Possible Liver Mets?
 

I'm two years out from my HER2+ breast cancer dx. Mastectomy, carbo/taxol/ herceptin a year, finished December '10. At that time, I started having left side flank pain. My doc sent me for an abdominal CT, which came out fine. Pain never left. A month ago I started bloating up and gained two pants sizes, and considering that I was a size 0, that is a significant percentage. My doc admitted his alarm and suspected ovarian cancer. Sent me for another CT.

I got a call yesterday from his office that he wants to see me. I asked if it was ovary, but his secretary says they found a spot on my liver.

I told her I was freaking out a little, and she said, "don't freak out." You know how you hang on every word at times like this? I keep calming myself down with it, thinking she knows something I don't. Yet, she probably was just saying what I would say to somebody - it'll be okay, even if you have mets.

I go in tomorrow at 10:45.

I know that even cancer patients have benign spots on their liver and I know about hemangiomas and cysts.

But, would a doctor call me in to talk about a spot if it wasn't mets? Would my CT be clean five months ago and now show up with a spot if it was benign?

I suppose he could be calling me in to tell me he wants to do more tests but he could have done that over the phone. But, maybe he thinks said tests require explaining.

I guess I want to know what other patients have experienced with their mets diagnosis. My anxiety level is pretty low most of the time but it's spiking right this second. As I said in my recent KevinMD article, we have to live with this awful uncertainty. It's a new lifestyle almost, these ups and downs.

My symptoms are bloating, feeling full quickly, not much appetite (although I do eat) and oddly, weight gain, all in my belly. I have pain on a 4-5 level on my LEFT side, and have for months.

If you've been through anything like this, I'd appreciate your insight.

Re: Possible Liver Mets?
 

Ann,

I don't have the symptoms except the discomfort I feel sometimes from the hemangioma in my liver.

But I do understand how you feel after getting the call from the doctor's office. The secretary was not supposed to have told you what she knew - she's not the doctor (I learned this in 1990 - both before and after my life-long brain tumor was diagnosed.) But either way, it's hard to get rid of the anxiety.

I will be thinking of you tomorrow morning at 10:45 am.

Re: Possible Liver Mets?
 

I have had decreased appetite and feeling of fullness when my liver mets are getting bigger. I don't have pain though. I am hoping very hard it is cysts or hemangiomas. If it is mets there are lots of treatments out there, so it is a manageable if undesirable condition. By the way I love your blog.
Hoping hard from the other side of the world,
Trish

Re: Possible Liver Mets?
 

Ann, I had no symptoms. My CA15.3 raised from 25 to 28 and then to 30. Almost nothing but I jumped up and down to have a Pet/Scan. My onc said OK to reassure me and didn't believe one minute I would have mets. My blood tests for the liver were normal. I was more than 4,5 years after initial diagnosis. The Pet/Scan detected the tumors and I then had MRIs of the liver. It's my story and everyone is different. I hope you can understand quickly what is causing the pain and the bloating. The left side doesn't sound like liver but it is necessary to check. Keep requesting exams until the doctors sort it out. I hope it will turn out to just minor digestive problems.Hugs. Michka

Re: Possible Liver Mets?
 

Hi Ann,

I just wanted to let you know I had liver mets twice with none of the symptoms you are describing. I know that doesn't help much, but try to stay focused. No matter what happens you will be ready for the next step and we are all here to help you.

Sending lots of hugs and prayers. Please let us know how you are doing.

Re: Possible Liver Mets?
 

As Michka pointed out, it would probably be good to get an eye to thigh PET/CT to help sort things out. If they want to biopsy the spot, might be worth discussing sampling enough for chemosensitivity test should that be appropriate.

Re: Possible Liver Mets?
 

Scary time - but take some deep breaths. I had very few symptoms with my "too many to count" liver mets.
Only a slight discomfort in my right side.

Have you had the CA-125 blood test that can help detrmie ovarian cancer? There is no single test for that, but they may try to aspirate if there is fluid in your abdoman.

I am sure they will figure out what is happening, but the prospect for further treatment is always a bummer. We will be here with you.

Re: Possible Liver Mets?
 

Ann,
I have nothing to add in regards to Possible Liver mets.
Only wanted to reach out and wish you well and let you know I am thinking of you -

Best Regards,
Jean

Re: Possible Liver Mets?
 

I am sorry to hear that you are faced with pain and the associated anxiety.

I have had to battle a recurring liver met. Although my Onc would poo-poo my complaints, I did have a burning sensation on the left side. She kept encouraging me to take Pepcid AC.

Ultimately, the left lobe of my liver was removed.

I don't want to add any additional stress, but I wanted you to know that the left lobe of your liver does extend over further than even our Drs. realize.

We have a strong liver mets support team here and many have had great results with knocking back the beast if it should occur.

Wishing all the best....Lori

Re: Possible Liver Mets?
 

Ann,
Just sending along positive thoughts, prayers and support. I sincerely hope that things will be ok.
Hugs and love,
Kris.....

Re: Possible Liver Mets?
 

Hope all is well with everything. My thoughts are with you!

Re: Possible Liver Mets?
 

Sending my good wishes also :)

Re: Possible Liver Mets?
 

Thank you for all your support, ladies.

It does, indeed, appear to be liver mets. There are two of them, one 2.4 cm and one 2.0 cm. They are rushing a biopsy through, and once that confirms cancer, he's doing a PET. He won't define it as cancer for sure until those cells are on a slide, but he said he has to assume that it is cancer. Five months ago, there was nothing there.

Thank goodness somebody else had left-side pain with this! Maybe that's all it is and not cancer anywhere else too. One of the lesions is in the left hepatic lobe, and one is in the right. The pain is constant, even oxy doesn't cut it.

My doctor says I'm "salvagable" if that's all there is.

I would love to hear about your experience with liver mets if you would like to share. We all imagine that this disease will come back to get us, but I always figured bones, not liver, which is kind of weird of me. I have no idea what liver mets is like or even the prognosis (and I don't want to look right now).

Does the biopsy hurt, will I have to do chemo forever, will I be bald for the rest of my life? Can I work? (I love my job.)

Re: Possible Liver Mets?
 

Liver mets: http://her2support.org/vbulletin/sho...053#post221053 Chemosensitivity test: http://her2support.org/vbulletin/sho...355#post222355

Re: Possible Liver Mets?
 

Yes. Perhaps you can work!!

I didn't have liver mets but if your disease is limited to two lesions in the liver I would ask your oncologist whether you might have a local treatment like radiofrequency ablation or cryoablation. RFA is radio waves (not radiation) that burn a tumor, and cryoablation freezes the tumor.

These processes are used mostly in primary liver cancer, but also for metastatic disease when it's limited. However, RFA and cryoablation are not standard of care for metastatic breast cancer and as a result, many oncologists really frown on these procedures.

Several HER2+ women on this message board have used these procedures and perhaps they'll add their thoughts.

My solitary lung tumor was treated with RFA in August 2008 and I have not had any tumors in the lung since then. I first treated the solitary lesion, which appeared originally in 2007, with a lung wedge resection, but the cancer recurred in the same area a year later even though I had clean margins, so I decided on the RFA the second time.

If you use either RFA or cryoablation, you could follow up with a course of adjuvant chemotherapy and Herceptin, and then just continue on the Herceptin. I've been taking only Herceptin since January 2007, never chemo since my cancer advanced to stage 4 in 2007, as I was originally diagnosed at stage 2b in 2003. I attribute this only to the fact that in each case the tumor was removed. However, I regret not following up with chemo, which was offered to me at the time -- I was to busy trying to get back to work .... That is the only thing I would have done differently, adding the chemo after the wedge resection, and if the tumor had recurred after that surgery, adding it after the RFA.

I highly recommend an RFA and doing it first, rather than a wedge resection first.

Best to you, and let us know what happens.

Joan

Re: Possible Liver Mets?
 

I haven't been online for a couple of days. I am a teacher and this is the busiest time of year! So I missed your first post...now I read the follow up. I am so sorry to hear of the progression to liver mets. Your post was so calm and clear, matter of fact. I think I would have been a bundle of tears. I can only offer my thoughts and prayers to help you get through the biopsies and plan of action. So many people here have experiences that will help you through the process. Stay strong and know we are praying for future NED!
Elizabeth

Re: Possible Liver Mets?
 

Hi Elizabeth

I work in a school too, so I know what you mean about the time of year. I'm the principal's secretary in a high school and working on graduation.

I went back to work after my news today and I think it's the best thing for us. Those of us in that environment don't have the luxury of thinking about ourselves. :). Somebody needs something from me every 15 seconds all day long so it's sort of hard to be self-absorbed. At times like these, that's a good thing.

Re: Possible Liver Mets?
 

Ann I am so sorry. I was hoping so strong it was nothing.
RFA will allow you to go back to your job much faster. It is important.
But it may depend where your mets are located. Sometimes RFA is not possible.
By discussing with your onc you may decide to have chemo after but you can also consider just targeted therapy such as Herceptin and/or Tykerb if there is no other met location. Some women are successful with this strategy. And it will allow you to go on with your life.
Stay strong. I am sending hugs. Do not hesitate to ask all the questions to your onc but also to us.
Michka

Re: Possible Liver Mets?
 

Hey - you can get your treatment during summer vacation! Like everyone else, I'm sorry you have to go through this. Nuke 'em.

Re: Possible Liver Mets?
 

Great way to spend the summer :(. the distraction of school right now is a good thing. Make it until summer then you can have your pity party! You deserve it and then pick yourself up and keep fiighting! Thanks goodness you have so many wise warriors who have walked this path! Stay strong and know we are here for you anytime.