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Old 01-25-2015, 11:58 AM   #1
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Join Date: Jan 2015
Location: PA
Posts: 4
I'm a Warrior! :)

I am a two time breast cancer survivor and living with chronic myelogenous leukemia (old folks type).

My cousin calls me a warrior, and I now believe that all of us, dealing with cancer, are warriors!

I was first diagnosed at 42 yrs. old, with medullary breast cancer. It's an encapsulated type of BC. I couldn't feel it at all, and have no history, whatsoever, of any cancer in my families backgrounds. My oncologist prescribed a lumpectomy (left breast), tamoxifin (for 5 yrs.), and radiation. The oncologist said that it had less than a .1% or coming back.

Around the time I turned 54 yrs. old, I got sick very suddenly. I am a paralegal, and at the time, I was working for a large telecom corporation, as the primary legal assistant to five staff attorneys. We went through an assumption (sale) of the company five months after I began working there. It was a very difficult transition for our staff. The company was in utter upheaval. After the assumption, we moved an hour away from where I reside. I loved this job, and my career, but I think the assumption, and stress of incorporation and floating an IPO (initial public offering) on the Nasdaq, etc., was just too much with the drive. Two hours total round trip, on old, very busy highways.

Anyway, one day I arrived at the office, and could not get out of my car. My feet and legs were hurting so badly, that I couldn't retrieve my laptop from the backseat. I called my boss, and related what was happening, and went home. I hadn't been feeling well for months. I would wake up at 6 a.m., after sleeping 10 hours (no life), and felt like I had been hit by a Mac truck.

I saw my G.P. and was told to make an appointment with a rheumatologist. I live in a very small county, and we had only one in our area. Since I had to drive, I had to select this doctor, who could not see me for three months! Even though, the girls in the office told him what was happening, I was told that if they got a cancellation, they would call.

At any rate, I was totally freaked out. I was sure it was cancer again, but not BC. I could barely shuffle to my onsuit bathroom. I slept all day, and still felt horrible. Very sore, achy, foggy thought. You cannot work, doing what I did for a living, and not be able to think clearly.

I finally saw the rheymy doctor, and was told that I had fibromyalgia, Sjogren's syndrome, Raynauds, Chronic Fatigue, and a high ANA (cancer indicator). He really tried to help me, but six months later, he retired. At the time, I was relieved that it wasn't any form of cancer, so I did not make an appointment with another rheumy doctor. The pain was horrible, and I was in a "flare" for two years. I went to a pain doctor, but the meds were killing me.

Then three years after all of this, I developed CML. I was losing so much weight, and still felt awful. My G.P. drew my blood, and in a panic, called me at 11 p.m. and told me to go to the ER. I didn't go....I think I hit burn out at that point. Anyway, my oncologist who treated me for the first BC, prescribed Gleevac, which is working (8 years) now! He said it's an old-folks form of leukemia, and I wasn't old at that point, he said. Most who got it were in their 80's.

Then two years later, I got BC in the right breast. I could actually see the lump on the top of my right breast. I knew what it was. My oncologist did the tests and said it was a "garden variety", and that it was my choice on how to handle it, i.e. mastectomy, lumpectomy, bilateral mastectomy. After all I had been through, I decided for the bilateral mastectomy, to avoid any return of BC. I had chemotherapy, but no radiation. The surgery was trying, but not as awful as I had imagined.

Today, three years later, I am doing really well. My thyroid has been failing, and my doctor said it was probably the excessive radiation that I had as a child, in conjunction with chronic asthma. Back then, my doctor had a machine in her office, and because she was so fearful of penumonia (I had it twice as a kid), she irradiated me (about two to three times each winter).

My thyroid is still hinky. My daughter was diagnosed with Hashi's and I have an appointment with her specialist. I also tested for the BRAC1 gene, but thankfully, my kids are negative.

I just want to say, don't ever give in or give up! I've ridden the Titanic and survived, as my G.P. says. If you would see me, you would never suspect what I have been through. Thankfully, I had family to rely upon, but if you don't, do not quit! Contact county help agencies, for cleaning, food, and transportation. They are there to help!

I'm new to this site. I did want to ask, those who have had a bilateral mastectomy - the scar is 'tight', like a rubber band. Is there anything that I can apply to soften it? Thanks for reading, and God Bless you all! There most definitely, is a light at the end of the tunnel!
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Old 01-25-2015, 04:28 PM   #2
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Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: I'm a Warrior! :)

Wow Katsie, you have certainly been through the wringer!

Thanks for sharing your story and being a Warrior example for others!
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
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Old 01-26-2015, 07:06 AM   #3
Christine R
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Join Date: Jan 2015
Location: Manhasset NY
Posts: 56
Re: I'm a Warrior! :)

Wow indeed!!! Katsie, you are a gal to be reckoned with! Indeed, cancer messed with the wrong person!

I do believe for a fact that when the cancer is a-brewin' we get super tired. This past summer before I was diagnosed I was outrageously tired. I usually have a ton of energy in the summer due to the sunlight but not this summer. I was convinced my thyroid was off (I too have Hashimoto's) but the tests came back fine. So I thought, hey, I'm turning 50 in a few months...that's gotta be it.

Now I'm convinced it was the cancer. I was diagnosed in October. Stage IIa, invasive ductal, triple positive. I found the walnut myself 4 months after my annual mammo/sono (!)

But have faith: I'm in a clinical trial involving Herceptin, Perjeta and TDM1. I have a ton of energy, kept my hair, feel and look fine. The walnut shrank from 3.8 cm to 1.7cm after one infusion. This targeted therapy is a Godsend and I am eternally grateful to all the warriors who came before me.

God bless, feel well!!
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Old 01-26-2015, 08:30 AM   #4
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Join Date: Jul 2013
Posts: 100
Re: I'm a Warrior! :)

Thank heaven the Lord doesn't think I am as strong as you because he hasn't allowed so much to happen to me. My occupational therapist dealing with my lymphedema said I have excessive scar tissue. The chem PA said they sometimes use laser treatments to deal with it. A friend reported that her massage therapist was able to relax the tissue that built up around her scar so there does seem to be multiple ways to help; she said it was painful to have it done but it was very successful. Talk to your Onc about it.
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