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

Apparently my stage 1 ovarian cancer is ok but my breast cancer has come back. What a mess. I hadn't been followed by a bc onc as mine retired a few years ago and I had been NED for long enough for them to feel safe in letting me go. When I was diagnosed with ovarian cancer I went to his office to see him but needed another referral as he was retired. Being seen by these other onc's I let it go. They proceeded to watch for ovarian cancer but really not pay any attention to the breast cancer as they are "specialized". Finally I saw an old school onc who insisted that I was brca1 positive and referred me back to genetic's for testing (haven't heard a word from them and it takes about a year up here) and also a chest CT to be thorough. Here are the results:

There are multiple nodular densities studding the pleural
surface of the left lung and arising from the diaphragmatic surfaces . There is
involvement of the mediastinal pleural surface. One of the largest lesions is
in the left upper lung against the lateral chest wall (series 4 image #35).
This lesion measures 2.5 cm in length. There is a mediastinal pleural lesion as
well (image #78) measuring 2.5 cm in length. There is tumor studding the
surface of the major fissure. There is no significant pleural effusion.

Apparently ovarian spread is different and usually shows first in the abdomen which is clear in my previous CT done a month or so ago. I am waiting for a confirmation lung biopsy.

NED for so many years!! We are never safe I guess. I sure hope there's treatment. I'm trying to stay optimistic as I know so many here who have lived long lives as stage 4's.

Take care, Cathy

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

Cathy sorry to read this. I also have lung mets for the past 10+ years. Keep us posted. Stay strong if you can. Xoxo Flori

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

I am so sorry, Cathy. This disease is such a sneaky bastard. Please keep us posted ... praying you find a treatment that knocks those lung mets down!

Carol Ann

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

So very sorry Cathy. Hugs and prayers to you!

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

Cathy, I am so sorry to read that you are back in the soup. Let's find you a treatment that will knock it back without taking you down.

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

Sending strength and hugs!

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

Sending prayers for you.

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

So sorry to hear this, Cathy. I hope you are able to start treatment quickly and that it is kind to you - but tough on those mets!
Best wishes..... Pam

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

Ladies, thank you so much for your thoughts and prayers. Flori, I am heartened to hear you have kept your lung mets under control for so long. You give me hope. Thank you. I am curious as to what the treatment will be. Apparently if it was ovarian cancer spread there would have been surgery but that is not expected with breast cancer. Since I've had taxol twice I'm not sure they'll give it to me again. Boy I wish things were moving faster. I will say that posting here is like coming home. I am grateful for that.

Cathy

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

Cathy,
I want you to know a friend of mine had her cancer return in her lungs after 16 years. She Was triple positive too, (now only Er positive). That's been four years ago and doing great! She still has mets in her lungs but they're smaller and she's had no progression elsewhere. There are many success stories and Many treatments available.
I'm wishing you the best!
Melissa

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

Melissa; I'm sorry for your friends recurrence and all the stress, treatments etc. that brings but grateful for you letting me know. I have my first grandchild being born in April and have been worried that I might be a big burden for my daughter right when she is celebrating his arrival and will not be able to enjoy the birth. Your post gives me great hope. I can't thank you enough.

Cathy

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

Hi Cathy, I am sorry to hear of your recent news. However I did want to tell you that I worked a a couple of clinical trials a few years ago ironically her2 bc met protocols.
We saw excellent results with the now approved treatments.
There is real hope that those lesions will resolve.
Wishing you peace and joy with the new grandbaby.

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

Sorry to hear Cathy. I'll keep you in my prayers for a quick remission period.

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

Cathya, nice to see you again, but not for the reason!
I have heard good things about the new treatments and lung mets. You will know more after pathology. But what a stressful wait for you.

Does not sound like you had any symptoms yet, so good for the "old school" onc and his precaution.

Sending hugs and prayers for peace and better news.

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

Hi Steph, yes it's been a long time. I do feel so much better being back on the board again. I can't believe it's a month from the CT to the biopsy. Seems forever to me. I'm so glad to hear from you and Linda that these new treatments are doing so well. I always did think the trick to this bugger cancer was just to live long enough for there to be successful treatments. I am so grateful for all of your thoughts.

Cathy

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

Hi Cathy,

Sorry you are back because of recurrence, but glad to "see" you again. Goodness your story is sobering for all of us. From what I understand from your initial post you were not having symptoms such as shortness of breath from your lung lesions and they came as an unwelcome surprise? You say this old school onc insists you are brca1 positive, guessing b/c of the ovarian on top of breast ca. Do you really have to wait a year for the results to confirm same? Gosh, that is a long time and it has been a month since the scan and Bx. That is an such a head-messer! Waiting is awful with this disease. I am sorry you have to contend with that on top of other things. I bet you are eager to attack these newest invaders and I hope things move along swiftly going forward so you can get a treatment initiated. I wish you godspeed with it!

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

Laurel;

The waiting is the worst! I think my problem is that oncologists here specialize and since i was a stage 1 ovarian patient they seemed to pay no attention to my former breast cancer. Delays all around. I go for my biopsy this coming Thursday then wait 10 days for results. I have phoned repeatedly and tried to speed things up with no positive results. I can't wait to start treatment knowing this cancer is not waiting for anything and is growing inside me. Thanks for your understanding. It is nice to "see" everyone again.....well, sadly not everyone.

Cathy

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

Those wheels sure do grind slowly. Bx Thursday, well that is getting your somewhere. Still, that additional 10 day wait for the results is mighty tough! Pulling for you!

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

Hey Cathy,
Sending you good thoughts and suggesting that you stay as distracted as possible, online shopping really helps :) It's so important to know what your treating, so aside from the waiting, it will be so helpful having a current biopsy in figuring out your plan. Please update when you're able. Flori

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

Hi Cathy, this is tough! Waiting is tough! I agree with the advice for distractions as you wait for the final DX and treatment plan. New towels? New clothes? In the meantime check in often for all the good advice and great support that is still ticking away here thanks to Christine and Joe. I saw your nice post about the beginning of the site.

Sending love and support��

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