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

Flori and Catherine; Haha Actually I am shopping! Plus yesterday was a big baby shower for my daughter so that was fun. Flori, I'm following all of your trials and tribulations and wishing you all the best! There's a Dr. John Bell here at the Ottawa Hospital who I started following when I was first diagnosed with bc. I'm going to check his treatments out as he is now doing clinical trials.

https://oicr.on.ca/research-portfolio/immuno-oncology/

He's the first speaker. I'll post what I learn. You just never know.

Cathy

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

Hi Cathy..Just reading your post now and wanting to add my support, love and prayers as well. One never knows, do we?

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

Thank you Mary Jo. So true. We just never know. I'm glad the biopsy is over now so next will be the results. Yikes

Cathy

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

Hi Cathy,
So sorry to hear about the lung mets. It's hard when you have new oncs to deal with at a time like this. Get second opinions or whatever. Petscan?
Hugs and love
Sarah

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

Hi Sarah; Yes, I would so love it if my original oncologist, Vince Young, had not retired. It is very disconcerting. I have been so tempted to google lung mets but this time I am really afraid of what I will find and haven't. I'm going to wait until I have the results from the biopsy. I so appreciate your thoughts and suggestions. I hope to be stronger willed soon. lol

Cathy

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

I’m so so sorry Cathy. You are in my prayers

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

Cathy,

I've been following this thread for a while and just wanted to comment on your last entry. When I was first diagnosed with cancer I made a conscious decision to NOT search anything about my cancer. My thought process on that was that not everything I found would be accurate. And even if I could find a credible website with accurate information, it wouldn't be specific to me and I know myself well enough to know that I would be obsessed about the worst case scenario even though it probably wouldn't apply to me. Someone even directed me to this forum but I came here and read some pretty scary stuff and decided I couldn't come back until after I completed chemo. My plan was to follow my doctor's orders and her questions directly rather than get my information off the internet. That approach worked for me.

My point is, I would encourage you to NOT Google information at this time because it could cause additional stress when the information isn't really specific to you, if that all makes sense.

In any event, you're in my thoughts and prayers and I hope all goes well.

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

Europa, thank so much. Knowing there are others out there even for a moment sharing my concerns is very comforting.

Lucy, I was very happy to see your post. It really confirmed what I have been thinking and I'm grateful for that. Even here I've been trying not to look around too much at this point for the very reason you said. This is a very stressful time for me and I don't want to add to it. Thank you so much for this.

Cathy

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

I'm glad what I said helped. I just know what worked for me and you seemed like you were coming from a similar place. All the best to you!

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

I haven't visited here for a while so just seeing your post now Cathy. I'm so sorry and wanted to send my good wishes and support and will be thinking of you.

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

Tricia; Thank you so much for your support. I have just heard that it is breast cancer but don't have a copy of the pathology report yet. Am trying. So much has changed and advanced (i.e. targeted therapies, genetic profiling) since I was first diagnosed that I remain hopeful.....although no longer for a cure lol.

Cathy

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

Cathy,
I've had lung mets for 11 years. Not sure my point but I guess I'm saying you can go another 11 years, lol. Ugh, just hate this beast!! I'm sure you're anxiously awaiting the pathology. At least you'll have the very latest and greatest tumor assay - which can be very very helpful in finding treatments. A friend just told me about this new drug: Larotrectinib aka LOXO-101 (a pan-TRK inhibitor)
I don't know my NTRK genetic status, but the early reports are promising using these targets and ignoring origin of disease (meaning it's for many cancers as long as NTRK 1,2, or 3 gene positive). So, there are many things "out there", although I would have to figure out a way to get fresh tumor sampling.
Sending hugs in the meantime!! Flori

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

Dang it Cathy...I’m sorry. Fourteen years. I can hardly believe it.

Sending my love ..

Mary Jo

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

Mary Jo Me too. I was totally shocked and plenty ticked off too. lol

Flora You really give me hope. I still haven't received the pathology reports but I'm going to ask the oncologist about three things:

1. Dr. Bell who I posted earlier about. He is right at my hospital so I hope they have lots of info about his research and trials.

2. Oncofocus. I found out that they will do genetic testing of your tumour within 2 weeks and the cost is 3500 Cdn. They sound very organized and offer lots of support to the oncologist and pathologist. I'm going to post some links in case you think this might interest you or others, including the email they sent me with lots of additional information

https://www.oncologica.com/dynamic-c...8&lng=en&ch=fb

https://mail.google.com/mail/u/0/?ui...2bf7e2acf4ea12

They have a live link and offer lots of information. I'm impressed and wonder if I shouldn't just pay for this service. I'll ask this Friday what the oncologist thinks.

3. An Ontario based clinical trial about targeted therapies. Here is the link

https://clinicaltrials.gov/ct2/show/NCT02906943

Flori, I'm thinking of you.

Cathy

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

Cathy I know what you mean about so many new treatments available since you (and I ) were diagnosed initially. I'm sure Flori's post helped to reassure you and I think it's a great thing that so many new therapies are available now. My friend has lung cancer (not bc mets) and is doing well five years on and while I know it's not the same I think it's wonderful that so many people are still here and doing well that may not have been ten years ago. Good luck and do keep up us posted when you know more.

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

Tricia;

Interesting that we share the same triple positive diagnosis. I notice that you took an extra 2 years of Arimidex. Great!! When I was diagnosed with ovarian cancer I asked multiple times to go back on it and wasn't able to as I wasn't being followed by a bc oncologist. So frustrating. I truly believe that it would have helped. We'll see what happens now.

Cathy

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

Cathy my Onc told me to stop at eight years due to recent studies, at ten years she said do another two years as there are more studies done. In all I only did ten years but with two years break so doubt that was a factor. I'm now told five years would have sufficed! Please keep us posted and I'll be wishing good news for you.

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

Tricia, thanks for posting about this. I am trying to find some studies online about 5 years actually being enough. But all I am finding are ones from a few years ago still recommending 10 years.

I still have one more year to go, but yes I would love to know the risk is more or less the same for 5 vs 10 yrs.

My other concern is I had 2 ER+ tumors vs one, but all my nodes were clear so I wonder how that all factors in. I will be seeing my onc in June and I figure its not too early to get a dialogue started about all of this.

Carol Ann

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

Carol Ann,

Here is an interesting (very for us hormone positive gals!) article. I think it is what you are looking for. It is a bit long, but read to the end. I found it a bit surprising!

http://www.gotoper.com/publications/...-breast-cancer

Laurel

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

Thanks, Laurel! :)

Carol Ann