Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Carol Ann;

FYI my nodes were negative too but being that her2+ cancers love to travel, a 1 cm tumour was found by my oncologist on physical exam in my supraclavicular node. This staged me at 3c and allowed me to have chemotherapy. At that time her2+'s weren't automatically given chemo if no spread was seen to the nodes. I was lucky he found it but it also made me realize that you can never be too careful with this type of cancer. Also, my daughter tells me that hormone positive cancers tend to be the ones that recur after many years. Obviously this doesn't apply to everyone (thank god).

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Hi Cathy,

Of course you are absolutely right, and one of my big dilemmas is I had 2 tumors, both ER+, one lobular, in each breast. How does this affect things? It certainly all factors in, especially as you say the risk for ER+ coming back doesn't go away and they can and do recur after many years. As unfortunately you know all too well. :(

It all totally sucks!!!! I am so sorry again you are having to go through this.

However ... if staying on Arimidex past the 5 year point is barely going to make any appreciable difference anyway in the risk of either cancer recurring/mets, even given the fact I've had 2 tumors vs 1, etc, well then why subject my bones, etc to the other risks associated with Arimidex itself?

If it doesn't lower my risk in the end, why stay on it? The article Laurel posted a few posts back here gave some new stats about how going past the 5 year point is working/not working.

And I need the hard stats to ultimately make this decision. The real numbers.

I apologize for hijacking your thread by bringing all of this up!

Carol Ann

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Carol Ann;

I really appreciate these discussions as they are helping me get back into the swing (OMG) of research again. I originally had a grade 3 tumour which with the her2+, ER+PR+ would have it as a luminal B which has a slightly worse prognosis than luminal A's. I was on arimidex for six years which at that time was pushing it as it was 5 years standard. I had a hard time with herceptin and had to go off of it a few times for the heart impact. I really wanted to be on arimidex immediately after I found out about the ovarian cancer and in my heart of hearts I believe it would have had a positive effect. This is because it's a target and having an aggressive cancer (both the breast cancer and ovarian cancer were grade 3 so both aggressive) I felt I needed to be protective at that point. I guess we have to each individually look at the pathologies and decide which is best. I do have osteopenia in my back but it doesn't bother me. I'll find out what happens going forward on Friday.

Cathy

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Cathy,

I am so sorry you weren't able to get the Arimidex when you wanted it.

Praying you have a clear plan in place going forward on Friday.

Yes, each individual pathology makes so much difference.

Please know we are all rooting for you!!

Carol Ann

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

I have had a meeting with my new oncologist. I really liked him and felt confident in him which is important. My tumour is now Her2-. I asked him why this was and he said that all tumours hold a variety of cells and the herceptin I took got rid of the her2+ cells. It is still ER/PR+. I haven't looked at the other pathology but am going to register for mychart online which will allow me to look at my entire file, including pathology, scans, comments etc. online at home. He believes there is definitely some weird mutation going on and is having both my ovarian tumour and this one genetically tested. I was so happy to hear this and it is free. I am not starting with chemo but rather a new drug called palbociclib (apparently very effective for hormone positive advanced cancers which are her2 negative) along with letrozole. This new drug palbociclib has only been available in Canada for two months and is $10,000 a month. He is arranging for it's payment so it will be free. I will not have to pay for the genetic testing or the drugs and am very happy with that. I am also seeing a geneticist at the hospital on the 27th who will be testing me so I seem to be covered all round. He thinks that given that my cancer didn't come back quickly I could respond very well to this new drug and will be on it as long as it works. He thinks eventually I will need maintenance chemo.

A couple of other things came up as well. My ca125 continues to raise and there remains fear that I might be having a recurrence of my ovarian cancer. He, along with a OBGYN oncologist will be monitoring this as he said that would require some creative treatment. Palbociclib is a pill. A side effect is that it stops the growth of your blood cells so is taken for 3 weeks every day then you take a week off so your blood can recover. Ovarian recurrences call for chemo apparently and another side effect of the drug is that it interferes with chemo causing it to not be effective. So we'll see. I do have confidence that my life is in good hands though. They are also concerned that the breast cancer might have spread to my bones and will be running a bone scan. I hope not. I am so grateful that I have had the backup of the her2support site as I have known so many women with these types of complications and am not as frightened as I might otherwise be.

As I find out more I will post here. He did tell me that I will never feel as good as I feel right now and that if I have a bucket list I should address it sooner rather than later. Even with this he was enthusiastic about my treatment and the possibility that I might extend the bell curve beyond the 5 year normal life expectancy. That was good to hear but I am starting to make holiday plans lol.

My best to you all

Cathy

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Cathy,

This is good news, if we may call it that, but really in light of things it is positive overall. I will pray it has not spread to your bones, so that you may begin this new oral treatment. I am triple positive, so will follow your story with interest, especially regarding this new med. Your new Onc. seems straight forward which I think helps us to see through the fear. I am glad you had a good initial interaction with him.

Your signature does not indicate that you were ever brca tested, not even when you had the ovarian ca pop up. It sounds as thought they will be looking into that now among other things. Really, they seem to be aggressively positioning you to battle this beast again. My money is on you!

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Laurel;

I updated my signature. Yes I was genetically tested after my ovarian diagnosis and they found a VUS (variation of unknown significance) on the BRCA1. This was basically a negative BRCA. I have been referred back to be retested and will meet with the doctor on the 27th of April. Apparently they have better testing now. I am also grateful that my ovarian and lung met tumour will both be tested genetically. We'll see what results all this offers. I am hopeful. I have told my daughter that I believe the trick to cancer is just to live. Eventually there will be something positive.

Cathy

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Cathy,

I agree with you and have the same mantra, just live, stay in the fight b/c new things do come along! I have all the fighters on this forum to thank for that attitude. The whole BRCA thing is still a bit of a mystery to me. Cancer has so many facets, like a many headed hydra, I amazes me that researchers discover and address as much as they do! Such smart, young people! Thank God for them!

Heading up to the great, white north this coming week to Toronto. I have not been in Canada for decades and my first time to Toronto. My son loves the city and tells me to be sure to go to a Tim Horton's (do I have that right?) for some coffee. I will be sure to say a pray for you when I do.

In your corner!

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Cathya, sounds like your onc. has a great plan for you. And it's terrific he can arrange for the new drug to be paid for.

Keep us posted and best of luck.

all the best
caya

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Cathy,

Your new onc sounds like just the doctor you need to help you deal with all of this, so glad he can get the testing etc for you! That is fantastic!

Praying things continue to be as positive as they can be for you.

Carol Ann

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Plan to live! Have fun! Be joyful! And eat dessert first if you want to!

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Cathy,
Sounds like your doctor plans to get
the best treatment for you!
I'm thinking about you and sending hugs...

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Laurel; What a week to go to Toronto! My son lives there too in the downtown so I was quick to call when I heard about the attack van. Horrible!!

Maya, Carol Ann, Donna and Melissa, thank you so much. Earlier I posted about the three things I wanted to ask my new oncologist about and one of them is a genetic clinical trial called OCTANE. Well it turns out he is the principal investigator for that study. So glad. I thought it was very interesting that my tumour is her2- and his explanation for it that herceptin had taken care of the her2+. I'm going to be very interested in the updated genetic analysis and will post here.

Thank you so much for your thoughts and prays. I will keep updating here anything new I learn.

my best to all,

Cathy

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Cathy,

That is even MORE good news abut your new onc!! YAY!!!

Praying for you every day!

Carol Ann

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Hi;

I saw the geneticist yesterday. My oncologist is getting my tumours (ovarian and lung) genetically tested and he said that will take 2 months. In the meantime the geneticist yesterday is excited as there are many more tests to be run on my DNA than the last time I saw her. Because these tests are not available yet in Ontario she is sending my DNA to the US to be tested at the governments expense (can't remember where but if I do I'll post it). It is a 17 panel test of actionable mutations. It will take 3 months she thought. I'll be curious to compare the tumours with my own DNA to see if there's any overlap...or even if there's any mutations from this group. She doesn't think the VUS on my BRCA1 will be identified.

Talk soon, take care everyone and thank you,

Cathy

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Hi Cathy,

This is great that you are able to have so many more tests done ... praying this leads to an even more individualized, harder hitting treatments for you to knock the mets out!!

Carol Ann

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

I’m curious as to why so long for results? I thought it takes them a couple weeks - but 3 months seems excessive. Even if your samples have to go thru customs that’s a long time to wait for vital life saving info. Just ranting on your behalf?! Sending big hugs :-))

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

I recently got my genetics redone and it took 9 weeks for the results. I had had brca 1&2 done but they were redone along with about 20 other genes. I have a VUS on a gene called RAD 51 D. So it can take awhile

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

I guess I imagined it would be fast. Good to know, I’m considering a new biopsy. Better get on it, I suck at waiting. <3

Re: almost 14 years NED breast cancer and apparently it's back in my lungs
 

Thinking of you SoCalGal. The biopsy results wouldn't take 3 months. The pathology report would only be likely 10 days. Then they send the specimen on for genetic testing. You could learn important things from both.

Take care and so appreciate everyone's comments and opinions, bless you,

Cathy