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.

Re: Possible Liver Mets?
 

Ann;
Rats! I was hoping you'd get better news. You were smart to go to work; especially if you love your job.
Wishing you the best treatment option to zap the liver mets and get to NED in no time.
Sending prayers your way,
Kris....

Re: Possible Liver Mets?
 

Ann,
I wish I could provide you with a road map to get you to NED.

I fully understand what you mean about working and how it helps focus on something other than the challenges of cancer. I've been through multiple rounds of chemo and liver met related treatments and I've worked through the majority of it. I encourage you to figure out your next steps and plan on returning to work in the fall.

Hmmm...next steps. The good news is that there are so many options to choose from and they are all very doable. I was referred to a Dr. to perform Radio Frequeny Ablation (RFA) for my liver met. He opted to use cryosurgery. I did have "insurance" chemo after the cryosurgery.

I am not 100% certain if I would recommend cryosurgery , as the liver met returned. Another option is targeted radiation. I investigated this option prior to electing to have a liver resection. It too appeared very promising with very little down time.

I want to reassure you that all of these options are doable. I worked during each round of treatment, attended all of my daughter's school events.

Please keep us posted. If you have any questions, don't hesitate to PM me.

Keep the faith....Lori

Re: Possible Liver Mets?
 

Wishing you the very best and speedy return to NED status!

Re: Possible Liver Mets?
 

I just had to write to let you know my experience with liver mets. You have to know they are absolutely treatable; hair included! My first met disappeared with my original A/C, taxol, Herceptin rounds. I went NED for three years. The pesky bugger came back and I went on Navelbine and searched out every cutting edge (no pun intended) treatment the interventional radiologist could find. One by one the newest treatments (ablation, cryo, cyberknife etc.) fell away due to the location of the mass. I found a liver transplant guy who would resect me. I had the resection two years ago. I went back on Navelbine for a very few weeks after the surgery. Once I was officially NED again, I went back to herceptin only. My hair thinned a bit, but no one else really noticed. I have been NED, on herceptin only for these last two years. I have continued to work full time in all these years. I took three weeks off for my resection. I have continued to be a full time wife and mom as well. I don't have to tell you the terror of this diagnosis; however, I found stories of hope on this site and I have gained immeasurable strength from my her 2 sisters. Now you will be a source of inspiration for others. You will write your story in five years and tell another terrified sister that she will come through this and lead a rich wonderful life. I saw my son graduate from high school and finish his first year of college; I saw my daughter become a high school Pom and go to her first dance. I have been here for amazing things and you will be to!

Find a great doctor and attack this thing with all of your strength. There are so many amazing treatments. I know you will find the one you need.

Re: Possible Liver Mets?
 

I too was diagnosed with liver mets, plus bone. i had a liver biopsy and it did not hurt at all. Was sent to Moffett hospital in Tampa to see if they agreed to my onc's treatment plan.

I have started Xeloda today and have also had Faslodex shots, a real pain in the butt. But it only stings for a little bit. I am also on Zometa for my bones. Taking it one day at a time and hoping for the best.

Forgot to mention , I had had lost a lot of weight, about 50 lbs. And here I was thiinking it was nice to finally buy some cute clothes. I am slowly gaining some weight back, but I don't want to gain all that i had lost.
Best wishes , Jeanette

Re: Possible Liver Mets?
 

Ann
So sorry to read your post about the liver mets....at times i feel like "do we ever get a break"......there are so many resident experts on this board to help you deal with this setback...they have all been there and more importantly are still here.....stay strong, and know that we are all here for you.....keeping you in my prayers....this too will be behind yoefore you know it!

Re: Possible Liver Mets?
 

Thank you all for the wonderful support and advice.

I had to laugh when somebody said I got summers for my treatment - can you believe they make us high school secretaries work through the summer? There is nothing much to do but not only do they make us work, they make us work 4/10s!! At least if they put me on something that causes diarrhea, I won't have to fight a hallway full of kids to get to the bathroom. :) And, if I'm tired and need to sleep later, nobody will be the wiser. ;)

I had my pre-biopsy bloodwork done and now am waiting the call to set up the biopsy. Ideally, it would wait until after June 10th, which is graduation. But, we all know how much fun waiting is and I really want to get it done. I just imagine those suckers growing fast and I want them treated! And, like we all do, I want my treatment plan in place. Glad to hear the biopsy doesn't hurt.

I'm preternaturally calm. Not terrified, not worried for me at all.

I'm upset for my family though, especially my 14 year old son. If it turns out to be worse than I think, then how sad for him to lose his mother so early. I'll never forget one day when I was in the video game store buying a birthday present , a boy a little younger than my son was in there alone and started talking me. He immediately told me that his mother had just died of a heart attack; he asked me what I was buying and I said a present for my son. I was done with treatment then and had very short hair and I felt so sad for that boy - telling every stranger he saw his sad news - killing time at the video game store to take his mind off it - I and was so happy that my son wouldn't have to go through that pain.

I'm just so glad to know that there are treatments that can keep me around a while longer. I want very much to see my son graduate and off to college. He's an amazing student with a 4.7 GPA and he skipped a grade and will barely be 17 when he graduates. I want to see what college he goes to, take him there and settle him in. I have a 24 year old too, who still needs me -he calls me with his problems still. But, he's got his own life and he's raised.

But, oddly enough, even with those thoughts, this is a lot easier on me than my original diagnosis, even though it was stage II no nodes with a high survival probability. I guess I'm a cancer veteran now. :)

I still don't want to be bald. Like the Carcinista, I'm going out with my hair.

Re: Possible Liver Mets?
 

Cool Breeze, how did your biopsy go? I haven't seen any word yet. Hope you are doing well. Thinking of you,
Karen

Re: Possible Liver Mets?
 

Hi Karen.

The biopsy was Thursday and it was very very painful. I was surprised, as was the medical team. They gave me Versed and Fentanyl but they might as well have given me water. I now know what it feels like to be stabbed.

I wrote up a (long) description in my blog for those interested.

This is the first painful medical test I've had in two years of treatment so I guess I can't complain too much.

I get the results on Wednesday - my appointment is at 9:45. There is little doubt what it will be. I am glad to hear the stories of people who have done well. I will ask about RFA if there are still only two mets. My onc said he wanted to do a PET too, but I don't want to wait for that test to begin treatment. I hope he sets something up Wednesday - even herceptin.

I've been having lower left side back pain since November (while still on herceptin) and it has increased to the point where it is beginning to interfere with my life. It is also all across my lower back, so I fear that is also part of the disease process. Needless to say, I want to get on some kind of treatment ASAP.

I'll let you all know. Thank you for your support.

Re: Possible Liver Mets?
 

Sorry to hear it was so painful! At least it is over and you can recover. Here's to hoping the news is better than expected! Hugs!

Re: Possible Liver Mets?
 

Cool Breeze,
I am SO sorry to hear that. I'm going over to your blog now.
Feel good, my sister,
Karen

Re: Possible Liver Mets?
 

Just left a message on you blog.

What an excellent piece you'd written recounting the 'painful' experience! It should be a required reading for all medical staff so the pain control issues can be addressed and procedures improved.

We'll be thinking of you.

Re: Possible Liver Mets?
 

Thanks. Tomorrow is the day. I may even be over-prepared for bad news. I'll be shocked if it's not!

Re: Possible Liver Mets?
 

Just praying you get good news today.

Hugs from across the pond.

Ellie

Re: Possible Liver Mets?
 

I never updated this thread but obviously, I did have liver mets. Had a PET Thursday and Monday I see the onc for a treatment plan. I am just hoping it's only in the liver and nowhere else!

Re: Possible Liver Mets?
 

Wonder when this revolutionary test will be available to determine whether Herceptin is working:
http://www.medpagetoday.com/Hematolo...stCancer/27061