Mass in liver

[Lauriesh]

Hi everyone,

I haven't been around for a long time. I had just celebrated my five years on March 21, 2010.

I was having pain in my lower back and pain when I breathed in. I just got back from the er and they did a ct and said that I have a mass on my liver.

I go see my onc on Wed., but I am so scared. I have 3 kids at home and I just want to be here to see them grow up.

any advice of whats next, any chance it is not cancer, any long term liver met survivors?

Thanks,

Laurie

[krisvell]

Laurie,
I hope you hear very good news on Wed.

I just had a PET scan and had to follow up with an MRI because they found something on my liver. It turned out to be a non-cancerous 3 cm growth. I went thru the roller coaster ride of waiting and not knowing. I tried very hard to think that it was nothing. Please hang in there. I am routing for you.
Kris...

[Chelee]

Hi Laurie, I'm so sorry to hear your news...I can only image how scared you are. I've been there. But it doesn't mean for sure it's cancer...although it's quite normal for your mind to go there. There are lots of long term survivors that battled liver mets...I'm sure they will be along shortly so please hang in there. Sending lots of positive thoughts your way.

Chelee

[Lori R]

Laurie,
A 'Short Term" liver mets survivor chiming in here. Short Term because I plan on being around much, much longer. But I'll get to that later.

We ALL understand that the anxiety associated with waiting for test results. It is so normal to have all the what-ifs run through your mind. We will all hope that the mass is not BC and you won't have to beat back the disease once again.

But....if you do...I wanted to offer you words of encouragement. In October, I will be 3 years from diagnosis. While I've been on multiple rounds of treatment, I've been able to lead a very full and active life. My daughter is a junior in High School and graduates next year. There are new treatments and many of us are waiting for a miracle drug to enter the market called TDM-1. So....having a liver met is NOT a death sentence.

Focus on the now while you wait for tests and results and of course...keep us posted.

Lori

[jml]

Hi Laurie~
I'm so sorry you have to deal with this, but I hope when you see your doc on Wednesday they will put you on the path to a definitive diagnosis. Most likely via biopsy, but maybe another scan or MRI will do?
One step at at time. Once you have the next piece of information, you'll know what direction to take. In the meantime, just hang in there.
I've been managing liver mets on and off for 8 years, since my primary diagnosis @33yo. I've had a lot of different chemo combos, RFA, chemo embolization, liver resection, but despite it all have managed to maintain a very active lifestyle (until recently when I started on a 5 cycles of Ixempra, which has been a real challenge).Incidentally, throughout all of this, even when the mets were characterized as "innumberable, immeasureable", I've never had symptoms - no pain, no compromised liver function, etc, so keep fingers crossed for the best.
Please keep us posted and know that we are all here pulling for you.

Keep the Faith~

Jessica

[tricia keegan]

Laurie,

I'm sorry you received this news and are so worried as we all would be. I just wanted to add that my twenty three year survivor friend had a liver mass found last year, it turned out be a benign fibroid after a liver bx.
The onc told her many people have these but most are never found, with our cancer history we get so many scans we're made aware of them.
Just wanted to throw some hope in that it may not be cancer and praying you have the same outcome:)

[Jackie07]

Laurie,

I had a scare last year also. It turned out to be liver hemangioma, a noncancerous condition.

Let us know what you find out today. Sending good vibes your way.

[jhandley]

Hi laurie
I am a long term survivor of liver mets...had a recurrence to the liver in 2005..cleared up by herceptin and taxol. On herceptin for 4 yrs..went off it for 8 months then liver mets again..back on herceptin plus abraxane ..back to NED in 8 weeks. have 2 tx of abraxane to go then will stay on herceptin.
Hang in there!
Jackie (down under)

[Emelie B]

Hi Laurie,
I am a survivor of lung, liver, lymph node and bone mets since I was diagnosed in Jan. of this year. I am currently NED from Herceptin/Taxol and Zometa. Not a walk in the park, but very doable.
Stay strong and you too, will be a survivor.
Best regards,
Emelie

[SunDiego]

Currently going through a similar experience with my wife who was just dx with bc. Already have had 2 MRIs for liver, with different contrasts to review under nuclear imaging. I'm not sure the extent of your bc diagnosis, or your personal background, but from my crash course in liver masses, it could be at least one of the following (or of course mets)...

1. FNH - focal node hyperplasia (BENIGN)
2. HA - hepatic adenoma (a rare BENIGN mass) except it can bleed, rupture or turn into HCC. Mostly seen in women with long history of oral contraception (this is what they are thinking for my 32 year old wife who is stage 1a, node negative, grade 3, HER2+++)
3. HCC- hepatic carcinoma... the bad stuff
4. mets - ??? (don't even want to go there)

Bottom line, it's been SCARY not knowing, but I've learned that MANY people have masses on their liver and other organs and much of the time they are benign. Imaging has just gotten so much better they are being found more and more.

Your pain obviously means it isn't likely very small, but those HA's can cause pain too... I've read.

Hoping for the best for you.

[Jean]

Never easy not to worry....but just reading all the wise experience of our sisters please do try to feel better.
I know it is easier said than done since being dx. everyone is concerned with the cancer returning.

Since being dx. we have more scans (as mentioned earlier) so we know more about the odd things going on inside our bodies.

We want to hear your good news as soon as you hear it.

Hugs,
Jean

[Lauriesh]

Thank you everyone for the words of encouragement.

I am back from my onc appointment, and the news isn't good. The mass is 11 cm and my onc said there is a very good chance it is cancer. I have my biopsy tomorrow morning, then will see my onc on Monday.

My onc said that I will probably start treatment right away, depending on the pathology.

I am freaking out because of the size. I assume it will be her2++, just like my original tumor, that seemed to grow overnight.

My kids are 12, 11 and 8 and I just got done telling them as much as I thought they could handle. That was probably one of the hardest things I ever had to do.

Thanks again for your concern and support.

Laurie

[Jean]

I am very sorry that your Dr. did not have better news.
Yes, the hardest part of it all is always the children.
What a difficult day for you all around.

I am keeping you in my thoughts and prayers for tomorrow. Please keep us updated.

From what many others posted they are able to beat down the nasty....please keep your spirits high and strong.

Strong Hugs,
Jean

[krisvell]

Laurie,
Darn... Please know that I am routing (praying) for you and hope you get back to NED real soon.
Kris...

[PatE]

Hi Laurie,

I am so sorry that you got bad news but please know there are treatments that can help.

I also had a liver met, my was smaller 1cm but the biospy did not show Her2. My Onc said sometimes that happens, I still stayed on Herceptin. I chose to treat my met with Cyberknife radiosurgery, it was 3 -45 minute treatments over a week. A robot delivers the radiation to the site, my liver has been clear for 2 years now. No side effects and no pain (I did get sick to my stomach once) I felt the same after treatment.

I am now battling a small lesion on my spine (L2), I had Cyberknife to that area in May. My next pet scan is August 5th so I'll let you know but I feel great. I would also ask your Onc about TDMI (super herceptin) you may be able to get in a trial. Seems like the women who talk about it on this board are very happy with it.

Please know I'm praying for you, God Bless
Pat

[Lori R]

Dear Laurie,
So sorry the current belief is that the mass is BC.

You are doing all of the right things and as you well know, the worst part is over. Deciding what/when/how to inform our children is sooo difficult. Your instincts sound right on target in terms of being honest yet cautious.

I am so glad you found this site as it is an amazing resource for emotional support and hands on advice from many who have gone before you.

When you get the final test results and a possible game plan, please come back for input. While this might be overwhelming right now, it would be a good idea to ask your Dr. about the availability of a TDM-1 trial. IF...I repeat IF the biopsy returns bad news, you would be in a good position as a first time metastatic patient. There are trials available to you that aren't available to some of us that have been on a couple of different chemo treatments.

I have a trial in mind but need to jump of the site to get the specfics. Not certain where it is being offered and with 3 children, I appreciate the need to keep things stable on the home front.

I'll stop for now ....sending you continued prayers that the biopsy confirms B-9!!!

[RhondaH]

Prayers are with you...

[tricia keegan]

Laurie,

I'm so sorry the news was not better, I'm thinking and praying for you and still hoping for a benign condition but if not, take heart from some here who have had this and beaten it!
((((hugs))))

[Patb]

Adding my prayers and please keep us updated.
Take a day at a time and breath, this isn't easy .
There are lots of women on this sight to help with
suggestions and support.
patb

[Jackie07]

Laurie,

Your doctor said 'a good chance' - he/she's not sure about it yet. When we found a mass in my liver by CT, my oncologist ordered an ultrasound to confirm it was not cancer but 'hepatic hemangioma'.

I'm hoping that you will get a good 'surprise' to find it to be a non-cancerous mass. But even if it does turn out to be cancer, we have several members here who are experienced liver mets fighters. I'm sure they will share some good tips with you.

Take a deep breath and know that we are thinking of/praying for you.

[Lauriesh]

Well, I had the biopsy yesterday, and it went as good as can be expected.

I am starting to contemplate my treatment choices, so when I meet with my onc on Mon, I'm well informed of and have an idea of how I want to approach the liver mets (if that's what they are)

I see that the "super herceptin" trial is at Mayo, which is only about an hour from where I live. I am wondering if I shoud first try Herceptin combined with other chemos that are already approved? Or has anyone just tried Herceptin alone first? That is appealing to me because of the lack of side effects. I want to keep things as normal as possible for my kids, and herceptin alone was so easy last time, it wouldn't be a big disruption for my kids.

I am also interested in cyberknife. For those of you that have had it for liver mets, were you on chemo while you had the cyberknife? I read that surgery is required, is that true? Did you have to stop chemo/ herceptin while recovering from the surgery?

I don't know how to add my diagnosis/treatment details in my signature, so here goes. Diag. 3/05- Stage 2 4.5 cm and 2+ lymph nodes. Did AC, then taxol/ herceptin, then herceptin for a year. Also did radiation. Finished Herceptin 6/06 and have been NED since then.

Thanks for any advice that you can give.

Laurie

[Lori R]

Laurie,
I am glad that the biopsy procedure is complete and went well. Ugh...A weekend of waiting.

I have more questions than answers but hope this generates some thoughts for your meeting with your Dr.

#1 "Surgical" Options
Cyberknife - My onc (somewhat conservative and I question that at times) is not a proponent of Cyberknife to the liver. The liver can be very reactive (in a bad way) to the radiation. Felt this wasn't a tried/true option. Yet there are a few on the web site that have had great success.

RFA - JML has had RFA on her liver met and had success. This process uses heat and has been used for a long time. See note below on size limitation

Cryo - This is the procedure that I've had once and will have again. Concerned that due to the size of the met, that Cryo is not going to be an option. for you My interventional radiologist prefers the met to be 3 - 5 c.m. or less. After the cryo procedure, a 2-3 week recovery period is required and my medical team follows up with "insurance" chemo.

Liver Resection - I've started to make phone calls on this option. JML (jessica) and KK1 have used this option.



#2 Available Drugs
Here is my humble opinion. I will be heading into by 3rd round of "traditional" chemo. (Taxotere, Abraxane, soon Navelbine) These traditional chemos bought me a very stable home life for my daughter. At the time I was diagnosed, she was a freshman in highschool and I prayed to be there for her graduation.

But.....the TDM-1 trials weren't in my backyard. I would have had to travel and it would have been very disruptive. Now...due to previous chemos, I am not an ideal trial participant.

Hmmmm...I think I am suggesting that you push for access to the TDM-1 trial. Others on the site can chime in, but it appears to be very tolerable and hopefully would be the silver bullet that it has been for many.

I SOOOO hope that all of this is just precautionary and the mass is not BC.

One last word of hope....I worked with a woman who was a BC survivor and she had a mass that was NOT cancer. She simply had it removed. It is NOT guaranteed to be cancer.

Sending positive thoughts for a wonderful weekend with your family.

[Diane H]

I'm sorry Laurie - am hoping still that it's not what they think.
If it is will be in there with prayers for you. Wishing you strength and peace and healing.
Hugs,
Diane

[jml]

Laurie~
Hoping the biopsy results will come back quickly and that it's not positive for mets.
You've gotten a lot of great advice re: options, if you need them.
Let me add what I know/experienced with local, liver targeted therapies...
RFA - most effective on single lesions of a certain small size, unfortunately, under 11cm's. location of the lesion also influences whether or not RFA would be an effective/curative option.
Liver Resection - likely not your first option. my docs had me beat back the disease with chemo for a year before they agreed to go forward with this surgery.
ChemoEmbolization - using adriamycin beads and shooting them into the blood vessels that feed the tumor in the liver. via femoral artery to liver- sort of like an angiogram.I had this done 4 weeks ago with good success. We were going to repeat the procedure to clean up residual stuff last week, but I had to cxl as we're prepping me to screen for TDM1 and the procedure would have been a conflict. Full of beans had this procedure x 3 and had great success with staying NED in her liver ever since.
SIRTEX - like chemoembo, but using radioactive beads/pellets inserted in the blood vessels feeding the tumor instead of chemo.
I guess one of the questions would be is the priority to address the met with just localized liver directed therapy, or should you hit the whole system with chemo again?
There is no good answer, just a matter of what works best for you, your family and your docs.
I just hope that you don't need any of these options and you'll report back to us with news that it's not what they think.
In the meantime, hope you're able to push the stress of this aside, enjoy your weekend and your family and know that you have much strength and prayers coming your way from your friends here on the boards.

Keep the Faith~
Jessica

[chrisy]

Sorry the news was not what you wanted to hear. While I am still hoping, along with you, that the final report will be better, I hope you can see from the earlier posts that there are many options for you. And that even liver mets need not be an immediate death sentence! There is much reason to be hopeful.

If it is a single lesion, even of that size, I would explore options for local control (such as jessica was discussing) as that could help you quickly gain control and possibly set you up for a long term "NED".

It willl really just depend on what options are feasible, and how you respond to that.

When I was diagnosed with liver mets (numerous, throughout my liver), my doctor advised me to "go with the sure thing" (being chemo) and maybe do a clinical trial later. Note, in my case RFA, resect etc. was not an option because of the widespread nature of the disease.

At the time, I think that was the best advice and that's what I did. That strategy worked well for me and subsequently I have participated in clinical trials including one of the early TDM1 studies. But if I was facing that initial diagnosis now, I would seriously consider getting into a TDM1 study as my first line of attack. You would be followed very closely on study, so would know how it's going and could still switch to a more chemo based regimen if necessary.

The one thing I would not do is try Herceptin alone...while Herceptin is our miracle drug, it mainly acts to stop/slow tumor growth vs. killl it; and usually in conjunction with chemo. You really don't want to mess around with liver mets - it's important to get control of that. Once you have control, you can switch to herceptin as a maintenance thing.

You are doing the right thing by exploring all your options. As you learn more, you will make the right decisions for you.

do not lose heart.

Chris

[Joan M]

Laurie,

I'm sorry to hear about your liver lesion. But before you start chemo, I would check with a surgeon on whether you would be eligible for a liver resection. That procedure would just remove the recurrence. If you don't have cancer anywhere else, you could then only stay on Herceptin.

I think several women on this board have had liver resections.

Joan

[Joan M]

PS, I believe the tumor is too large for radiofrequency ablation (burning the tumor with radiowaves). Cryoablation (freezing the tumor) may also be an option. I'm not sure about those parameters. But both procedures are worth checking into. A few women on this board have had these procedures for the liver.

Joan