HER2 Support Group Forums - View Single Post - Metastatic Breast Cancer and Nancy Brinker

Mtngrl · 10-16-2011, 02:46 PM

I just read this article on Komen and the Dallas Cowboys: http://www.nytimes.com/2011/10/16/bu...pagewanted=all

It quotes the announcer at the game as saying "With early detection, your chance of survival is 98%." As the article goes on to point out further down, technically that's true--for five years. But leaving out that little detail makes it a lie. Without early detection, five year survival is still about 98%. All early detection does (for some people--and we don't know which ones) is increase the number of years they know they have breast cancer. Komen wrote the copy for the announcement, and later apologized for the "error." The article also says mammography has lowered the death rate. I'm not so sure that's true either.

I understand why people want to "accentuate the positive" and I actually do think the runs, walks, and so forth are helpful for survivors. They are moving, uplifting occasions. But metastasis is like a dirty secret--at the public events and fundraisers, and in general, but it shouldn't be.

Illness, disability and death are not pathological. Everyone will experience most of those, and we are all going to die. I'm in no hurry to check out, but I realize that as someone with Stage IV breast cancer I probably won't reach a normal lifespan and, barring either a miracle or some other really bad luck, I will die of breast cancer. The more I say that the less weird or frightening it sounds. We need to talk about it. Far from intimidating me or paralyzing me, the knowledge helps me make decisions about my life and how I will live it each day that I have.

Rachel, I'm so sorry you didn't get to talk to your support group about your friend's death. And what a shock that she died so fast. That's really sad, and scary. (And I'm so sorry for her three kids). I agree that we can't simply "think pink" and wish away the rest.

Of course I don't consider myself lucky to have been diagnosed at Stage IV, but I am lucky to have an in-person support group just for Stage IV moderated by a wise, funny, smart woman. My first visit to the group, not long after I was diagnosed, was pretty intense. Three people had just had medical emergencies. One had almost died, but her oncologist (who is also my oncologist) ordered some kind of Hail Mary Pass chemo combination and they beat the cancer back. One member has been living with HER-2 positive IBC for 11 years. When I got over the shocks to my consciousness I realized that the group is perfect for me. I'm not one to hide my head in the sand. I figure you can't really make good decisions unless you have complete information. And I also realized that since all three women had lived to tell the tale (and to fight another day), that the stories were "happy" in a sense.

In the group we can be completely honest with each other. Also, believe it or not, we laugh a lot. There are smart, funny, beautiful, women in the group who are full of life and who I'm glad to know. Of course that's true of this community too.

I'm glad I found you all.

Namaste.

10-16-2011, 02:46 PM	#7
Mtngrl Senior Member Join Date: May 2011 Location: Denver, CO Posts: 1,427	Re: Metastatic Breast Cancer and Nancy Brinker I just read this article on Komen and the Dallas Cowboys: http://www.nytimes.com/2011/10/16/bu...pagewanted=all It quotes the announcer at the game as saying "With early detection, your chance of survival is 98%." As the article goes on to point out further down, technically that's true--for five years. But leaving out that little detail makes it a lie. Without early detection, five year survival is still about 98%. All early detection does (for some people--and we don't know which ones) is increase the number of years they know they have breast cancer. Komen wrote the copy for the announcement, and later apologized for the "error." The article also says mammography has lowered the death rate. I'm not so sure that's true either. I understand why people want to "accentuate the positive" and I actually do think the runs, walks, and so forth are helpful for survivors. They are moving, uplifting occasions. But metastasis is like a dirty secret--at the public events and fundraisers, and in general, but it shouldn't be. Illness, disability and death are not pathological. Everyone will experience most of those, and we are all going to die. I'm in no hurry to check out, but I realize that as someone with Stage IV breast cancer I probably won't reach a normal lifespan and, barring either a miracle or some other really bad luck, I will die of breast cancer. The more I say that the less weird or frightening it sounds. We need to talk about it. Far from intimidating me or paralyzing me, the knowledge helps me make decisions about my life and how I will live it each day that I have. Rachel, I'm so sorry you didn't get to talk to your support group about your friend's death. And what a shock that she died so fast. That's really sad, and scary. (And I'm so sorry for her three kids). I agree that we can't simply "think pink" and wish away the rest. Of course I don't consider myself lucky to have been diagnosed at Stage IV, but I am lucky to have an in-person support group just for Stage IV moderated by a wise, funny, smart woman. My first visit to the group, not long after I was diagnosed, was pretty intense. Three people had just had medical emergencies. One had almost died, but her oncologist (who is also my oncologist) ordered some kind of Hail Mary Pass chemo combination and they beat the cancer back. One member has been living with HER-2 positive IBC for 11 years. When I got over the shocks to my consciousness I realized that the group is perfect for me. I'm not one to hide my head in the sand. I figure you can't really make good decisions unless you have complete information. And I also realized that since all three women had lived to tell the tale (and to fight another day), that the stories were "happy" in a sense. In the group we can be completely honest with each other. Also, believe it or not, we laugh a lot. There are smart, funny, beautiful, women in the group who are full of life and who I'm glad to know. Of course that's true of this community too. I'm glad I found you all. Namaste. __________________ Amy _____________________________ 4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++ 4/29/11 CT scan shows suspicious lesions on liver and lungs 5/17/11 liver biopsy 5/24/11 liver met confirmed--Stage IV at diagnosis 5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX) 7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy 8/29/11 CT scan shows no new lesions & old lesions shrinking 9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex 10/17/11--Brain MRI--No Brain mets 12/5/11 PET scan--Almost NED 5/15/12 PET scan shows progression-breast/chest/spine (one vertebra) 5/22/12 Stop taking Arimidex; stay on Herceptin 6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo) 9/24/12 CT scan--No new mets. Everything stable. 3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger. 4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed. 4/30/13 Begin Kadcyla/TDM-1 8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla. 11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive. 11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion. 2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1. 2/28/14 Begin Herceptin/Perjeta every 3 weeks. 6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better. 8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid. 9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks. 12/11/14 PET Scan--no new lesions, and everything looks better than it did. 3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid. 4/13/15 Increasing Xeloda dose to 10 days on, one week off. 7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13. 10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved. 12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16. 1/27/16 PET scan shows cancer is stable. 5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans. 6/3/16 Begin Kadcyla and Tykerb combination 6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia. 7/15/16 Begin Kadcyla only every 3 weeks. 9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia. 10/3/16 Last of 12 radiation treatments to right lung. 11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone. 11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse. 11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off. 3/6/17 Scan shows progression in lungs. Bone met a little better. 3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment. 5/31/17 Port placement 6/1/17 Start Navelbine & Tykerb