From IIIc to IV with liver mets
 

Hope you don't mind if I join you. My story - Diagnosed stage IIIc July 2010. Large Tumor in left breast. Large left node. Internal mammary node and sub pectoral node. Started August 2010 taxol and herceptin every week 12 weeks. Developed skin mets on breast towards end of TH. Moved on to epirubicin and cytoxan every two weeks, which completely obliterated the tumor and mets. Surgery pathology - only residual remained in 2 nodes and in lymphovascular. All tumor in breast and skin was gone. Clear margins. Continued with herceptin until November 2011. Was on tykerb also from February to May 2011 - had to stop because of allergic reaction. Rads from February 2011 to April 2011. All docs impressed with pathology and convinced I was cured but now facing mets, so what gives?

Pet/ct last week showed suspicious mass on liver. MRI shows large cancerous tumor on liver. How could I not feel it? Biopsy next week to determine treatment.

er-/pr-/her2+++

Re: From IIIc to IV with liver mets
 

Hi Redwolf,
Well, I sure don't have the answer to "what gives", being someone who went from stage 0 to stage IV! But it is not unusual to "not feel" anything until/unless you have a LOT of tumor - enough to impinge on surrounding organs. So for now, take that as a positive. Large is a relative term, and the important thing is to take the next steps to regain control, which you are doing. The biopsy is important because you need to know what you're dealing with.

Hoping December will be better for you, once you have a plan!
Hang in there.
Chris

Re: From IIIc to IV with liver mets
 

Hi Redwolf,

I'm sorry you developed a liver met. How could you not feel it? Well cancer is sneaky. You just don't feel it. It doesn't cause symptoms for a long time. Many of us didn't have a clue. Mine was found when I was getting a mammogram for a benign cyst. I just was lucky that the palpable cyst showed up when it did. It made me go for the mammo. I didn't feel a thing.

We do have several examples of women who had liver mets and subsequently went back to NED status (No Evidence of Disease)

May you get a good treatment plan, a great team of doctors and a wonderful time dancing with NED.

Jacqueline

Re: From IIIc to IV with liver mets
 

Thanks, all. I'm curious as to what else they'll try on me. Clearly, herceptin doesn't work. I'm allergic to tykerb.

What's a liver biopsy like?

Re: From IIIc to IV with liver mets
 

I just had one a few months ago so it is fresh in my mind...

Generally they will do a fine-needle apiration (FNA) which is an outpatient procedure in which a needle is inserted through the skin into the tumor and cells are removed through the needle (like a tiny straw!). It is guided by ultrasound or CT, so they know where to poke.

It is an uncomfortable procedure (read: it hurts some!), more or less depending on where the target tumor is located. You are awake during the procedure because they need you to be able to remain still and hold your breath so things don't move around, but you will receive some light sedation and pain. killers also during the procedure. It is as I said not comfortable, but it is tolerable.

Afterwards they will monitor you for at least an hour or more, to be sure there is no bleeding, then you can go home. You'll be advised to avoid strenuous exercise for a couple of days.

Hope this was not too graphic, but you did ask. The main point is, despite the description it is very doable and you will feel fine within a day or two.

Re: From IIIc to IV with liver mets
 

Just wanted to add something on your "herceptin clearly doesn't work" comment.

Clearly, herceptin is not able, by itself, to control things at the moment. However, it may still be "working" to some degree and should always be part of your treatment regimen. There is still synergy.

Re: From IIIc to IV with liver mets
 

Red,

Even if cancer advances while on Herceptin, trials have shown that patients who continue to take the drug along with chemotherapy and perhaps Tykerb, as well if possible, do better than those who stop taking it.

I took Herceptin adjuvantly off-label during the adjuvant trials (that is before it was FDA-approved for early-stage bc), and it's the only drug I've ever taken since my cancer became stage 4 in January 2007, about 3 1/2 years after my masctectomy for stage 2 bc. And I've been NED since Oct. 2008 and continue to take Herceptin 3 three weeks.

Joan

Re: From IIIc to IV with liver mets
 

Cancer is intriguing. It amazes me that my large breast tumor was completely gone at surgery, and here I am with another large tumor, now on my liver. The Penn oncologist said that it is rare to have this sort of thing happen after a "complete response" to neo-adjuvant chemo. The good from all this is that my 14-year-old daughter is contemplating a career in oncology.

Re: From IIIc to IV with liver mets
 

Dear Redwolf,
I have been reluctant lately to post as my signature doesn't reflect a quick back to NED status for those fighting liver mets.

However, since you have a 14 year old daughter I felt compelled to chime in. When I started this journey my daughter was a freshman in Highschool. Through all of the treatments, I was able to attend all of her functions and continue to work full time. I wanted to provide you encouragement that whether it is a biopsy or some other procedure, you WILL find the strength to do it and will quickly move on and be at your daughter's next school function. My quality of life has been VERY high.

There are so many new protocals in the pipeline that once the biopsy is complete and the Drs. can confirm the details, you will be on the road to a cure. This exact moment is probably the toughest...making decisions etc.

Any questions, feel free to IM me....Lori

Re: From IIIc to IV with liver mets
 

I just wanted to send good wishes and tell you that a friend of mine recently had a liver bx and was dreading it. Thankfully her pain relief worked wonders and she felt nothing apart from a little discomfort and thankfully in her case it was a benign condition.
Sending good thoughts to you!

Re: From IIIc to IV with liver mets
 

Well, with the pet/ct, there was a 50/50 chance. Now, with the MRI, they're 95% sure it's cancer. It's in the Lord's Hands...

Re: From IIIc to IV with liver mets
 

Just in case the 95% turned out to be true, below is a thread with encouraging stories of our stage IV sisters:

http://her2support.org/vbulletin/sho...+stage+sisters

Sending you good vibes.

Re: From IIIc to IV with liver mets
 

Thank you, Jackie. I read the thread @4:30 this morning - was up with a wheezing 8-year-old (South Jersey falls are beautiful but damp). Very inspiring.

Re: From IIIc to IV with liver mets
 

The main thing I'd like to add is to suggest you NOT read the information on this site about liver mets. It is quite scary. I think it must be out of date.

I presented at Stage IV with liver and lung mets. I had numerous small lesions, rather than a large one. We have a member ("Coolbreeze") who recently had surgery for liver mets. Another member (StephN) developed liver mets while being treated. She has been NED for some time now.

Cancer is sneaky and tricky, but oncology is hot on its trail.

Re: From IIIc to IV with liver mets
 

Now I wait for a liver biopsy to be scheduled. And I feel a lymph node on the back of my neck but I assume that would have shown on the recent pet/ct if it was anything to be concerned about.

The report from the pet/ct states that there is a mildly enlarged paracardial lymph node that could be metastatic. I wonder why the oncologist never mentioned it.

The beat goes on....

Re: From IIIc to IV with liver mets
 

RE: Wheezing 8 year old
Oh yeah. I live in Delaware. It's that time of year -- leaf mold.

There is a lot you can do about your liver met. The veterans on this board are a valuable source of info.

I think it's great that you daughter is considering a career in medicine. I don't have children, but one of my nieces wants to be a nurse-practicioner and the other wants to be an engineer. I look at them with awe.