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I need a new Onc

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trip2 View Drop Down
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    Posted: Jan 30 2008 at 12:43pm
Hi Elizabeth,
 
I live in Oklahoma and I think we have about 2 cities and I don't live in either one of them.LOL
 
I am so happy you have found a good Oncologist and feel comfortable with her care.  You are right, we aren't talking about the sniffles here so think if it does come back I'm heading to one of the cities, long drive or not.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Netterz Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2008 at 9:14am
Wow....This subject of how alot of you northern Canadian women are having so much troubles with getting good timely care with the Socialized medical system you have, terrifies me. With the upcoming time here in the States later this year of a new President for us, the Democrats running, they are pushing for National Health Care, such as you have up there.  I dont want it. I have excellent Insurance, and paid dearly for it, with my life to get it, by working as an officer at a prison for criminally insane men. I ws injured on the job often, and have more metal in me than most of the new cars. I have had just about every joint ripped from the socket, and muscles ripped and torn, sugeries up the wazoo, so know already, if I live to any sort of ripe old age, I will be inmiserable pain, more than  Ialready live with, on pain meds. I m what they call a 'lifer' will be on maintainance pain, nuero, and anti-inflammatories for the rest of my life. Cancer isnt anything you can just sit around and wait on for 6-9 mo's to start getting care. I think people here in the states would be barking at the legal system, and suing non stop. I know i would be howling every day infront of congress and the media, until it was changed. How awful!!!!! You guys have really pounded the nail in the coffin on how I will vote, and how much noise I am going to make, for the States plans of using a National Health Care, and taking away the awesome isurance I have now.  I am appauled at the thought of being told that being treated isnt urgent and immediate. I dont have patience, at all, and if some one told me that what is wrong with me isnt urgent,  and I am not taken care of for months, I would throw a fit 10 miles high. I have read about people who need operations and other medical needs, and are on 'lists' for horribly long periods of time. I agree we need some chngs here on the states, but I think capping costs and frivolous law suits would solve alot of problems, instead of deverting to being placed in a basket. You poor women, I applaud you all fo your strength and tenacity in being  fighters!!!!!!!!! HUGS to you all! 
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2008 at 10:01am
Dear Darla,
 
I went to see a wonderful oncologist, Dr. Ellis Levine, at Roswell Park for a second opinion when I was first diagnosed....and the way he treated us was the difference between night and day.  The only thing it is very expensive since we have to pay for everything out of pocket.  I had consult, bone scan, PET scan, CT thorax, chest and pelvis in the States for baseline. 
 
I took the advice and treatment they recommended at Roswell Park.  I fought for radiation that was suggested by Roswell Park.  My cancer clinic had a 4 node positive policy before I could get radiation and I only had 3 positive nodes.  My cancer clinic did only baseline blood work....and a chest x-ray.  No tumor markers.  No MUGA scan - nothing. 
 
My first followup appointment is 6 months April 8th, 2008.  I finished chemotherapy in October 2007.  I am paying to have followup scans in the States. 
 
One woman diagnosed the same time as myself....had one 1-cm metastases to her liver...and they told her to get her affairs in order!!!!!!  She had less than a year to live.  I told her to look to the standard of care in the States and the survival rates compared to ours.  The funny thing is that I was fascinated to see how truly inexpensive chemo was over here - and I saw the cost of the Taxol being $170.00 per treatment....so our drugs are much cheaper than what private insurances tack on for prices in the States - SO THERE IS NO EXCUSE in Canada for us not getting the same standard of care in the States because the drugs are sooo much cheaper. 
 
Read all the posts the Canadian women write here and see how little we are told, how long we have to wait, and how we do not get scans.  
 
Socialized medicine means a little bit for everyone....but not enough for most people needing treatment.  My husband is American (from Wisconsin) and I know the difference between having a scan booked immediately or waiting 6-9 months for an urgent but not emergency (life threatening). 
 
Since Avastin is not paid for over here or Abraxane (unless you are accepted into a clinical trial)....I may have to head into the States should I have a recurrence.
 
Thanks for sharing your suggestions....it is the only way your Canadian TN sisters will be able to be able to fight for better care.
 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Darla Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2008 at 9:37am

Hi Cq,

Where in Canada are you? Buffalo NY has a wonderful cancer center, Roswell Park. I don't know if going to the states is an option for you. There is definitely a trade-off with our respective health care systems - universal coverage with limited choices vs. plenty of choices and high costs.

Good Luck

 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2008 at 8:38am
Hi Pam,
 
I'm not sure where you live, but in my humble opinion, you should definitely try to find a new onc.  I wish I could share mine with you.  She welcomes my questions, and when I once asked her about basal subtype, she explained the significance to me in detail, and clearly was up to speed.  I thank my lucky stars for her every day.  There are really good ones out there, and what could be more important?
 
All the best,
 
Elizabeth
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2008 at 10:52am
Oh good grief cg, your Onc has quite the attitude doesn't he?  He may have more experience with breast cancer but the problem is that they don't all stay up to snuff and his patients could be bringing him important information, how stuffy!  I would definitely be put off by this guy.
 
Thank heavens for your radiation Onc, now there is a guy who is comfortable with himself, has compassion and understanding for his patients and isn't afraid to have discussions with his patients.
 
I have read some recent posts about the treatment choices in Canada and it was very upsetting to me.  I really wish you could see another oncologist, best wishes that you can.
 
I was tempted to ask my Onc if he had attended the Breast Cancer Symposium or atleast read updates on what was discussed but decided
with his attitude that day I would leave it alone, he probably had not.
Stage 2 2003
Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2008 at 4:30pm
Dear Pam,
 
I am so pleased everything is fine.   I know how emotionally difficult every check-up becomes.
 
Do I ever know the feeling of being afraid to ask anything.  It is bad enough to get the diagnosis, go through the treatment and then have an oncologist get annoyed if you ask a question about a treatment or new drug.  My medical oncologist finds  "asking questions" very threatening.  He does not like patients to ask any because , as he so unkindly said, "he has been an oncologist for 25 years and I had only had breast cancer for 6 weeks and he knew what was best".  He never used "triple negative", never even mentioned hormone status.  He actually talked to my husband and I like we were idiots.  He was the one that gave "the once upon a time there was 1 cancer cell and it got bigger, and sometimes cells break away and spread to other parts of the body". 
 
Yesterday, I went to see the wonderful radiation oncologist who is highly respected, kind beyond words, and when he said "Remember, you have to do what is best for you, your care/treatment towards your goal - longevity". 
 
He went to the San Antonio symposium and he told me about what was going on....and he told me that the knowledge I learn from the most recent research/clinical trials could only help me and to never stop keeping well-informed and up to date on treatments.  He said he looks forward to waving to a little old lady years from now.  I still have triple negative breast cancer, but he certainly does make his patients feel better while having the condition, being treated and post treatment.  He wanted to see his patients whether they were feeling great, not so great, may have a question, wanted to share information (which he reads!).  Wow, nice to have that after being afraid to go to my medical oncologist
 
What a difference....which is why if I have to make decisions affecting my life....I want someone who will at least not get angry if I ask a question.   The huge advantage you have in the States is that....you have CHOICES.  Over here, the waiting time to see a specialist is horrific...if you can even see another one.
 
If I can get into see someone else...I will have to travel even farther but I do not care.  I do not want to be afraid to ask any questions that can impact on my life. 
 
Thanks for sharing your experience.
 
 
 
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2008 at 3:09pm
Well ladies I went for my 3 month check-up today, all is fine.Thumbs%20Up
He is sending me to a gastro doc and a mri on my spine for unrelated
matters.
 
But here is the kicker.  I asked my Onc if he had heard anything about upcoming plans to routinely check tn tumors to see if they are basal and he wrinkled up his forehead and had not the slightest idea what I was talking about.Confused  So I explained and told him about the possible 5 subgroups and how we had been reading that they need to know about basal or not when considering treatment, he thought I was nuts, I could tell.  He even seemed irritated with me.
I dropped the subject.  We have been reading about tn's being basal like for a long time!
 
I know these docs aren't perfect and this one takes care of all kinds of cancer in different towns, the traveling Onc in his Jag, so he couldn't possibly stay
on top of everything but it did spook me.
 
I've lost some faith in him, almost didn't stay with this place the second time but did cuz of otherwise long travel but I believe that if C does come back to me I will go with the long travel and hope to feel like I'm getting better care.
Stage 2 2003
Stage 1 2007
BRCA 1+
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