Scared of prognosis-stage IV liver mets

KsGal · 12-27-2011, 11:45 PM

Hi everyone..I am new here, and this is my first post.
My journey started in October of this year being diagnosed with IDC. Ever since then it seems like bad news every time the phone rings. First it was ERPR negative, then HER2 positive, grade 3 so very aggressive.

I had a double mastectomy, which apparently was a good decision because many tiny satellite lesions were found in the same breast that would not have been caught in a lumpectomy. I had 3 positive nodes out of 10. Geared myself up for the chemotherapy, taxotere, carboplatin and herceptin, which I was really afraid of. On the first day of chemotherapy it was put off due to a lesion on my CT scan on my liver. Went for a PET scan and it "lit up". Had a liver biopsy a few days ago, no results yet but can't imagine it is anything else considering it lit up on the PET scan. My doctor said he was "shocked". So, pretty much an immediate stage 4 with liver mets...everything I read on the internet as far as medical studies has some really grim statistics...9-11 months or similar numbers. Is this the death sentence that it feels like? Im 43 years old, I still have children at home. I was looking forward to...well, the rest of my life. Encouragement, anyone?

KsGal · 12-28-2011, 12:11 AM

I probably should have read a bit more of the forum before I posted this. I do see many of you who have done quite well with treatment for liver mets. It is very encouraging. I sure hope to be able to join your "club" and do as well as many of you seem to have done.

Lori R · 12-28-2011, 08:32 AM

Dear KS,
First of all welcome!!! We always say....so sorry we had to meet this way.

I am glad you were able to locate some immediate encouraging posts on the site. Never hesitate to come to the site and express your thoughts. It seems as if someone always has just the right thing to say to give you a boost for the day.

My message from someone that has been on a series of treatments is that most of them are tolerable and you can still live a full active life. I am still working, skiing, hiking, doing laundry (booo!!!) you know, the things we have to do to live life.

You can do this and hopefully you will be one of the many women where Herceptin does the trick for you.

Best of luck to you and your family!! Lori

NanaJoni · 12-28-2011, 08:44 AM

Dear KS - so sorry you are joining us but glad you found this site and it's wonderful members. You are truly in the scariest and toughest part of the journey - making lots of decisions in a short time and not sure of which way to go. I had a similar initial diagnosis but haven't had to deal with mets. I also did the bi-lateral mx and same chemo as you are doing. It will be a tough few months and I sometimes felt like I was on a rollercoaster but now am almost a year from finishing treatment and would never have believed that things would be this good again. Lean on the folks who love you and take advantage of all the support you are offered. Educate yourself as much as possible and don't be afraid to ask any questions to get the best answers for you. Some of my friends and family think I'm a little nuts but I often tell them that the last two years has been filled with many blessings I never expected - I hope that is true for you, too. Come here often and keep us posted on your progress toward NED ("no evidence of disease").

karen z · 12-28-2011, 11:06 AM

KS,
Also sorry to meet this way but glad you found out quickly how well so many individuals are doing who have had mets to liver, if that ends up being your situation. I am sure that some of those individuals will be posting you directly with much more detailed information. Best wishes, karen

chrisy · 12-28-2011, 11:33 AM

Dear ks
Well of course you're scared - who wouldn't be? But although everyone is different, that 9-11 month stat is in my opinion completely bogus even "statistically" (and you are not a statistic anyway) for a newly diagnosed her2+ patient even at stage IV. There is much reason to be hopeful; there are many effective treatments available for "our type" of cancer and many more on the horizon. And although your first line of attack is likely to include chemo, there are many targeted drugs out there (primarily Herceptin) which are very tolerable and have in the past 10 years dramatically altered the prognosis for her2+ bc.

True, stage IV disease is not YET curable, but it is very treatable and people are living longer with the disease as we wait/hope for the cure. In your case, even traditional, approved treatments have a great chance of kicking cancer to the curb for a good long time - but you may also inquire about clinical trials available for first line metastatic treatment with pertuzumab and/or T-DM1.(traztuzumab emtansine) as these new agents are really exciting.

In 2004 when I was diagnosed with liver mets (also shocking my doctors) the stats were (pre-herceptin) 18 months. As I approached 5 years I was literally watching for speeding buses. Now, although currently dealing with active disease again, I'm heading for 8 years with no intention of giving up. Several ladies I know from this forum are in long term remission from liver mets and quite probably "cured".

There'every reason to hope you will do well, also

Take care
Chris

BonnieR · 12-28-2011, 05:18 PM

Dear KsGal, as the others have said, welcome but sorry we had to meet under these circumstances
I dont want to give you false hope but, on the other hand, you have not received the biopsy results yet. Things besides cancer can cause scans to light up. I am living proof. Last year I had a lung light up and, during the surgical biopsy, the frozen section was deemed to be cancer. So a lobe of my lung was removed on the spot. A few days later we learned that a mistake had been made and it was NOT cancer, but pneumonia. So things are not always what they seem. Keep the faith.

chrisy · 12-28-2011, 05:28 PM

whoa. I misread your post. Bonnie is right - lots of things can "light up" on a pet scan...so keeping my fingers crossed that it turns out to be "nothing". Don't jump the gun, go only with what is KNOWN.

Raquel · 12-28-2011, 05:28 PM

A good friend of mine has had liver mets over seven years now and she is Ned and has been for a few years! True, she may not be cured but her cancer has gone into remission and she's doing well! I am stage lV also but I don't think of it as a death sentence, just a chronic problem I have to deal with. I hope your results come back negative for liver mets, I too have had false positives over the last four years on scans so don't lose faith!

KsGal · 12-29-2011, 12:11 AM

My appointment with my oncologist is tomorrow morning at 10 a.m. to find out the results of the liver biopsy. I will hold on to that tiny little thread of hope that maybe something else lit up on my PET scan. From my understanding, there was 1 lesion that was about 2.5 cm that lit up, and a few smaller ones that were "too small to tell".
thank you all so much for responding to my thread and giving me some hope. I really thought I needed to start making funeral plans. I don't really have anyone to talk to on my end of things. I am a single mom, and my children are teenagers who live at home. I don't want them to carry too much of this burden or scare the daylights out of them. ((hugs)) I appreciate you all so much