Posted on: Nov 12, 2007 11:33PM - edited Nov 12, 2007 11:33PM by 010407
Nov 30, 2007 08:22PM - edited Nov 30, 2007 08:30PM by AprilOdo7
Help! I was recently diagnosed with IDC in August of this year.
My initial diagnosis was just prior to the surgical oncologist acknowledging that a wire from a previous 'biopsy' that went wrong was still inside my breast. What was then a 1 cm lesion now presents as a 6 - 8 cm cancer.
A subsequent MRI revealled that I had a 6 - 8 cm lesion presenting in both breast. I was given the option of bilateral masectomy. I was devestated.
Since I could not feel the lesion on the right breast, I found myself literally running from the said diagnosis in preference of finding a second and/or third opinion. My second opinion revealled nothing in the right breast despite my strong feeling that 'something' was actually present there: I had been told as much.... The doctors seemed to have issue with the initial MRI. Yet, a third opinion revealled something that both startled me as well as diminished my faith in what I have come to place my hope in: doctors and modern medicine; for my third opinion, in attacking the findings of the first MRI, revealled that there was nothing whatsoever presenting in my right breast in the form of a 6 - 8 cm mass. It was discovered then that the MRI individual, a radiologist by profession, had deliberately transposed my MRI to give the false positive of something being there AFTER I argued in defense of my referring physician that what I was sent in for a diagnostic mammogram for was the fact that the Doctor referring me stated emphatically that this was a solid mass with no definable boarders and that I would stand by her prognosis ..until proven otherwise. She, being a radiologist, I said, was literally stepping out of her boundaries in diagnosing my condition: She demanded that all I had was a 1.3 cm cyst and that she would be recommending that it be asperated else that I be seen in one year for follow-up evaluation only. This deception has taken some four months away from the proper diagnosis of my disease and its ultimate treatment.
Further deception was this place telling me that there was no lymph node involvement in the left axilla. There was swelling and pain ...yet on ultrasound biopsy of the left breast at the surgeon's order, a rather large lymph node presented itself directly adjacent to the 6 - 8 cm mass. When I asked what this was, the radiologist conducting the biopsy stated, "That is a lymph node." When I asked if he was going to do a biopsy of the node as the doctor had requested in his referral notes, he stated, "No...we are not gonna touch that." Later I hear from my doctor that they say that there is NO lymph node involvement, of which they electronically place in my medical file.
Also, when the first MRI needed further evaluation on the right, due to what had presented itself, she herself volunteered to do the biopsy, thus taking another doctors place that afternoon. She entered just under my right breast, and into the fasia tissue between the breast and the breast muscle, and removed tissue from there to present to the pathologist: a place that was certain to reveal nothing there, as the MRI was maliciously transposed and nothing would have been found anyway.
My total lack of faith in the ability of this organization as a whole in unbiased treatment of my ailment is without warrant. I feel afraid for myself and my family....wondering if I have a fighting chance to beat this thing...at least for my husband and children's sake. My husband states that I should go with this organization, dispite what had happened, and that the cancer is 'getting larger and spreading' and that I need systemic chemotherpy immediately, that he loves me and that he doesn't want to lese me. I think, with these people? What a wad of crock! Are you serious? Never the less here I am......yet still wary and undecided.
I have started neoadjuvant chemotherphy in an effort to, first of all, shrink the mass so as to try for breast conservation surgery at a later date. But, I do not know as of yet whether or not this my cancer is actually responsive to this treatment: I just want to have this thing out as well as the enlarged lymph nodes as well, several now, that now present themselves in both left axilla.
The medical oncologist (chemo doctor) now states that the surgical oncologist has stated that he will be doing a lumpectomy sometime in December, as well as a lymph node dissection. I am hurting here....emotionally.
Any suggestions on how to navigate this rough terrain I now find myself and my family travelling upon will be much appreciated. Thank You.
Nov 30, 2007 08:33PM AprilOdo7 wrote:
I guess I am venting...else talking to myself, right?
Nov 30, 2007 08:49PM - edited Nov 30, 2007 08:50PM by Fitztwins
My dear, this is not an interactive board, like a conversation. We all check in now and then, so responses to your post may not be immediate.
Now, you are in the throws of shock and I am sure scared beyond your wildest imagination.
If you don't trust your medical care team, find another. I think we spend a lot a time second guessing ourselves. I found that this board was an excellent resource and the treatment that I received was compariable to others.
I did not have chemo before. I had a left mast, then chemo, then rads. I wonder if the lymph node you are speaking to is a mamm lymph node and not one under the arm?
please come back with other question you might have. We have other conversations that may be more specific to what you are going through. Like "going through treatement"..
Nov 30, 2007 09:18PM maryannecb wrote:
That is quite a story April. Sorry you are dealing with this and that you are so distressed right now.
Like Janis said this is a discussion board so often your question or comment may take time to generate some reponses.
Trust is the basis of your relationship with the medical team. If you do not trust your caregivers ,start looking elsewhere.
Many women on this board have had neoadj chemo and many have had great reponses. Although it is hard to wait for the proof that the chemo is working for you, thati s just what you have to do... Wait...and this is a great place to do it as many of us have been in a similar spot.
Nov 30, 2007 09:43PM Hattie wrote:
I had chemo to shrink my mass, then had surgery and it was a lumpectomy, not a mastectomy. Write down your questions and collect copies of your reports (surgery, pathology, etc). You can do this (even tho you don't want to).
Dec 1, 2007 12:32PM - edited Dec 1, 2007 12:48PM by AprilOdo7
Thank you Janis, Maryannecb and Hattie.
I DO understand that this is not an interactive board inthe sense of your typical chat forum. Lol...I promise to do better next time...<smile>
I think with all cancer patients, at least it is with me, that there is a need for understanding in all things pertaining to our experience. In my need to know, I find that I am getting the short side of the deal here, and it would be best I did go with my gut feeling to seek out a more trustworthy team for my medical care.
I went into this thing when symptoms of this condition started to show (pain and discharge with a lump that seemed to increase in size with every "monthly plague")...TOTALLY trusting and dependently leaning solid on the shoulders of my current medical team: thus far I feel a let down....
I totally agree that the answer is to look elsewhere, at least in the direction of an National Institue of Health affiliated organization specializing in womens Breast Care--I am currently located in the desert region of Southern California where the doctors are either foreigners or 'shipped out' from the inner cities and surrounding surburban areas to 'make a difference' here. $$$...who knows....
My second and third opinions were had along the coastal regions of Southern California, Irvine, CA and Newport Beach, CA where the quality of care as well as the positive outcomes for women experiencing breast cancer are phenomenally better. (That care is some 55 miles away...and expensive to get to as well, but initially, I was willing to travel.)
Hattie, I HAVE ALL of my medical records so far,as well as all MRI's, CAT scans, diagnostic mammograms, bone scans, lung scans, brain scans, etc. Mind you, apart from the initial MRI, I had to come out of pocket in paying for many of them while in Irvine and Newport Beach. The reports and x-rays seem to tell a story of medical neglect and/or malpractice.
True. Again, I DO need to look elsewhere for my care...as well as seek out a legal professoinal for further assist.
Ok...No more venting here. I need to start reading the board,...listening....so as to understand...lol...and not give sacrifice by talking too much,hmm?
And thanks for responding to little ol' me.
Dec 1, 2007 12:35PM - edited Dec 1, 2007 12:48PM by AprilOdo7
If I may ask....
Just how sizable was your mass?
You sound like you were in the same boat as I am...yet no long afraid. I know I am...
Dec 1, 2007 12:36PM - edited Dec 1, 2007 12:48PM by AprilOdo7
My poor sig line...better.