Stopping Femara after 5 years

I saw an advertisement the other day where the doctor tells a woman that  her child has cancer, and she says, thank god, I thought it might have been something serious, when can she get her vaccines?.

We may see this as a reality in twenty years or less. They are trialing vaccines now.

Hi Dawn and Mellyb,  yes I also understand that many of the people who get metastatic cancer die fairly quickly, that primary breast cancer rarely kills, because generally it is metastatic cancer tthat makes breast cancer a fatal disease, and this is why it makes us anxious. I did not mean to suggest that this was not true. Sorry if I  was unclear.

My oncologist says the outcome of metastatic breastcancer all depends  on the molecular type of cancer (HER2+, Luminal A or B, or Basal/Triple neg or other),  whether that cancer responds to the treatment given, and where it reoccurs (and the brain is one of the least curable options).

Also that  while metastatic cancer is what kills almost everyone who dies of breast cancer, 15% are still alive 5yrs later. 

Many of these people  in the 15% live on for decades with NED (no evidence of disease)  after having treatment for metastatic cancer.As you say, they are not cured, but they do not have any active cancer in their bodies either.  Others have disease that remains stable and does not progress..This specially true of women with HER2 positive cancers who missed out  on the special HER2 targeting treatments but get it for their secondary cancers like the lady I mentioned.

And science is developing new treatments all the time..

Also all of us who have had primary cancer tumors removed by surgery have  those metastasing cancer stem cells in our bodies that haven't yet set up secondary cancers and maybe never will, but could. None of us can be sure we are cured, even with primary cancer. While we will probably live a full life, we also have the chance our disease will progress some day.

So in a way we are all in the same boat:  we either have cancer in our bodies (either primary or secondary), or we are having treatment after surgery with no evidence of disease, or we are vigilently waiting and hoping for the best.

It is hard not to be anxious with this disease.

Hi Dawn and Mellyb,  yes I also understand that many of the people who get metastatic cancer die fairly quickly, that primary breast cancer rarely kills, because generally it is metastatic cancer tthat makes breast cancer a fatal disease, and this is why it makes us anxious. I did not mean to suggest that this was not true. Sorry if I  was unclear.

My oncologist says the outcome of metastatic breastcancer all depends  on the molecular type of cancer (HER2+, Luminal A or B, or Basal/Triple neg or other),  whether that cancer responds to the treatment given, and where it reoccurs (and the brain is one of the least curable options).

Also that  while metastatic cancer is what kills almost everyone who dies of breast cancer, 15% are still alive 5yrs later. 

Many of these people  in the 15% live on for decades with NED (no evidence of disease)  after having treatment for metastatic cancer.As you say, they are not cured, but they do not have any active cancer in their bodies either.  Others have disease that remains stable and does not progress..This specially true of women with HER2 positive cancers who missed out  on the special HER2 targeting treatments but get it for their secondary cancers like the lady I mentioned.

And science is developing new treatments all the time..

Also all of us who have had primary cancer tumors removed by surgery have  those metastasing cancer stem cells in our bodies that haven't yet set up secondary cancers and maybe never will, but could. None of us can be sure we are cured, even with primary cancer. While we will probably live a full life, we also have the chance our disease will progress some day.

So in a way we are all in the same boat:  we either have cancer in our bodies (either primary or secondary), or we are having treatment after surgery with no evidence of disease, or we are vigilently waiting and hoping for the best.

It is hard not to be anxious with this disease.

I gather you want to hear about real live people's stories of what happened when they went off their homone treatment.

There is a  woman here in Perth who was on Tamoxifen for 6 years after a chestwall recurrence that was removed surgically. That recurrence appeared 22yrs after her initial cancer and mastectompy with reconstruction.

She is ER+ (estrogen receptor positive) and HER2+ (HER2 receptor positive) Because of Tamoxifen side effects, when she got to 6 years, her oncologist gave her the choice to stay on it or come off. She chose to come off. Less than 6 months later she got sick and they found she  had a dozen golf-ball sized metastatic cancer in her lungs and liver.

She then needed paclitaxel chemo again and is on Aramase Inhibitors permanently  to deal with the ER+ bit, and herceptin to deal which the HER2+ bit. I heard that almost all of the metastatic tumors had gone after another 6 months, and she is expecting to get better and to get on with life. She said because she was  ER+ ,once she went off her Tamoxifen, there was a hormone rich environment that let the tumors grow. And because she was HER2+ they grew quickly.

Is your Mum HER2 positive as well as ERpositive? because if not she is probably not nearly at the same risk as this lady. And if she is HER2 positive, has she had treatment with Herceptin or Perjeta or both? because this lady had not, so the HER2 had never been targetted. Even so, her oncologist was extremely surprised that she got this recurrence. I understand it doesn't happen often

 But also, let your mum know that people can often get good treatment for recurrences that keep them alive and living well for many years. Or even, like this lady, probably cure them.

From the other answers from members of the network, t sounds as if your Mum's oncologist is not up to date, or maybe thinks her side effects are bad enough for it to be better to take the risk and lose the side effects. Perhaps she needs to get a second opinion from a more up to date oncologist. If you say where you are, maybe someone can suggest oncologists they know who might help.

I gather you want to hear about real live people's stories of what happened when they went off their homone treatment.

There is a  woman here in Perth who was on Tamoxifen for 6 years after a chestwall recurrence that was removed surgically. That recurrence appeared 22yrs after her initial cancer and mastectompy with reconstruction.

She is ER+ (estrogen receptor positive) and HER2+ (HER2 receptor positive) Because of Tamoxifen side effects, when she got to 6 years, her oncologist gave her the choice to stay on it or come off. She chose to come off. Less than 6 months later she got sick and they found she  had a dozen golf-ball sized metastatic cancer in her lungs and liver.

She then needed paclitaxel chemo again and is on Aramase Inhibitors permanently  to deal with the ER+ bit, and herceptin to deal which the HER2+ bit. I heard that almost all of the metastatic tumors had gone after another 6 months, and she is expecting to get better and to get on with life. She said because she was  ER+ ,once she went off her Tamoxifen, there was a hormone rich environment that let the tumors grow. And because she was HER2+ they grew quickly.

Is your Mum HER2 positive as well as ERpositive? because if not she is probably not nearly at the same risk as this lady. And if she is HER2 positive, has she had treatment with Herceptin or Perjeta or both? because this lady had not, so the HER2 had never been targetted. Even so, her oncologist was extremely surprised that she got this recurrence. I understand it doesn't happen often

 But also, let your mum know that people can often get good treatment for recurrences that keep them alive and living well for many years. Or even, like this lady, probably cure them.

From the other answers from members of the network, t sounds as if your Mum's oncologist is not up to date, or maybe thinks her side effects are bad enough for it to be better to take the risk and lose the side effects. Perhaps she needs to get a second opinion from a more up to date oncologist. If you say where you are, maybe someone can suggest oncologists they know who might help.