My mom

Goldheart
Goldheart Member Posts: 36
edited January 2014 in Uterine/Endometrial Cancer #1

My mom was diagnised with UPSC stage 3C and it took the hospital 5 weeks to strat the treatment. I think it's disgracefull. We live in Canada and the public system is free but there is a long waiting list. I wish we had come to US. I fear we waited too long. Then they start with chemo and radation and no surgery recommonded. We got an online openion which recommonded surgery first and chemo next. Is there anyone with similar treatment options? 

Comments

  • debrajo
    debrajo Member Posts: 1,095 Member
    #2
    UPSC

    Sorry about your Mother, dear, but I think they are so off course it  scares me.  I am UPSC also.  Unless your mother has tumors too big to remove or the damage of removing them would be too great a health risk, the people I am under{M.D. Anderson in Houston}would not even consider NOT doing surgery.  Send us some more info on your Mother.  There maybe a good reason, but I can't think of one!  The standard for UPSC is a radical hysterectomy, three rounds of Taxol/Carboplatin,three to five rounds of internal radiation{maybe external radiation also} followed by three rounds of Taxol/ Carboplatin.  The number of chemo, radiation,external radiation, ect. may change from dr. to dr. but it's all usually close to what I wrote.  There are several on here with UPSC.  Let us know if we can help.  Best, Debra 

    P.S.  UPSC is always a grade C aggression cancer, therefore the aggresive treatment.

  • Alexandra
    Alexandra Member Posts: 1,308
    #3
    Goldheart, I replied to you on Expressions and re-posted it here

    Like your mom, I went to Sunnybrook (Odette) and also to Princess Margaret Hospital. I suppose your mom is seeing Dr. Covens, Dr. Kupets or Dr. Vicus at clinic D. They know what they are doing. I would not put much trust in online opinions. If you have doubts go to PMH (Dr. Dodge, Dr. Levin, Dr. Rosen, Dr. Oza) to get the second opinion. But in my experience PMH is much slower and more disorganized than Odette, though it has more options for clinical trials.

    It also took me over a month from the initial ovarian cancer stage 3C diagnosis to the start of chemo. Every newly diagnosed cancer patient and their relatives are demanding immediate treatment and doctors are pretty immune to the drama. They are doing what they can given the cancer center capacity and the amount of patients. Since last year waiting time improved, because they renovated their chemo floor and moved all breast cancer patients out of Odette to the M-wing. Waiting sucks, cancer probably spread, but you know as well as I do that there was not much you could do about it, short of paying for the whole treatment out of pocket in the USA. Stop blaming yourself for something out of your control and focus on helping your mom through her cancer journey.

    For the majority of women with UPSC, surgery with debulking is done first, before chemo. It is the protocol that Debra described, same in USA and Canada. For some reason your mother was deemed not a surgical candidate for upfront debulking. Does she have a heart or lung condition or a lot of ascites (fluid) or was cancer so wide-spread within her pelvis that the doctor said she won't be able to get it all out till it's shrunk from chemo? The doctor should have explained to you why and if you forgot to ask, you will find it in progress notes uploaded on mychart.ca.

    Based on what you're describing your mom had at least 2 CT scans, she is chemo-sensitive and it's working well. Then they will hit it with radiation and will do hysterectomy. The same doctor she is seeing now will operate on her.

    If you want to chat about Sunnybrook gyno-oncology call me (905) 960-8043.

    Best wishes to you and your mom,

    Alexandra

  • Goldheart
    Goldheart Member Posts: 36
    #4
    Thanks for your comments

    The cancer had spread to pelvic including cervic, intestine and rectom as well as spread to lymph nodes up to her stomach. My mom had an appointment with her doctors today and they said the chemo responded very well. All the lymph nodes were clear and the tumour has shrunk. They are recommending 5 weeks of radiation and are postitive they would do a surgery next. This was a good news. 

    But, they also said there is no cure for this type of cancer and recurrence would happen. Which puts me back into my worrying satge. I feel like I shouldn't keep my hopes up but I want so badly to hear some good news and celebrate. 

    My mom's gyno-oncologisi is Dr Lilian Gien whoi is very young and a terrible communicator. She never answers any questions. The only thing she says is "i don't know we'll wait for the results" she is so scared of commenting on possiblities that you feel she has never done this before. The radation oncologist is Dr Gill Thomas who is more senior. She explains the results and treatment plans but she doesn't seem to know anyting about surgery. So we don't know much information about why a surgery was not recommonded before and how it might be done after the radation. 

    We would have prefered to have more senior gyon-oncologist but it seems it's impossible to change doctors. There seems to be some sort of bureaucracy in the hospital and the doctors are backing each other up. The patients are intruders or hunters and the doctors are running away. I don't see a great passion in doctors to save people's life. I feel sorry for my mom. 

    Please write to me.

     

     

  • janh_in_ontario
    janh_in_ontario Member Posts: 151 Member
    #5
    sunnybrook and dr vicus

    I highly recommend you stay away from dr vicus - I saw her this week. she is the rudest, most adversarial, condescending and dismissive dr I have ever seen!I am never going back to sunnybrook - I will die first. sadly that is probably true.

    the doctors in canada are a band of brothers and second opinions are not welcome and patients are deemed to be the thorn in their sides! and God help them if the patient dare to question their pathetic one-word responses to a concern.

    very sad - I have said many times on here that while it is wonderful that I don't have to worry about paying for healthcare,  the level of care in canada is much different - and yes I dare to say LESS than in the US.

     

    stay away from vicus - I wouldnt take my dog to her.

     

    mho

    jan

     

     

     

     

     

     

     

     

     

     

  • Alexandra
    Alexandra Member Posts: 1,308
    #6
    Goldheart said:

    Thanks for your comments

    The cancer had spread to pelvic including cervic, intestine and rectom as well as spread to lymph nodes up to her stomach. My mom had an appointment with her doctors today and they said the chemo responded very well. All the lymph nodes were clear and the tumour has shrunk. They are recommending 5 weeks of radiation and are postitive they would do a surgery next. This was a good news. 

    But, they also said there is no cure for this type of cancer and recurrence would happen. Which puts me back into my worrying satge. I feel like I shouldn't keep my hopes up but I want so badly to hear some good news and celebrate. 

    My mom's gyno-oncologisi is Dr Lilian Gien whoi is very young and a terrible communicator. She never answers any questions. The only thing she says is "i don't know we'll wait for the results" she is so scared of commenting on possiblities that you feel she has never done this before. The radation oncologist is Dr Gill Thomas who is more senior. She explains the results and treatment plans but she doesn't seem to know anyting about surgery. So we don't know much information about why a surgery was not recommonded before and how it might be done after the radation. 

    We would have prefered to have more senior gyon-oncologist but it seems it's impossible to change doctors. There seems to be some sort of bureaucracy in the hospital and the doctors are backing each other up. The patients are intruders or hunters and the doctors are running away. I don't see a great passion in doctors to save people's life. I feel sorry for my mom. 

    Please write to me.

     

     

    Hi Goldheart

    Lilien Gien Tran though is young, she is wicked smart and she has done this before. She received the Gynecologic Oncology Group – Young Investigator Award 2012. But...

    If you want someone more senior to consult, instead of fighting with nurses and receptionists what I would do: next time you're inside waiting to see the doctor, ask for consult from Dr. Covens, Dr. Kupets, Dr. Osborne or Dr. Vicus. Say that you're prepared to wait for as long as it takes. And don't leave till one of them comes in. Don't accuse anyone, don't make a scene, don't complain about lack of attention, don't waste their time - just quickly ask very specific questions and you will get specific answers. Come prepared with every question you might think of and write down the answers. However shocking it is, the doctors don't have time to make you feel warm and fuzzy. I go to Dr. Kupets and she sees 36 cancer patients a day on top of doing surgeries. I came to terms with it long time ago.

    Sorry, I don't know any radiation oncologists, because I never had radiation. It's not done for ovarian cancer.

    If you haven't already, register on mychart.ca. Every lab result, clinical notes of your every visit, radiology and chemo schedules, medications are there in pdf format. Or you can go upstairs to Medical records and request hard copies of everything. It should reduce your anxiety. There are also Family Services, Nutritionists and Psychologists, who can walk you and your mom through some aspects of your new reality.

    Cancer spread to bowels and rectum explains why they decided to delay debulking. If they did it before chemo and radiation, your mom would have ended up with permanent colostomy or worse.

    Speaking about "not curable" and "recurrence" - they are telling the truth. However many women live for years with it, like a chronic disease, periodically getting more chemo. There is a small percentage of women who don't recur, and hopefully your mom will be one of the lucky ones.

    Good luck to you, call me if you need anything

  • Alexandra
    Alexandra Member Posts: 1,308
    #7
    janh_in_ontario said:

    sunnybrook and dr vicus

    I highly recommend you stay away from dr vicus - I saw her this week. she is the rudest, most adversarial, condescending and dismissive dr I have ever seen!I am never going back to sunnybrook - I will die first. sadly that is probably true.

    the doctors in canada are a band of brothers and second opinions are not welcome and patients are deemed to be the thorn in their sides! and God help them if the patient dare to question their pathetic one-word responses to a concern.

    very sad - I have said many times on here that while it is wonderful that I don't have to worry about paying for healthcare,  the level of care in canada is much different - and yes I dare to say LESS than in the US.

     

    stay away from vicus - I wouldnt take my dog to her.

     

    mho

    jan

     

     

     

     

     

     

     

     

     

     

    Jan, I'm sorry that Vicus was mean to you

    My only experience with Dr. Vicus was in September 2012. I was scheduled for debulking with Dr. Kupets for Sep. 14, 2012 and they called me in August offering an earlier surgery date with Dr. Vicus. I insisted on interviewing her first and after a lot of arguing, she called me at home. The conversation was half in English half in Hebrew. Long story short I was not satisfied with her 1 year of Canadian experience and passed on her. The reason being that I refused to sign consent for possible iliostomy and she was disrespectful in questioning my decision. Dr. Kupets did my surgery and it went well. I had many issues with her too, but she is an expert and we understand each other. Never once in the history of our relationship I let her get away with one-word responses or sending residents in, and god knows she tried. If I don't understand or don't agree, I push till I'm satisfied. If you don't act like a victim, do your research in advance and dominate the conversation, they respect you. On Wednesday I saw Dr. Kupets about my recurrence and I'm going back there on Oct. 16th. I plan to do 4 rounds of Carboplatin at Sunnybrook and then switch to the Olaparib trial at PMH.

    The only doctor I really liked was Dr. Jason Dodge at PMH. He has the highest rating on ratemds.com. For a variety of reasons I couldn't get him to operate on me. I go to PMH to Dr. Oza for second opinion all the time and Sunnybrook doctors know about it. I got a referral to PMH from my regular GYN. I carry notes and CT scan CD's between them myself, because Sunnybrook and PMH don't communicate. I couldn't care less about their rivalry, I will do what's right for me.

    I don't feel that we are short changed in Canada, except maybe access to Avastin. But it's not the doctor's fault.

  • Goldheart
    Goldheart Member Posts: 36
    #8
    Hi Alexander

    I admire your courage when dealing with doctors. I wish I knew more about hospitals. I remember when we were fed up with Dr Gien not answering any of our questions,  she and Dr Thomas both got so defensive. When we told them about the second openion we got from a relative in US. They both were upset and in the next meeting they were both short and cold with us. I thought to myself at the time, well we don't have a chioce here. We have to shup up because we don't pay.

    I'm familiar with mychart. But I regret reading some of the reports. Specially the ones from Dr Thomas. She used the word "unfortunately" 5 times in her first report. She also mentioned how we were wrong with getting a second opinion. And how if this chemo doesn't work the next option would be palliative. She didn't mention anything about clinical trial and when I asked for a referral letter to go to PMH for clinical trial they completely ignored me.

     

    When you say we can go and talk to other doctors. Wouldn't they back up other doctors opinion? Do you think we can ask a senior doctor to do the surgery?

    About recurrence. Do you still have to go through waiting list to start the treatment? and do you go with the same doctors?

    In terms of follow ups after the treatment, how often you can have them? 

    Thanks for your information about Princess Margaret hospital. We always thought we should've gone there. We were also told the hospital in Hamilton could be an option and they may have a shorter waiting list. Do you know if it's true?

    How are you doing with your recurrance? is this the first one? Is it related to your original cancer? or it's a new cancer?  are recurrances similare in most people? 

    How do you keep your spirit up? I guess if you think about it as a chronic illness it can't be so bad. Because so many people live with illness for example with heart disease or kidney and liver disease. 

    Hope to hear from you

     

     

     

  • Alexandra
    Alexandra Member Posts: 1,308
    #9
    Goldheart said:

    Hi Alexander

    I admire your courage when dealing with doctors. I wish I knew more about hospitals. I remember when we were fed up with Dr Gien not answering any of our questions,  she and Dr Thomas both got so defensive. When we told them about the second openion we got from a relative in US. They both were upset and in the next meeting they were both short and cold with us. I thought to myself at the time, well we don't have a chioce here. We have to shup up because we don't pay.

    I'm familiar with mychart. But I regret reading some of the reports. Specially the ones from Dr Thomas. She used the word "unfortunately" 5 times in her first report. She also mentioned how we were wrong with getting a second opinion. And how if this chemo doesn't work the next option would be palliative. She didn't mention anything about clinical trial and when I asked for a referral letter to go to PMH for clinical trial they completely ignored me.

     

    When you say we can go and talk to other doctors. Wouldn't they back up other doctors opinion? Do you think we can ask a senior doctor to do the surgery?

    About recurrence. Do you still have to go through waiting list to start the treatment? and do you go with the same doctors?

    In terms of follow ups after the treatment, how often you can have them? 

    Thanks for your information about Princess Margaret hospital. We always thought we should've gone there. We were also told the hospital in Hamilton could be an option and they may have a shorter waiting list. Do you know if it's true?

    How are you doing with your recurrance? is this the first one? Is it related to your original cancer? or it's a new cancer?  are recurrances similare in most people? 

    How do you keep your spirit up? I guess if you think about it as a chronic illness it can't be so bad. Because so many people live with illness for example with heart disease or kidney and liver disease. 

    Hope to hear from you

     

     

     

    Goldheart, I will reply to you privately

    When you log on to CSN, you will see the green notification on top of your screen. Click on it.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #10
    Alexandra said:

    Goldheart, I will reply to you privately

    When you log on to CSN, you will see the green notification on top of your screen. Click on it.

    Thinking of you Alexandra

    I am thinking of you on your next fight and praying for you.  Please let us know how you do.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #11
    Goldheart said:

    Hi Alexander

    I admire your courage when dealing with doctors. I wish I knew more about hospitals. I remember when we were fed up with Dr Gien not answering any of our questions,  she and Dr Thomas both got so defensive. When we told them about the second openion we got from a relative in US. They both were upset and in the next meeting they were both short and cold with us. I thought to myself at the time, well we don't have a chioce here. We have to shup up because we don't pay.

    I'm familiar with mychart. But I regret reading some of the reports. Specially the ones from Dr Thomas. She used the word "unfortunately" 5 times in her first report. She also mentioned how we were wrong with getting a second opinion. And how if this chemo doesn't work the next option would be palliative. She didn't mention anything about clinical trial and when I asked for a referral letter to go to PMH for clinical trial they completely ignored me.

     

    When you say we can go and talk to other doctors. Wouldn't they back up other doctors opinion? Do you think we can ask a senior doctor to do the surgery?

    About recurrence. Do you still have to go through waiting list to start the treatment? and do you go with the same doctors?

    In terms of follow ups after the treatment, how often you can have them? 

    Thanks for your information about Princess Margaret hospital. We always thought we should've gone there. We were also told the hospital in Hamilton could be an option and they may have a shorter waiting list. Do you know if it's true?

    How are you doing with your recurrance? is this the first one? Is it related to your original cancer? or it's a new cancer?  are recurrances similare in most people? 

    How do you keep your spirit up? I guess if you think about it as a chronic illness it can't be so bad. Because so many people live with illness for example with heart disease or kidney and liver disease. 

    Hope to hear from you

     

     

     

    Goldheart

    I read your post on the long thread regarding anyone have UPSC.  You asked Daisy a question.  As Debrajo said Daisy passed away in June.  She and I were diagnosed about the same time.  We both were diagnosed with Stage 3-C.  We both had surgery first and then chemo.  I had the sandwich treatment of 3 chemo, then radiation and then 3 more chemo.  Daisy had 6 rounds of chemo initially ,but i don't think she had any pelvic radiation.  

    We both had different journeys.  I am working on my third recurrences.  But so far the cancer has stayed in the lymph nodes.  I have been able to keep on taxol and a platin.  I had 9 treatments of carboplatin and had a severe reaction and switched ti cisplatin.

    many times people get chemo or radiation before surgery to shrink the cancer.   There was a break between the chemo and the radiation to allow the body to recuperate and then another break between radiation and chemo.  

    I was told initially that this cancer was not curable, but treatable like a chronic disease.  So I know I will need chemo in the future again.  As soon as I go off chemo my marker begins to rise.  My doctor tells me it is just a number.  

    I am sorry you and your Mom are having to go through this.  Ask any further questions or concerns you may have.  Feel free to come and vent, too.  In peace and caring.

  • Goldheart
    Goldheart Member Posts: 36
    #12
    my mom had a surgery

    My mom had her suergery on Firday in the US and everything went well. Her oncologist is very happy. So horray to United State, and I don't know what to say about Candadian health system. Excepst they are so behind with new research and the doctors are so snobby and arrogent. 

    They did irradiation hysterectomy (robotic surgery), and will start chemo after 3 weeks. I am so disappointed we didn't go to the US at first. The waiting list in Canada is awful. They make you wait for 5 ot 6 weeks and this is for aggrassive cancers. The staging is UPSC 3C. I just want to know if anyone knows there is a clinical trial for this type of cancer in the US?

    Cheers

    Pav

  • Goldheart
    Goldheart Member Posts: 36
    #13
    Haven't posted here for a

    Haven't posted here for a while. I had a sort of mix feeling after my mom's surgery. One minute I was so happy for successful robotic surgery and next so sad because the pathology result wasn't so good. The tumor spread to all parts of uterine and a part of cervix and a part of vagina (metestized), and most nodes were involved (about 21). I never seen anyone here who had this many positive nodes.

    The surgeon was positive as he had removed everything and there was no complications. The oncologist however was blunt and said the chance of recurrence is high and prognosis is extremely low. 

    My mom is now mid way through her radiation therapy. She feels fine and positive. But I am not. I fear that when cancer returns it could be multiple nodes and everywhere.  

    I have been reading the posts here and gone back to 2008. It seems the treatment plans and drugs choices haven't changed much. What is the most advanced drug and treatment?

    Mom responds well to Taxol + Carbo but I understand about body resistance and I hope I can find a clinical trial that useses different drugs. My question is, is it better to not use Taxol next time to avoid body resistance? 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #14
    Goldheart said:

    Haven't posted here for a

    Haven't posted here for a while. I had a sort of mix feeling after my mom's surgery. One minute I was so happy for successful robotic surgery and next so sad because the pathology result wasn't so good. The tumor spread to all parts of uterine and a part of cervix and a part of vagina (metestized), and most nodes were involved (about 21). I never seen anyone here who had this many positive nodes.

    The surgeon was positive as he had removed everything and there was no complications. The oncologist however was blunt and said the chance of recurrence is high and prognosis is extremely low. 

    My mom is now mid way through her radiation therapy. She feels fine and positive. But I am not. I fear that when cancer returns it could be multiple nodes and everywhere.  

    I have been reading the posts here and gone back to 2008. It seems the treatment plans and drugs choices haven't changed much. What is the most advanced drug and treatment?

    Mom responds well to Taxol + Carbo but I understand about body resistance and I hope I can find a clinical trial that useses different drugs. My question is, is it better to not use Taxol next time to avoid body resistance? 

    It is a rollercoaster with emotions

    I can't answer your question if it is better not to use Taxol the next time.  I also can't imagine how you feel as the loved one of a cancer patient.  I cannot begin to imagine how my twin sister felt when she heard I had cancer.  I found out later that while doing all kinds of online research for me she found the statistics on my agressive subset of cancer and it is why she was crying so much. 

    Being the patient and being the caregiver are two very different things. 

    I am so glad your mothers surgery was such a success.  I do think oncologists have to be honest with statistics or else patients would turn around and sue them for not saying recurrence was a possibility.  My gyn/onc was telling me and I stopped listening.  However, I do not think the statistics CANNOT illustrate the will of women.  I met a woman at the National Race for Women's Cancers in Nov who had stage 4 endometrial cancer AND a second unrelated gynecological cancer and she has celebrated 5 years NED! 

    Anything is possible.  As I like to quote Winston Churchill, "Never, ever, ever, ever, ever, ever give up."

  • Goldheart
    Goldheart Member Posts: 36
    #15
    NoTimeForCancer said:

    It is a rollercoaster with emotions

    I can't answer your question if it is better not to use Taxol the next time.  I also can't imagine how you feel as the loved one of a cancer patient.  I cannot begin to imagine how my twin sister felt when she heard I had cancer.  I found out later that while doing all kinds of online research for me she found the statistics on my agressive subset of cancer and it is why she was crying so much. 

    Being the patient and being the caregiver are two very different things. 

    I am so glad your mothers surgery was such a success.  I do think oncologists have to be honest with statistics or else patients would turn around and sue them for not saying recurrence was a possibility.  My gyn/onc was telling me and I stopped listening.  However, I do not think the statistics CANNOT illustrate the will of women.  I met a woman at the National Race for Women's Cancers in Nov who had stage 4 endometrial cancer AND a second unrelated gynecological cancer and she has celebrated 5 years NED! 

    Anything is possible.  As I like to quote Winston Churchill, "Never, ever, ever, ever, ever, ever give up."

    Thank you "NoTimeForCancer",

    Thank you "NoTimeForCancer", you have given my strength. I have been thinking about what you posted here. It's true.

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