I was diagnosed in September 2011... Had the biopsy In first week of October... Received the call on October 06,2011. After the biopsyy.... I became very sore and tender around my back and trapezius muscle areas.....
Went to surgeon, he felt no lymph involvement... But I was genuinely sore in several spots around the back of my arms. I asked to have surgery and reconstruction...so I was referred to a different hospital. I met a new surgeon, and a plastic surgeon. My surgeon said he would like to save the breast. He felt no swollen lymph either. He convinced me that in view of the Mammogram films and by palpating my breast... he felt no tumor... and believed my tumor to be about the size of a pea.....
October 27, 2011, pre-op.... Surgery October 28, 2011.... When I woke, I was told that half of my breast had to be taken... Which is fine, I wish they had just taken it all (....by the way... That is what I had asked for to begin with...)... Anyway.... I was also told that 22 lymph nodes were taken... With 19 large, rubbery and with cancer.
I left the hospital with the drain hanging by my side... Which hung around for a month... My drainage would not lessen.... I finally made myself a sling to carry and keep my right arm immobile... So that I might heal enough to get drainage to subside... so I would be able to have the drain tube removed....
Within one week... The drainage was a sixth of what it was... And the surgeon removed it..... YAY !!!
The Cancer Treatment "business" that I was referred to was supposed to be "the BEST"... "most innovative"... "state of the art"... place around !!!
Where was the support, the director, the people that all of their advertisements spoke of??? They were not at my consultation....
I was scheduled with an oncologist at this "Premier" facility...
I met him and left his office devastated, next to tears, feeling like I may as well go pick out a casket... a gorgeous urn ...
Anyway... He was rude, unhopeful, negative, and did not appreciate my hopefulness, my positive, my vigor, and my strength.
I ask... Why is a doctor like this even allowed at a facility that boasts of their fabulous treatment and support system....?
Are their advertisements false?
Are their advertisements just meant to get patients in... and then the patients are just so confused or devastated that they succumb and just go with the status quo???
So... I left this "Premier " facility... and I called my insurance provider... I was horribly shaken and in hysterical tears....
The breast cancer RN coordinator talked with me.... she was wonderful, agreed that I had a bad experience and she suggested I meet my insurance provider in network oncologist ... to see if I might like him.
I think I am generally easy to get along with, easy to please... So I was wondering if I might have been too sensitive because this is a really tough time and an overwhelming experience....
But... Then I remember a friend who had gone to the same oncologist at the "Premier" facility...
I called her to see show she felt about him... And I asked her why she left the great facility and why she quit seeing that oncologist.... She broke out in this huge description of how she left because of him, she filed a complaint about him... And how she was in a crying, screaming... fit when she left...
Okay, now I am validated.... I know it was not just me being sensitive....
How am I examined for two months, doctors could barely feel my lump issues... And I end up with lumps and nodes an inch or larger ???
What happened to :
*proactive action ?
*let's get on this immediately so the patient has their best chance of survival.... !
*the medical staff is knowledgable and knows what tests to run and what things to check so the patient is not put through unnecessary tests and surgeries and treatments.... !
*listening to what the patient feels and requests ?
*the medical professionals being well aware of things like "Dense Breast Tissue" ... and the extra steps that should be implemented !!??!!
I was told at first call of results of my mammogram... That I was probably only stage one at most... Even my surgeon said I probably only had a tumor the size of a pea.... At the consultation a couple weeks prior to surgery.
All of these medical professionals had all my mammograms and X-rays...
In view of being told that I had DENSE BREAST TISSUE.... Should they have ordered an ultrasound?
Should they have ordered an MRI ?
How were these huge lumps missed?
Were these lumps a result of shooting air into my breast for the biopsy???
If I had
For the past few weeks I have been poked, prodded, radioactively injected for a CTScan, and a Bone Scan.... Which I was told resulted in finding Gall Stones and an enlarged uterus that I knew about and have had a previous ultrasound of to show fibroids...
The bone scan showed a tiny spot on my shoulder which I have thought that I have had arthritis in for years...
My blood work has come back with normal liver, kidney,platelets etc.... So I am thinking I have a fighting chance....until the oncologist got ahold of my at the wonderful facility that I was previously so excited to go to...
Now I am told that I will undergo chemo, then mastectomy, then radiation... Be without breasts for 6-12 months... Then have reconstruction...
Oh, and I am still sitting and waiting to start chemo.... The fact that I had to heal from the drain has held me up a bit... But other than that... I am healing well...
The next appointment is for an outpatient surgery to install a porta cath in my shoulder so that chemo drugs can be administered in the port instead of beating up my vein in my left arm.... My right arm cannot be used because that was the side of my initial surgery.
Where am I now... How am I feeling....?
I am feeling like I am heading in to the worst two years of my life... And I am trying to figure out how to make it the best two years of my life.
TIME TO GET CREATIVE !
