Prophylactic Mastectomy questions

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited April 2014

    HI, Sedakans I had a request from another member by pm as to how I felt about my prophy BMX, that BC was found half way through the process. Family stats were 21 women paternal side. 3 aunts/19 first girl cousins. 12:21 with Cancer. 9:12 BC. Braca 1 & 2  neg. Bad gene. Gene unknown yet. I thought I'd just drop off my story in passing through since I just rewrote it. I'll add here my twin had ER+ BC in 1996.

    I recommended we have hyster/ BSO. In 1996, Ovary removal was not recommended treatment in that time. I had been following BC at the time in my "set" of topics in journal reading. Then there were four family members that developed BC within  2 years. Tamox was being used then to suppress the ovaries. What my years in nursing taught me was to be aggressive. Tamox was still relatively new. We(twin and I) did a pre-emptive strike. Hysters and BSO's each. She survives today. She had 1 node/38. 

    I had been thinking since she had her BC in 1996 about doing a PBMX. Intensely thought about it for three years before I took action. The following is the story.

    Copy of PM:

    member name deleted, sorry for the delay, I was dealing with a new cancer--thyroid. Now in recovery.

    Re:PMX I am now convinced based on a recent reread of my 2009 path report, that my BC was not missed or was so small that the mammo couldn't see it, and that my BC found 4 months later by MRI was just that aggressive. This is based on the fact that I went from Grade 2 -6 to Grade 3 --8 from jan 23rd bx to feb 18th bmx. less than ONE MONTH. After BMX I asked for a pathology re-look to see if there was a grading error. There was no grading error. It was just that aggressive.

    If I had not been in the prophy pipeline I'd be dead. Because the mammo was clear. I still have the NED letter that says "see you next year". I have NEVER regretted the prophy. I have had pain and physical issues but that was b/c of PS and drugs.

    Jan 23rd 2009, I was dx'd with a brain tumor, BC, and lost my career in the space of 4hours. Not a good day.

    My DH was dx'd 3 months after me with Lymphoma. He passed in august 2010.

    My brain tumor started growing in late 2011. Had it removed mar 2012. It was still benign, but that wasn't known until after removal and pathology complete, but we were pretty sure it hadn't crossed the line yet.

    The thyroid cancer dx'd officially Feb28th/mar 10th 2014. would have been removed last summer July 2013, if the pathologist hadn't screwed up and "missed it" on BX. This one I am going to go to court on. !0 months of delay in treatment. EDIT: reason for court 1. He admits he missed it b/c he did a relook at bx slide and "saw"it'. If it were just that I wouldn't consider a suit. next 2. In analyzing the 2nd opinion done comparing line by line with the first pathologist report,  Quest laboratories did 5 stainings. 3:5 are specific to thyroid ca. the three absolutely confirmed the presence of papillary ca with a follicular variant. First, pathologist didn't do any staining at bx or on thyroid at removal. I am lucky though he sent it for 2nd opinion. The staining was available to him, he just didn't do it.

    Long story on colon polyps, I've been very aggressive on colonoscopies. Last one July 2013, I had a precancerous polyp in that scope. Next scope summer of 2014. If there is another precancerous polyp. There will be a new plan which may include removal of that section, or just continued frequent scopes. That chapter hasn't been written yet.

    The prophy route saved my life. :) sassy

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2014

    Thanks for your story Sas!

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited April 2014

    FL :) sassy

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Hi, popping in. I was posting with another member. I thought sharing the below information may be helpful to you Winking.

    The link www.needymeds.org is to a web site started by a Social Worker and a doc. It is a tricky site to use. The first page leads to a several hundred resource pages. But I think this first page, does not project the wealth that lies beneath. Be patient when following the links within the site. There are sections that are disease and drug specific. The specific page then links to lists of organizations that provide monetary or other types of assistance.

    Register first and do the request for assistances form. Reason: the request for assistance form is filed. If you apply to 1 or 20 organizations/companies, the forms don't need to be repeatedly filled out.  The system is designed to pull information from the original form. There may be a few particulars that need to be added to a companies/organizations form.

    All the pharmaceutical companies have patient assistance programs. All the drug manufactures are listed there

    The other way to reach drug manufactures is 1. call the manufactuer patient assistance number(goolge keywords: drug name and manufacturer, then to webpage>>>patient assistance. Very time consuming.

    There is so much more on www.needymeds.org. It took a bit of time to wander through the whole site. I've shared a telephone walk through with many friends and relatives. I even called healthcare facilities to tell them about this link.

    For completeness, there are many ways to get financial assistance for whatever you need. There are organizations that will do things for you i.e volunteers that buy groceries, drive, install handrails, build wheelchair ramps.

    How to find the info besides from the link above?  FIND the SOCIAL WORKER(SW).  It's there job to know these things :)  Talk to all of the following 1. cancer center SW,  2.hospital SW, 3. Insurance companies SW, 4. County SW. 5. church outreach leader.

    I requested from my insurance carrier, a consult with a SW. That one appointment with the insurance carrier Social Worker, led to grants totaling $10,550. The meeting with the cancer centers SW, led to coverage of neulasta  for $4000.00.

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  • hopedreams
    hopedreams Member Posts: 85
    edited May 2014

    Hi Eileen..U seem to have  disapeared from this site???  I was anxious to hear how U did with the breast surgeons that U were going to see back in March...It is now  May ? Would love to hear from U again..Hope U are doing well..& hopefully are getting good results with your intentions..Hope

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    hopedreams, this thread hasn't been very active. You can click on Eileen's name under her avatar. That will take you to her home page. Then click on send her a message Good luck sassy

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  • hopedreams
    hopedreams Member Posts: 85
    edited May 2014

    Hi Sassy...I sent her 2 Personal M essages  in  March & April.. since she was suppose to go to see my breast surgeon for her opinion. who  I recommeded to her.!!.  but never heard back from her at all..Just was wondering  what Dr. she  chose..& If they were going to go with>> HER REQUESTS?? No idea..so I decided to post on here.I hope I hear back from her eventually??  Thanks  anyways..~Hope

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Hope It's tough when someone disappears and we are left wondering. It can take it's emotional toll. You can PM the Mods and see if they will send her an email. They will if a members  gone without notice.  :) sassy

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  • hopedreams
    hopedreams Member Posts: 85
    edited May 2014

    Hi again Sassy  thanks again for your input..Naaa not gonna bother the mods..I would guess she will show up eventually.. not that worried..since she was NOT dx with b/c as of then..She was just looking to have a double mastectomy at that time..& had made many Dr. appts.  also with my recon. plastic surgeon..& my breast surgeon as well..both that I also used. Also with other Dr's  take good care ~Hope

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