Plse help am I stage 4?

EshLou

Hello everyone, I was diagnosed in November 2010 with grade 3 IDC with significant lymph node involvement to armpit and collarbone reaching the base of my neck, they started me on neo chemo straight away FEC x 3 /Taxotere x 3 then the usual scans, I then had a lumpectomy and have just strated radio to breast/armpit and collarbone/neck area. The good news is I have had a complete path response to chemo and my pathology report following surgery was that there was no remaining cancer in breast or lymph nodes in armpit, no microscopic cells found out of 5 nodes and breast tissue. I have spent the last 3 weeks celebrating and feeling that I can finally start moving on, the breast surgeon was very positive about my future. I am BRAC1 and have said I want a double mastectomy in 6 months time. I went to see my oncologist yesterday who said that on my first CT scan there was what they called a small lesion (which they said not to be concerned about as it could be a bit of fat or blood vessel), since that time this has disapeared and she is now saying that it is highly probable that this was a very small met in my liver; she is now saying that despite my complete pathological response to chemo that I am now very high risk and it is "very likely" the cancer will recur within 2 yrs as i have "controlled secondary disease".  She told me she is recommending I dont have the double mastectomy as despite me being BRAC1 I should just go and have some quality time and worry more about metastatic disease than removal of my breasts. The nurse specialist and breast surgeon do not agree and state the spot on my liver is not conclusive and I am now seeking a 2nd opinion privately. They are all saying I am a unique case and none of them really know what my prognosis is, I asked her if this changed my stage to 4 instaed of 3 but she changed the subject. I am so confused, worried and feel isolated as they say I am a unique case, I am 31, triple negative and have genetic breast cancer and now my anxiety has been raised about mets to my liver 5 months after diagnosis, all beit they all agree I am in remission at the moment, does anyone have any views/advice or experience? Thank you and love to you all

hydeskate

Like you I was told I was unique case dx at 29 with triple negative stage IV breast cancer and BRAC 1 positive, I have a cousin and aunt with the same diagnosis.  My cousins all had the test and one of them was positive for the BRAC 1 gene and was told to get a double mastectomy because it would significantly decrease her chance of getting breast cancer.

Did they due a biopsy of your liver? I would definitely get a second opinion from a ONC that has dealt with triple negative/BRAC positive patients.  My doctors actually recommended just taking the one breast off and I made them take both of em off. 

I am currently NED for a little over 18 months. 

EshLou

Thank you , I'm so glad your doing well , no biopsy was done shevjusy thinks it was cancer as it has disappeared although other doctors have suggested it was a fat spot, blood vessel or shadow , I'm so confused x

EshLou

I just read your page , so wonderful that you are clear, your mum must b looking after you from where she is, love your attitude and very happy for you xx

EshLou

That should say "she just "

singlemom1

HI Ester Lou - I just wanted to check in and see how you are doing. I am also dealing with different doctors having different opinions and if is very hard.  I am so sorry that you are going through this - It sound very scary and you have the right to know what you are dealing with. I would totally support you getting another opinion from a well established doctor at a leading cancer center to help you figure this out.  My thoughts and prayers are with you!

stitchyphish

Hi Esh,

Without a biopsy, they'll never really know what the spot on the liver was.  If it's NOT cancer, you probably would be advised to get the mastectomy.  If it IS cancer, would the mastectomy really be a bad idea?  I was stage IIb when I was originally diagnosed, and I'm BRCA2 positive.  I did the neoadjuvant chemo, bilateral mastectomy, radiation, and tissue expander reconstruction (I even got nipples!).

I had a recurrence with metastases to the liver within 2 and a half hears.  Do I regret the surgeries?  Hell no.  My surgeries and new boobs have been a part of my life.  If this is something you want, and you think it will give you peace of mind, I think it's worth it.  You might have had cancer in your liver, but maybe you didn't.

I hope you find what you're looking for with a second opinion and I really hope it eases your mind! 

J-Bug

Stichyphish, with your recurrence with metastases to the liver, are they able to get that out of there or do you have to live with it spreading? I am newly diagnosed but mine is over 8 cm, so the chances of it being in the lymph nodes is large. I have a friend who has bladder cancer that has metastasized and they are not able to do anything for him anymore surgically. I just wonder at what point they make that decision. 

I agree on the 2nd opinion because I don't like how the doctors in this case are not being totally clear and forthright with their information.  

J-Bug

Stichyphish, with your recurrence with metastases to the liver, are they able to get that out of there or do you have to live with it spreading? I am newly diagnosed but mine is over 8 cm, so the chances of it being in the lymph nodes is large. I have a friend who has bladder cancer that has metastasized and they are not able to do anything for him anymore surgically. I just wonder at what point they make that decision. 

I agree on the 2nd opinion because I don't like how the doctors in this case are not being totally clear and forthright with their information.  

stitchyphish

Hi J-Bug,

Sorry it took me so long to respond.  I should check this board more often!  Surgery is not an option for me.  I don't think I've ever found out why.  I think it's because I have one large tumor near a major blood vessel and multiple lesions on another lobe.  I am going through chemo now (I'm on my 3rd different drug), so I don't necessarily have to 'live with it spreading'.  The goal is to use chemo to shrink the tumor or to get it to stop growing.  Since I am also ER+, I can use hormonal treatments once the tumor is stable.

IllinoisNative

I'm also a unique case.  I'm positive for BRCA 2...and I have NO family history.  I'm first generation BRCA 2 and the forth in history. I'm falling through all the small percentage cracks.

I'm so happy that you're in remission.  I would totally seek out a third (even forth) opinion.  I hope the chemo and the hormonal treatments work for you.  Please keep us posted.

beacon800

 Wow, how exceptionally confusing.  At this moment no one can say if that spot was cancer or not. 

How do you feel about having bilateral MX?  If it would give you more peace of mind, then I would do it.  On the other hand, considering everything, you will be having frequent scans to see what is going on with your whole body.  If something comes up, they willl quickly find it.  It seems unlikely that a breast cancer will turn up and go to an advanced stage before follow up finds it.

So, get a few opinions from some top docs, but you could try doing frequent scans of your whole body and if after a decent interval, like 18-24 months they find nothing, that might mean your liver "spot" was just nothing and bilateral MX might be just the thing to do for further prevention.  Good luck with your case and congrats on your great chemo response!!