maybe he is an intern or something, but man he knew his stuff, was friendly and patient.

Again, hope Mom's tests give you the best possible results!
Chantal

Thank you!
Thank you everyone for responding with your information and support.

I hope that I haven't given the impression that my mother has not been proactive in this journey thus far. She really has tried. Numerous calls to the doctors often without so much as a phone call back. Chantal I'm so glad this has not been the case for your husband.

However I do have to say that since getting to Vic, meeting with the Thoratic Surgeon and going to the Cancer Clinc things seem to be speeding up (thankfully).
Yesterday however many questions still left unanswered. Unforunately the results from the PET scan are still not in so the "stage" has yet to be determined. However the doctor did say that "Unofficially, everything looks good." I had to laugh...Unofficially thank you?. In our experience so far its best to leave the unoffical opinions unsaid until they are sure. All that bitterness aside. She came out of it feeling good. Better than she thought she was going to. Thats all that matters to me today.

They are still thinking that the two cancers are unrelated which he said it the cause for some of the delay. I believe he worded it "I understand this is new to you, but it is also new to us." I take from that they don't know what to do with her.

She has decided that next week she is not leaving without ALL of the answers. Stage, Treatment, Dates everything. "They'll have to call security to get me out of there" And if thats the case I'll be there right beside her.

Warm, Thoughts and Prayers to all of you!

Oh ya...How do I see my private messages? lol

-Newbie

Unknown

AlexM said:

Thank you!
Thank you everyone for responding with your information and support.

I hope that I haven't given the impression that my mother has not been proactive in this journey thus far. She really has tried. Numerous calls to the doctors often without so much as a phone call back. Chantal I'm so glad this has not been the case for your husband.

However I do have to say that since getting to Vic, meeting with the Thoratic Surgeon and going to the Cancer Clinc things seem to be speeding up (thankfully).
Yesterday however many questions still left unanswered. Unforunately the results from the PET scan are still not in so the "stage" has yet to be determined. However the doctor did say that "Unofficially, everything looks good." I had to laugh...Unofficially thank you?. In our experience so far its best to leave the unoffical opinions unsaid until they are sure. All that bitterness aside. She came out of it feeling good. Better than she thought she was going to. Thats all that matters to me today.

They are still thinking that the two cancers are unrelated which he said it the cause for some of the delay. I believe he worded it "I understand this is new to you, but it is also new to us." I take from that they don't know what to do with her.

She has decided that next week she is not leaving without ALL of the answers. Stage, Treatment, Dates everything. "They'll have to call security to get me out of there" And if thats the case I'll be there right beside her.

Warm, Thoughts and Prayers to all of you!

Oh ya...How do I see my private messages? lol

-Newbie

This comment has been removed by the Moderator

Daisylin

AlexM said:

Thank you!
Thank you everyone for responding with your information and support.

I hope that I haven't given the impression that my mother has not been proactive in this journey thus far. She really has tried. Numerous calls to the doctors often without so much as a phone call back. Chantal I'm so glad this has not been the case for your husband.

However I do have to say that since getting to Vic, meeting with the Thoratic Surgeon and going to the Cancer Clinc things seem to be speeding up (thankfully).
Yesterday however many questions still left unanswered. Unforunately the results from the PET scan are still not in so the "stage" has yet to be determined. However the doctor did say that "Unofficially, everything looks good." I had to laugh...Unofficially thank you?. In our experience so far its best to leave the unoffical opinions unsaid until they are sure. All that bitterness aside. She came out of it feeling good. Better than she thought she was going to. Thats all that matters to me today.

They are still thinking that the two cancers are unrelated which he said it the cause for some of the delay. I believe he worded it "I understand this is new to you, but it is also new to us." I take from that they don't know what to do with her.

She has decided that next week she is not leaving without ALL of the answers. Stage, Treatment, Dates everything. "They'll have to call security to get me out of there" And if thats the case I'll be there right beside her.

Warm, Thoughts and Prayers to all of you!

Oh ya...How do I see my private messages? lol

-Newbie

Pretty easy to send a
Pretty easy to send a private message.

click on CSN email at top left of page
click (not sure the exact wording) "write a new message"
type in the person's username for example if I were to send you a message I would type in AlexM , or if the person is on your friends list, just choose that name from the drop down menu located beside the space provided for typing the username. From there just type your message and press the send button.

To see your messages, same thing, click on CSM email at top of page, the sender's username will be there, just click on it and voila, your message. There is a reply button there if you wish to send the person a message back.

From that point, the receiver of your message will be alerted upon signing in. A green bar will come up on the top of the page saying you have a new message. Same is true if someone has added you as a friend.

Also, something I just found out, if there is a person who you want to read more of their postings, type in their username into the search window, which you will see at the top right of the discussion pages. It's not very accurate, and you won't likely be able to see all the person's postings, but it will give you some, and that may help. For example, I am more interested in reading posts from stage IVB persons, so I would type in their user names, as many of the issues they face are similar to my husband's.

Also, one last thing, when you are posting a message on the board, only click 'post comment' once. Sometimes it's pretty slow to post and if you get impatient and double click, it will post it twice. You may want to copy your posts before sending them as well, as sometimes they will get lost in space. Pretty frustrating to type away for 15 minutes, and lose it all!

Cheers!
Chantal

Daisylin

Daisylin said:

Pretty easy to send a
Pretty easy to send a private message.

click on CSN email at top left of page
click (not sure the exact wording) "write a new message"
type in the person's username for example if I were to send you a message I would type in AlexM , or if the person is on your friends list, just choose that name from the drop down menu located beside the space provided for typing the username. From there just type your message and press the send button.

To see your messages, same thing, click on CSM email at top of page, the sender's username will be there, just click on it and voila, your message. There is a reply button there if you wish to send the person a message back.

From that point, the receiver of your message will be alerted upon signing in. A green bar will come up on the top of the page saying you have a new message. Same is true if someone has added you as a friend.

Also, something I just found out, if there is a person who you want to read more of their postings, type in their username into the search window, which you will see at the top right of the discussion pages. It's not very accurate, and you won't likely be able to see all the person's postings, but it will give you some, and that may help. For example, I am more interested in reading posts from stage IVB persons, so I would type in their user names, as many of the issues they face are similar to my husband's.

Also, one last thing, when you are posting a message on the board, only click 'post comment' once. Sometimes it's pretty slow to post and if you get impatient and double click, it will post it twice. You may want to copy your posts before sending them as well, as sometimes they will get lost in space. Pretty frustrating to type away for 15 minutes, and lose it all!

Cheers!
Chantal

haha
Looks like William and I had a wee race and he won! you likely don't need 2 explanations on how to get your mail. As always, William knows what he's talking about!