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Ogliomestatic Disease

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Sara0414 View Drop Down
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    Posted: Feb 05 2017 at 8:51pm
Has anyone been diagnosed with Ogliomestatic Disease (5 or fewer mets) with any luck of achieving NED? If so, how long did you sustain NED and where was your MET?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Elpida Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2017 at 10:44pm
Hi - I am ER/PR positive but was diagnosed Stage IV de novo with oligometastatic disease  - 1 pelvic bone met. I have been NED since July 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara0414 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2017 at 12:08pm
What treatment did you do for it? A lot of doctors don't recognize the term because most Stage IV isn't caught early. Mine was accidentally but now they don't even know if it was cancer or not.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nslay Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2017 at 9:20pm
It looks like I am being diagnosed with Oligo-Metastatic Breast Cancer (OMBC), as far as my diagnosis has progressed, at this point (biopsy last week). I have only one nodule in the lung on my CT scan, but I haven't had my PET scan, yet. If the PET confirms that this is OMBC, then my oncologist says I will have surgery followed by chemo.

I would like to hear from anyone out there who has been treated for OMBC: their experience of treatment and their outcome, so far.

Thanks.
Nancy

-----------------------------------------
May 2015: TNBC dx of R side. Chemo, double mastectomy in 2015. Radiation Jan 2016. June 2016 dx w/pneumonitis secondary to radiation tx.
April 2017: TNBC of 1 nodule in R lung. Waiting for PET in May 2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote atlhoosier Quote  Post ReplyReply Direct Link To This Post Posted: May 08 2017 at 3:40pm
Sarah, I am curious, what makes them now unsure?  I just found out last week that a lung nodule that I have is cancer, but they can't tell what it is yet--either breast or lung. We have been watching this spot since December when it was first discovered, and it grew from Dec-Apr, however it did not show as hot on the PET that I had in Dec.  I am scheduled to have another PET this week.  My onco has never seen a single nodule in BC mets.
DX Jan 2014, 37yo
TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins

2017 - Mets to lung (single nodule) & sacrum
1st line(current): clinical study w/ taxol & reparixin (may be placebo)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara0414 Quote  Post ReplyReply Direct Link To This Post Posted: May 08 2017 at 9:13pm
Actually, I have met several people that had a single met or 2 and are doing quite well that were tnbc. Rose Penney being one. Look her up. My onc said it is rare to catch mets so early. Typically, patients become symptomatic and they find it has spread all over when discovered. So I am not surprised your doctor has never seen a patient with a single met. My doctor said with catching it (if it truely icancer) then it will be easy to control and get back in remission. Mine is in the chest wall (2 lymph nodes) which is why right now they are saying Stage 3c . They didn't bronch the paratracheal lymph node until after I started chemo so when tested tit was necrotic tissue. With the lack of evidence they can't say is I am truely stage 3 or 4. They really don't know if it is cancer or not but either way they think they will get it all. My pet scan on March 1 showed no sign of cancer after 4 cycles of AC. Now I am doing 12 cycles of toxyl and carbo. As my onc said we are just mopping up the mess now then we will top it off with radiation. My biological changed too so it is important for them to test tumor. I went from tnbc to 15% estrogen positive. Low but I will go on a hormone inhibitor for 5 years as well.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote atlhoosier Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2017 at 12:13pm
So I'm confused on why they don't know if it's cancer or not.  Can they not biopsy what they are seeing?  For mine, they did a biopsy, and confirmed it is cancer, but they can't tell what kind it is yet.  Still waiting on slides from the prior hospitals, which is getting frustrating.  Is the lady you mentioned on this forum?  I will try to look her up!
DX Jan 2014, 37yo
TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins

2017 - Mets to lung (single nodule) & sacrum
1st line(current): clinical study w/ taxol & reparixin (may be placebo)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RosePenny Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2017 at 6:23pm
Hi
I was diagnosed originally in 2011, stage 3B. Triple negative, three lymph nodes cancerous. 
Double mastectomy, radiation and chemo. 

2013, single met to the lung. Lung lobe removed.

Ct scans every 6 months. 

I have been consistently clear in each CT scan for four years. Blessed. 

There is hope. 

hugs Rose
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nslay Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2017 at 7:01pm
That is very encouraging.
Thank you for replying and encouraging me.

Nancy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nslay Quote  Post ReplyReply Direct Link To This Post Posted: Jun 27 2017 at 12:49pm
Hi again, Rose.

If you don't mind, I wanted to ask you a couple of questions about your treatment when you had the metastasis to your lungs in 2013. You said you had a lobectomy. Did you also undergo chemotherapy? If so, which chemo drugs were used?

If not, what reason did your doctor give for not doing chemo? Possibly due to only one nodule?

Thanks. I'm glad you continue to be cancer free.
Nancy



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Post Options Post Options   Thanks (0) Thanks(0)   Quote RosePenny Quote  Post ReplyReply Direct Link To This Post Posted: Jun 27 2017 at 4:59pm
Hi
I had chemo, surgery and radiation originally. 

When the met showed up in my lung, I decided on surgery with my oncologist's agreement. He felt (and so did I) that, since the chemo had failed to prevent a spread, if I only had one we might stop it at that point. Surgery would eliminate the met we could see. I had a ct scan and a Pet scan to double check that there was only one. Chemo is hard, and we both decided that it would only used from now on if/when we found any mets, not as prevention. I have had scans every 6 months since then. I have known other ladies to do chemo and achieve showing Ned that way. I have also known ladies to use radiation as their choice, and achieve showing Ned. Some like myself wish to reserve chemo for when mets show up, and others do a course after their surgery or radiation to hopefully prevent mets. Personal choice for surgery over radiation. My original lump was close to my heart, and I really don't want to use radiation again unless I have to. Plus the CT amount may be low every six months, but I really don't want to add to it if I have an alternative. 
hugs Rose

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nslay Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2017 at 6:08pm
Hmm. I see your thinking on this, Rose. I did not have enough knowledge/experience to consider choosing whether to use chemo for prevention after the surgery or to use it only for a new metastasis, in the future. My oncologist also did not offer this choice. This continues to help me see that we all have to be our own advocates and that the more we know, the better.

Perhaps I should have asked my oncologists more questions.

In the future, I might make a different choice in the same circumstances, if faced with a similar situation.

These forums are important or all of us to learn from each others experiences.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2017 at 7:40am
Hi..Hello to everyone.This board is looking quite helpful for me.My mom was diagnoSd with stage 3 tnbc in 2015.Now in her first ct scan that was ordered by her onco when she was feeling pain during urinnation captured her lung with a single 4mm nodule.Now they said that there is no need to follow up tha nodule.They are even reluctant to order her a pet scan.The pet scan that captured a single nodule was oredered on june 2017.I am afraid please help.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2017 at 7:41am
Sorry that was a ct scan which capture der lung nodule.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote atlhoosier Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2017 at 9:15am
Hi Katie. If I were in your mom's shoes, or in yours, I would at least ask for follow-up scans on that nodule in the coming months.  I understand that it is scary; the first time I was told I had some spots on my lungs was in December 2015, it took me a few days to get it together.  My onco's office explained to me that they could be scarring from prior infection, or just the crap that we breathe in, in general.  It was really hard, but I had scans every 6 months, and a year later was when the cancerous one popped up.  I pray that doesn't happen to your mom, but I would press on them to do ct scan follow-ups.  I didn't do a new PET until December 2016, when the new, big one showed up.  Even then it didn't turn up as "hot", so they were still not sure if it was cancer or not.  I waited until April 2017 to have another CT scan and at that time it had grown, so I was sent for a biopsy to confirm it was cancer.  Then I started chemo in June.  It is responding, praise God!
DX Jan 2014, 37yo
TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins

2017 - Mets to lung (single nodule) & sacrum
1st line(current): clinical study w/ taxol & reparixin (may be placebo)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2017 at 1:02pm
Katie,

After treatment for my recurrence, my onc ordered pet/ct scans to see if I was still in remission.  On one of those scans, a 3mm lung nodule showed up.  They thought it was probably nothing, but did order a scan 3 months later to be sure.  The next scan showed the lung nodule gone.  If they had not scanned again, I would have gone crazy worrying that it was growing and no one was looking at it.  I'd definitely push to have another scan just to make sure it was benign and not growing.  Just my two cents.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara0414 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2017 at 4:41pm
So what do you guys know or think about this.... My paratracheal node that lit up on pet scan was never biopsied until after 2 rounds of chemo. It was necrotic tissue at time of biopsy. The biopsy couldn't determine treatment effect either. During treatment, th node never changed size. Never got bigger or smaller but hasn't lit up anymore on scans. Doctors keep saying they are not sure if it ever was or wasn't. Frustrating to say the least! What have you guys heard about size? I was told from one place it was likely benign due to it never changing sizes but other doctor just say they don't know, that we just need to keep an eye on it....
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Post Options Post Options   Thanks (0) Thanks(0)   Quote katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2017 at 12:12pm
Thnq Donna and Atlhosier for your precious repkies.I would sure ask for a follow up scan.But in the meantime my mom is having lower back/hip pain from one month on and off.Now i am going to see her surgeon ad request for a bone scan or pet scan of whole body because she never hadany pet scan till now.She could not bend in the morning time and the pain subsides with movement.I am really scared about all this please support.
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