HER2 Support Group Forums - View Single Post - Went for mammo and cancer has returned...

CoolBreeze · 09-01-2014, 08:56 PM

As the other ladies have said, it isn't Stage IV if it's not in an organ or bone, you would be IIIc. I wouldn't want women like thinkpositive to get scared or be misinformed.

I have a friend who was diagnosed IIIc almost five years ago now - like you, she had it in her lymph nodes as well as her chest wall. She is doing fine now. She's been on lupron but is about to finish that up. (She's young).

As for being on treatment forever, that's just not always true even for Stage IV. My doctor has said that if I remain NED as a person with Stage IV cancer for a year on the therapy I'm getting now, we may stop it. Perjeta is such a new drug that we don't know what long term effects are.

My cancer spread to the liver; I had a liver resection, a liver ablation, SBRT, 7 different chemos, and Perjeta/Herceptin is what made me NED. And I have a chance to be off treatment, so you certainly may get that chance!

The theory of cancer cells spreading through the body is not one that is proven. In fact, there is a term called oligometastases which means that even in metastatic women, cancer may only be growing where it landed and isn't necessarily everywhere. And, I may fit that category as cancer has never spread beyond my liver. The truth is, there is still a lot of unknowns about the mechanisms of metastases.

I don't think it is wise for any oncologist in 2014 to predict any long term prognosis for anybody in any stage of disease, with the exception of those in the last few months of life. There are so many new, effective treatments coming up - these days, you never know. I certainly never expected to be where I am today and there is no reason this can't be true for you as well.

I hope you have relaxed into the news. I know it's horrifying to hear you have to go through it again but you do learn to accept it and manage it - I hope you are in that stage now. *hugs*

09-01-2014, 08:56 PM	#40
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: Went for mammo and cancer has returned... As the other ladies have said, it isn't Stage IV if it's not in an organ or bone, you would be IIIc. I wouldn't want women like thinkpositive to get scared or be misinformed. I have a friend who was diagnosed IIIc almost five years ago now - like you, she had it in her lymph nodes as well as her chest wall. She is doing fine now. She's been on lupron but is about to finish that up. (She's young). As for being on treatment forever, that's just not always true even for Stage IV. My doctor has said that if I remain NED as a person with Stage IV cancer for a year on the therapy I'm getting now, we may stop it. Perjeta is such a new drug that we don't know what long term effects are. My cancer spread to the liver; I had a liver resection, a liver ablation, SBRT, 7 different chemos, and Perjeta/Herceptin is what made me NED. And I have a chance to be off treatment, so you certainly may get that chance! The theory of cancer cells spreading through the body is not one that is proven. In fact, there is a term called oligometastases which means that even in metastatic women, cancer may only be growing where it landed and isn't necessarily everywhere. And, I may fit that category as cancer has never spread beyond my liver. The truth is, there is still a lot of unknowns about the mechanisms of metastases. I don't think it is wise for any oncologist in 2014 to predict any long term prognosis for anybody in any stage of disease, with the exception of those in the last few months of life. There are so many new, effective treatments coming up - these days, you never know. I certainly never expected to be where I am today and there is no reason this can't be true for you as well. I hope you have relaxed into the news. I know it's horrifying to hear you have to go through it again but you do learn to accept it and manage it - I hope you are in that stage now. hugs __________________ http://butdoctorihatepink.com 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.