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Annie View Drop Down
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    Posted: Jun 27 2009 at 7:38am
Hello everyone, Well I finally was told on Thursday that I had no malignancy in the fluid sample aspirated from the abscess...? in my breast. I said that is great...then the surgeon said but there is something with the cells and I do not want to confuse you. I want you to come in to the office because the situation has to be re assessed. I tried to get more info but he would not say any more...saying my chart was not in front of him...he was calling from his office!   It tried to call back because thinking the worst like my breast must have to be removed I wondered about the radiation...as to continue it or not...He was on his way to surgery. His receptionist did call me back and said he wants you to continue radiation and gave me an appt. for July8. Needless to say I felt really really stressed. Who do they think they are, calling up and then leaving me dangling in mid air...I mean I am exhausted from all of this. Re assess...it sounds like a mastectomy to me.   Also the node that is beside my axilla which is 2mm is not in the line of radiation and I was told last week by the radiation oncologist that the radiation would not be effective on it because it was too big and radiation targets microscopic cancer cells. I talked to the surgeon about it and he said...probably nothing but if it is there in two months we will biopsy it...This all happened last week and the results were still not in on the fluid. I got really weak from all this and am still not that good today. What upsets me the most is what the heck is going on...The surgeon is off on a conference and I have to wait...I mean he could have said do not worry there is nothing wrong just need to whatever...so why should I not think the worst. If I have to have the mastectomy that is fine..I do not feel the best but will do it. The delivery of info stinks...stresses a person out and I am so sick of being my own Dr. Also I have a hard time going to radiation...I just do not like it. Sorry, I just needed to talk about it. Thanks Annie
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Jun 27 2009 at 8:33am
Dear Annie,
 
You have a good reason to feel the way you do.  The waiting intensifies our fears...just as you were going to exhale when he said 'no malignancy' - you catch your breath again when says BUT...then to add insult to injury he suggests you could possibly become confused.
 
This is why they call breast cancer care in Ontario 'the black hole of cancer care'.  You are on your own! They did a study that was released in the fall of 2007 outlining how a woman has to coordinate her care....be coordinator between all the interested parties involved in her care because there is NO communication with her, nor the medical-oncologist/radiation-oncologist/surgeon or GP. 
 
I have often commented that even more exhausting than the treatments was having to coordinate care, follow-up on results, share results and get an appointment to discuss treatment plan (in my case have the same oncologist two visits in a row). I had a follow-up CAT scan to follow lung nodules...it took me one month to get the results! I had the CAT scan - had to wait a week or two before the report was available.  Cannot get phone results over the phone (by appointment only)...asked the technician for the results - she offered me a copy of the CAT scan CD. (I did not have time to do a nuclear medicine course - so I asked for the next best thing - a copy sent to my GP). I could not have a copy sent to my GP because there is a policy of only one copy sent to the requesting physician. So, I had to get through the oncologist's secretary to ask.  She had to ask the oncologist.  I reminded her that I had asked that my GP have a copy of all reports and signed a letter to that effect. So my GP got a copy of my report.  The secretary had the next available appointment in one week....so 4 weeks after I had a CAT scan...get to find out the results or else I had to wait until my next oncologist appointment. 
 
And if any one says ' no news is good news ' just kick them - because reports are filed away every day with results that should necessitate contacting the patient - and they are not informed! Pam posted a report on this forum outlining that very thing.
 
We understand your feelings and we validate them here. The callous indifference, the mentally and physically exhausting process of being the patient and advocate is a real problem to such an extent in Canada there are physicians advising their patients - if you can afford it - run to the States - because if you do not like the oncologist - you can fire the care team - here you have no other options because of the shortage of oncologists and wait times!
 
Been there, done that, and got the aggravation...
 
Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 27 2009 at 9:00am
It is such a nightmare to think about what patients have to go thru when there is a serious disease involved.
 
The stress, waiting, calling, connecting, this as we all know can be at times extremely difficult to coordinate and emotionally draining.
Stage 2 2003
Stage 1 2007
BRCA 1+
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alene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alene Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2009 at 11:13am
I'm sorry you're having trouble with the care in Canada...It's no picnic in the states if you don't have healthcare...No healthcare no mammograms...no physicals...10 years...
 
I had my first mammogram ever...and I'm 53....5/21/2008 because it was discovered that my entire breast wasn't just firmer than the other......It was filled with cancer...and it had already spread to under my collarbone. 
 
My husband and I had just begun buying our own healthcare at 550.00 a month..about 8 months before it was discovered..Every day I live in fear that they'll cancel us..and make us pay everything back.
 
And  even with insurance...what a nightmare...  I don't have prescription coverage...and I'm not living in a shelter...so I don't qualify for help.  So a new treatment comes in a pill...too bad.. I can't have it ...unless I rob a bank or something.
 
Our insurance has an 8500.00 nut to crack each year for me...and we're on year two...Try to come up with that living on SSDI - $1421 a month.. Thank God for the SSDI...it pays the mortgage...but... We're on our last leg financially...cancer has taken almost everything we have. If we fall behind on our premiums which is another 6600.00 a year...we're done.
 
My husband and I often talk about wishing we could immigrate to Canada...or England or France...just for healthcare..
 
I often wish that Canada would come down and open clinics to help provide our citizens with access to healthcare.  You know like they do...to other 3rd world nations.  Save us...from the greedy rich monsters who are letting us die by the the thousands each year.
 
So the grass may look greener over here in the states...but only...if you're wealthy...
 
So...If you're rollin in dough...come on down...we have great healthcare for the rich...
 
 
But if not...My advice is to fight within the system you have...Be the squeaky noisy wheel..Unite...The two of you are stronger than each seperately...  Expose the problems ..and fight to change policies...You're not alone...Tell us how we can help.


Edited by alene - Jun 29 2009 at 11:24am
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV
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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2009 at 2:06pm
Alene,
 
Most drug companies have programs for those that qualify, where they waive fees for their drugs. I am not sure if that has been discussed on this site but I know it has on another site I have been involved with. I have known women that have used it. I haven't retained the info and am not research oriented but am sure I can find the info if someone here doesn't pop up with it in the meantime.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2009 at 2:38pm
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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NINASUZIE View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NINASUZIE Quote  Post ReplyReply Direct Link To This Post Posted: Jun 29 2009 at 3:55pm
I can sympathize and for those who have had no insurance or lost a job and been forced to use savings to pay $1000+/month for COBRA coverage knows that there are many versions of the "financial cancer" that eats away at us.  So, yes, however we can unite together politically perhaps and petition for the further changes in cancer care needed for all afflicted.
 
Facebook has a "cause" section (yes, we are there!!!) and it gives a chance to sign some terrific petitions for healthcare.  Write a politician or 10 for causes and research and resources.  Have your own fundraiser.  Attend area breast cancer support groups/tell your doctor you need help!!!  And keep talking together here, ok?  Because we care everydayWink
Suzie
**************
Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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alene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alene Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2009 at 4:08am
Thank you Suzie and Nancy.  I copied and saved the links regarding patient meds.
 
I'm sorry Annie, I didn't mean to hijack your thread.  It's kinda like the "don't get me started"...thing...about America's greatest shame...healthcare.
 
Anyway...
 
No matter what country you live in...I think we all can relate to the "waiting game".  It's really maddening at times.  In the states..we often have to wait for insurance approvals or until a whole year has passed before we can get tests approved by our insurance companies.  So you wait forever for the test...then you wait some more...to find out the test results.
 
It sounds like you're kinda new to all of this.  You don't list any stats...Tell us what you know about your cancer..and maybe some of us can chime in on the "mastectomy vs lumpectomy" thing. 
 
You're just beginning a long long long journey.  I'm glad you found us.  We want to  help. 
 
Sending love your way...Annie
Alene


Edited by alene - Jun 30 2009 at 4:11am
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2009 at 4:34am
Hi Connie and Pam and all you have so kindly replied,
   Thank You for your responses. I posted a reply a few days ago just before my laptop's battery was about to shut off and I thought it went through but it does not look like it so I will make another attempt. I really did need the validation. For some reason I felt really bad that I became so upset so thank you for your understanding. It really helped. You both have been through so much. Connie, you are so right about having to be your own Dr. and co-ordinator of information. It is ridiculous. The politics were a great surprise to me and I suppose should not be as I am an RN but have not worked for many years now. I do think the medical system has deteriorated in unimaginable ways. There is little or no professionalism left that I can see. Some of the things that I have seen and you too I am sure would have been basis for a person's job being at risk to say the least. Not so any more. We are fortunate here in Canada to have health care provided to all. I have always sympathised with those in the US. I hope things change soon for you. Our problems here pale in comparison to having no medical coverage. I am not sure how to post my stats but to those who have asked I am stage IIA 2/5 lymph nodes, triple neg. grade 3.and am in my fourth week of radiation. I am starting to get very red. Thank You once again for all the wisdom and I thank God for the blessing this site is. Love, Annie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2009 at 9:45am
Dear Annie,

sending you ++++++ vibrations from Los Angeles..

Please know that you are in my prayers..

Please dig deep and keep fighting..

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2009 at 2:10pm
Thank You Steve, I have enjoyed your posts. Yes, it is so important to keep up the good fight. Take care and all the best to you as well. Annie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JanetK Quote  Post ReplyReply Direct Link To This Post Posted: Jul 01 2009 at 12:56am
The American Cancer Society is helping me with my med expenses. and Also an organization called Health Well Foundation. I dont have the links right now but Pm me and I will find them if you cant. All the best. I am not sure if either of these orgs extend to Canada, however.
Hugs
Janet
TNBC feb 13,2009
2.6x 3.5
neoadjuvant chemo 8 rounds
Lumpectomy successful Oct 09
axillary node dissection Nov 09
still awaiting results
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