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Topic: No attorney will help me, because of divided opinion!

Forum: Advocacy — Join here to discuss issues where we can have a voice!

Posted on: Jun 4, 2012 12:55PM

mariana5757 wrote:

Be absolutely certain: don't radiate and don't have a mastectomy!

On July 18th, I had a complete mastectomy--the pathology was benign.  It is my contention that I may never have had cancer in the first place, which places the burden on the lab reading, and/or that IF I had a tiny bit of cancer, that the first surgeon did not correctly remove the tissue he should have in August 2009 due to the incompetency of the technician who could  not find the titanium ball placed at the biopsy site, even after two and a half house.  I believe she gave up and finally placed a needle (I protested that the needle was not at the biopsy site), and I was taken for a lumpectomy--the tissue removed was clear, no cancer.  Subsequent to the formulaic radiation following lumpectomy, I was again diagnosed with DCIS or LCIS (there was disagreement with a second reading) in November 2010.  The pathology reads "there still remains" or "recurrence".  The pathologist told me that it was too soon for recurrence, that what calcifications he was seeing may have been from the radiation.  I sought second opinions at UCI and Loma Linda.  UCI, I just found out gave me a second opinion on the FIRST biopsy from 2009, not the SECOND biopsy from 2010.  Loma Linda ordered a re-reading of the SECOND biopsy, without me knowing it (I thought I had gone for a third opinion) and because I thought it was a third opinion I agreed to a complete mastectomy.  Standards of practice aside, what has happened to me is unforgiveable and should not happen to anyone else.  No woman (or male) should have to go through what I have been through, and will have to go through the rest of my life--I am disfigured for life.  My PCP has agreed with me that the first surgeon in 2009 probably did not "get it all" or remove the the correct tissue, based on the technician's obvious incompetency.  Furthermore, UCI's reading of FIRST biopsy included an addendum; they did not agree it was DCIS, but mentioned LCIS.  Loma Linda's opinion of the Quest Laboratory pathology report and slide was that I had DCIS, but if so, then why was all the tissue removed clear (benign).  Not one speck of cancer.  This is 2011 and that standards of practice should not involve removing a woman's breast needlessly.  A conversation with the surgeon-oncologist at Loma Linda involved her stating "I must question if I did the right thing..." and she proceeded to defend herself with pathology reports, but subsequently continued to mention that "I am not a pathologist" in response to my inquiry about the photocopy of a slide where she commented "that looks like cribform cancer to me."  DCIS, as I now know does not metastasize, whatever and if I had anything, was not invasive.  If there was concern about me having recurrence, why not just perform another lumpectomy, or biopsy again?  I asked about this and was told that the best step was to remove the entire breast.  This sucks and I will never be comfortable again.  I have pain and discomfort, even though my PS has done a terrific job at reconstruction--partial symmetry under clothing.  And, no attorney has been able to help me... why?  The experts are divided.

Surgery 7/18/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right
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Jun 6, 2012 06:17PM Chickadee wrote:

When attorneys refuse a case it's because they don't believe it's winnable. No win, no money.

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jun 7, 2012 01:59AM - edited Jun 7, 2012 02:03AM by dlb823

mariana, I'm so sorry you're going through what sounds like a nightmare.  I live in Southern CA, and I'm wondering if you were to get additional opinions at NCI-designated comprehensive cancer centers, if those opinions might outweigh the opinions of facilities that are not NCI-designated?  If I'm following your story (which is a bit confusing), it sounds like UCI, which is NCI-designated, feels there were errors made.  Loma Linda, which is not NCI-designated, defends what was done. (Is that right?)  If so, then I wonder if getting opinions from UCLA and/or City of Hope and/or possibly USC (the other 3 NCI-designated facilities in So. CA) would shed any additional light on what happened?  If they don't feel errors were made, it might ease your mind and horrible frustration.  If they agree errors were made, I'm wondering if you could build a case on the strength of testimony from these very top-notch cancer institutions vs. a facility (or facilities) that, while they are outstanding hospitals, aren't acknowleged at quite the same level for their expertise in treating breast cancer.

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html#CA

Just my two cents worth, and I hope you can find some peace either by learning more about what happened, or finding a law firm that can help you.      (((Hugs)))   Deanna 

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jun 7, 2012 10:25AM - edited Jun 9, 2012 12:18AM by dlb823

Oops!  Duplicate post...

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jun 7, 2012 10:34AM dlb823 wrote:

mariana, I've just reread your post (it was late last night), and I'm still a bit confused about the sequence of events.  Where did you have your two surgeries?  I still stand by my suggestion above re. the opinions of some institutions and doctors possibly trumping others when it comes to level of expertise.  But it would be helpful to have a better understanding of your situation if you feel like sharing more, either here or in a private message.

I also just want to comment on your statement that "...DCIS does not metastasize, whatever..."  Whether or not there is some invasive component hiding within DCIS, which there frequently is, cannot be ascertained without removing it.  And, if it's diffuse, depending on the size of your breast, that could indicate the need for a mastectomy.  But what's a mystery is why nothing was then found in pathology. 

Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jun 8, 2012 11:59PM mariana5757 wrote:

Thank you for your replies.  I didn't realize I had replies.

I was diagnosed with DCIS in 2009.  My first surgery was partial mastec. (lumpectomy), at Fallbrook Hospital.  The technician that was supposed to locate the titanium implant could not find it... she struggled for quite a while, asked for help, I was x-rayed over and over and over for a good hour while she tried to find it.  Next, she asked for help with an ultrasound; he couldn't find the titanium ball either.  Finally, another tech came in about the same time my surgeon called wanting to know why his patient had not presented to the surgical suite.  All this had taken almost two hours and I was late for my surgery.  The tech explained what was happening, and because I had an implant, she stated fearing having to rupture the implant.  My surgeon told her to not worry about rupturing the implant, because it was going to be removed during the lumpectomy.  The original tech and the new one that came to assist subsequently and almost immediately after the phone call decided that they had seen the titanium ball, injected me with the blue dye that marks biopsy area.  I presented for surgery and had my lumpectomy.  The tissue excised was negative for cancer.  I next went for seven weeks of radiation.  Following radiation I underwent reconstruction and moved on with my life, or so I thought.  My first mammogram showed "there still remains" or "recurrence..." as I stated above.  This was in May 2010.  It took me until July to communicate again with my first surgeon (referrals, trying to find a radiologist willing to biopsy, etc.), and he told me that because the radiologist was afraid of rupturing the new implant (following reconstruction), to biopsy, that he would either find me a Dr. willing to biopsy or I could wait until November (six months) and mammogram again, because it just seemed impossible that recurrence would be evident so soon with such low grade DCIS on first biopsy.  I consulted with my PCP, told him the story about what had happened at Fallbrook and he told us that he thought that maybe the first surgeon may not have "gotten it all," which would have been a possible explanation for the tissue excised with no evidence of cancer for the lumpectomy.  I began to wonder if the techs had marked the wrong place during the attempt to discover the titanium ball... but my surgeon stated quite firmly that could not be the case because the titanium ball was identified upon excision.  I waited until November to repeat mammogram and it was the same: biopsy, so I biopsied and it was DCIS again.  I went to UCI, they wanted full mastectomy, I felt that was not exactly the correct answer, so I went to Loma Linda, and it was at Loma Linda where I gave up... I didn't know what the truth was, I told my surgeon at Loma Linda everything, but she simply agreed with UCI.  When I asked her how long I would have, she told me that I should have a mastectomy within six months.  I found out later that amount of time (six months) was kind of arbitrary.  And now, now I am how I am, missing my right breast, still going through reconstruction.  I feel like there is nobody that I can talk to, nobody that cares... and I wonder how many other women have been through the same thing: lumpectomy, radiation (skin compromised--issues down the road with lungs is a risk--) constaint pain, lack of strength, and depression.  I spent a mini-fortune buying tons of clothes until I finally realized that I was purchasing clothes in an attempt to redefine myself.  Now I feel like crawling in a corner and hiding until I can truly just be myself again, which I will never be.  I work and I do well, but it is hard, it is a daily struggle, and I feel ashamed of myself, because I know so well how many tons and tons of other ladies are struggling with "real" cancer, how many people are maimed on a daily basis... which means to me that I have no right to feel sorry for myself.  Today, I hate all surgeons and all lawyers that think of the money only; not one seems willing to understand... something obviously happened and it should not happen to anyone again, ever, which is why I am posting this here.  It is the only thing that I think I can do.

Surgery 7/18/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right
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Jun 9, 2012 11:07AM Chickadee wrote:

You have been through many traumatic events. It's not surprising that you are struggling to manage this new and different you. We all have to find some way to make sense of turning ou lives, our futures over to fighting this damn cancer. So many options, treatments, none guaranteed. Great Doctors, bad doctors, great support staff, really bad support staff. We are navigating a mine field with so much info we don't understand and praying the professionals do.

I wonder if you wouldn't benefit more from some in depth counseling to help you explore your feelings about these miserable last couple of years. It couldn't hurt.

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-

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