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Old 04-11-2013, 07:48 PM   #21
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: No tests scheduled after chemo is finished.

Debbie is right.

I thought the way you did after my treatment but the more I've learned, the more I realized I was wrong.

First, those tests don't find metastatic cancer until it is about symptomatic anyway. They find it by the cm, not the cell. Right after treatment, you likely don't have findable cancer, but if you do (I did) it will be found.

And second, once you have found it, your life is not any longer than when you didn't find it. Just unhappier. You start treatment that never ends until the day you die. And, evidence shows that finding it before it is symptomatic does not give you any bit of a longer life. Like Debbie said, we are so used to early detection we think it applies to mets too...but it doesn't. A few months or a year until your symptoms show make zero difference in your lifespan. Catching mets early doesn't mean you live longer. It means you are in treatment longer.

So, Mary Jo, you will worried for a while. Very worried for a year probably, then relax a bit, then after 3 years you will start to realize you may have beaten it, after five years even more confidence....but it'll always be in the back of your mind. That's the price you'll pay. Don't make it a higher price than it has to be.

I think the trick for you will be not worrying about every little ache and pain and remembering that cancer patients can have simple pains too. Try to put yourself in the mindset of a survivor: you HAD cancer, (not have), stop reading cancer blogs and forums, stop talking about it, stop living it. It will take some time to do that but you just have to reassure yourself that you did what could be done, you have the best doctors and most people manage to put it behind them.

Was what you did worth it, you ask? Make it be. Imagine what being a survivor will look like to you, and try and make that happen. Think of it as a renewed chance to start your life. You had a horrible scare, a terrible year and now it's over. The after affects will linger on but they too, will dissipate and how quickly is up to you. We can control our minds and our reactions. Five years from now this will be a terrible memory. 10 years from now it'll be part of the flow of life. In 20 years, you'll be too happy to think of it.

And if the worst happens? You'll find it. Mets doesn't keep itself a secret.

Let me tell you that I had decided to do all those things before I was finished with treatment. I had a very popular blog that I was going to shut off, I was not going to talk cancer anymore, was going to turn my back to it. I had dates set to do different things. I was determined not to live my life as a cancer patient/survivor whatever. I was going to put it behind me. And, sadly, I am in the minority that got mets, and quickly too.

But I have to tell you that those four months after treatment ended and before I found my mets were wonderful. I had hopes and dreams and a future. I didn't have to go to the doctor every week! I didn't have to take tons of medicine, feel pain and sickness, watch the sad eyes of my child as he sees me decline. I got to think I might see marriages and grandchildren and grow old with my husband, watch him golf, watch my wrinkled skin get tan.

Don't take that away from yourself before you have to.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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