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Topic: here is my story

Forum: Acknowledging and honoring our Community — Share accomplishments, milestones, goals of community members, family members or yourself. Just finished treatment? Just got married? Watched your child graduate? Ran a big run? Been a huge help to members in our community? Let's honor our members here!

Posted on: Oct 27, 2018 04:25PM

Goincrzy8 wrote:



So here is my story

End of May 2016 felt a hardness at top of left breast. Was going to Oregon to see daughter for Memorial Day. Kept watching and feeling the left breast. Had vacation at end of June went on that trip still keeping tabs on the breast. While on vacation in Texas we were close to a Cancer Center and billboards everywhere saying in bold letters BREAST CANCER. I am a believer in signs. While on vacation made appointment with Dr. She felt it ordered a mammogram. Had mammo went on my way. Was called back for additional views, the tech said I am sorry if I would have taken extra views if I had seen something. Long story short it never showed on mammo, I had a Ultrasound, them biopsy. It took till Oct 18, 2016 to be diagnosed with Breast Cancer.

Once I was diagnosed, I received a call the next day from Medical Oncologist, then the next day from Surgeon. I saw the Medical Oncologist, she said I had the "typical normal breast cancer IDC> She felt the breast said probably a lumpectomy some radiation and them a hormone therapy for 5 years.

Made appointment to see surgeon, we met with him and my support group after talking to him for about an hour I felt comfortable with him as a lot of "signs" about his education and etc made me comfortable. He then did an exam and said it was a large mass and he was going to have to do a mastectomy. I now wish he had examined me first so that I could have processed that with my support group. So now I am disappointed because MO said NOTHING about removing the whole breast!!!!!

So now we have to set up the appointment date he gives me 2 days Dec 1 or Dec 9. Dec 1 my dad passed away, Dec 9 my dads birthday. I also need to contact daughter who lives in Oregon so she can be home. I had to tell her on her birthday about my diagnosis. So we pick Dec 9 for surgery.

I picked the surgeon because he went to School in Oregon, his parents lived in Oregon and his sister still resides in Oregon and him and I just got back from the same area of Oregon.

Surgery day comes, daughter home for 2 weeks to help me. Surgery takes a while, he tells family it was larger than he thought and he knows he did not get clear margins. Almost had to do a skin graft because of the size. I only opted to do the left with no plastics, since now I know not alot of skin :( so I am lopsided.

Path comes back 13 out of 20 positive nodes. He shares at tumor board with another MO who agrees chemo should start. My MO is from a new group that my insurance sourced out to. The Surgeons MO is not part of my group. So I go to new MO, she orders a cat scan abdomen pelvis chest done on Jan 9.

I get a call from Radiation Oncologist for a consult. I told her I have only had surgery no chemo or anything. She said thats ok lets just do the consult, bring your Ct with you. I see her on Jan 16. During my visit with her she says there is a mass on your left kidney and we need to get you to a urologist ASAP. She sets up the referral ASAP. She also asks if I have ever spoken to the nurse navigator at the hospital for Breast Cancer pts. I said no. She immediately has her staff reach out to nurse navigator and I am contacted within 2 hours.

Apparently my MO group is not being receptive to her and any breast cancer patients.She has helped tremendously. She is a great advocate.

MO then orders an echo, and a port installation. Echo done Jan 19. In the meantime my daughter in law who is in social work has stepped in because of all the delay with primary care, the MO group. She works with the nurse navigator, I get a patient advocate from my insurance because of all the drama.

Sitting in the Surgeon office for pre op for port and my MO has yet to tell me about the cat scan result or the echo report. Both of which my surgeon has, this is at 4;30 pm and we call her for echo and she says heart is good.

Have port installed January 26. Have appointment with urologist on Feb 13 for Kidney.See Surgeon on March 2 he says when are you starting chemo? I tell him I don't know, he gets on phone with his MO friend, my case has been to tumor board numerous weeks. He calls my current MO and she goes on and on and on with no date for chemo. He spends about 1 hour on phone with his MO, My MO and the RO. He knows he didn't get all the cancer and wants something done. She My MO starts me on Arimidex on Feb 10.

So now I meet the Urologist and set up surgery for March 31 to have Kidney removed. My daughter comes home again to help mom.

During all this time I am working with insurance for a second opinion. Insurance is so stupid they set me up with my MO's boss. Said no that is not going to work I want to go to (surgeon MO). We meet and I love love him. I am in medical field and know him and his reputation. I cant switch my medical group until after I am done with Kidney surgery and under no treatment.

I have my appointment with my MO on March 8. She ran my tumor markers and tells me, your tumor markers are HIGH> I SAID THEY SHOULD BE YOU HAVEN'T DONE ANY TREATMENT!

She then says I heard you had a second opinion. I said I did. She said what did they say. He said you should have started me on Chemo in January.

So I switch to new MO and he says we will keep you on this for now but if we have to do chemo down the road we can. So port from Jan 2017 does not get used until Oct 2018, other than port flush. He also starts me on Fasoldex.

Started radiation in May, surgeon still concerned he knows he didn't get all. Radiation took care of chest wall.

Up until around March 2018 Arimidex was working and my numbers started creeping up. By June they were high enough he switched me to Ibrance which I started in July. After 3 cycles he did a cat scan of chest*all is stable. CT picked up some liver mets, so he is stopping and now I am on Navilbene infusion.

All through this I have had a good attitude, I have 2 grand kids 10 and 6 and I need to be here to watch them grow.

I am not sick, I have a few bad cells Dx 10/18/2016, IDC, Left, Grade 2, 12/12 nodes, ER+/PR+, HER2- Surgery 12/9/2016 Mastectomy: Left
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Oct 27, 2018 07:59PM edwards750 wrote:

Good grief how are you still sane after all that? Bless your heart you are one courageous lady. I lost my mind just reading your story.

It just reinforces how we have to be our own advocates through this process. Gone are the days when we accept our doctor’s decisions as gospel and the final word. Where would some of us be if we did that? I know it’s tough when there are multiple doctors involved in our care but we have to take control and notes.

I realized I couldn’t totally rely on them when my MO prescribed Arimidex and I had osteopenia. Arimidex attack’s the bones. Duh. When I complained she switched me to tamoxifen. I have osteoporosis now. Not saying it was due to Arimidex but it didn’t help thatI took it for a year.

You will be okay. You can do this. I have grandchildren too - 12. The youngest are 2 year old twin boys.

Keep the faith and keep us posted.

Diane

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