Recently diagnosed

Arc1970

I just learned today that my new oncologist believes the lesions on my liver are Mets. She wants me to have a liver biopsy. I only learned about the cancer a little over 3 weeks ago. I am in a tailspin and felt like the oncologist gave no hope whatsoever. Just wondering if anyone is still active in this group.

SandiBeach57

Arc1970, I wanted to tell you that I just celebrated my 5th Christmas season since diagnosis in October 2016.

I had widespread breast cancer liver mets.

So your life is not over..just different.

Join us on the liver mets thread. Once you get your treatment, find and join that thread. I will edit to provide the link.

You are not alone..you have us.

https://community.breastcancer.org/forum/8/topics/...

moth

Arc1970, sorry you find yourself here. We are an active group.

As SandiBeach57 says, the liver mets thread will be helpful to you.

Have you scheduled the biopsy yet?

This all sucks but we get through it one step at a time.

Arc1970

I have not. I am suppose to go Thursday. I am hoping to get another doctor to look at my scans on Wednesday before I go in Thursday. I got a completely different energy from my surgeon and although I knew my condition was bad she seemed upbeat. I left the oncologist today broken.

Cure-ious

Arc1970- Consider getting a second opinion from an oncologist right from the start, could be very important for you in this case! It's kind of shocking that these docs never tell you things are going to be OK, they studiously avoid saying anything, but its just their training. There is much hope and incredible treatments in the pipeline, try to let hope replace the scary stuff..

moth

Oh I'm sorry to hear that your oncologist left you feeling so bad. Surgeons and oncologists do often look at things from very different perspectives so that might be part of it. And there's no getting away from the seriousness of a possible stage 4 dx. Even surgical options change. Still, even when we receive bad news, ideally we leave our oncologist's office with some calmness and clarity of next steps. It's very upsetting otherwise.

If there are things showing on scans that radiology is not confident about identifying as benign, biopsy is probably the best course of action as the results will really dictate treatment plans.

Do you have a tumor in your breast and do you have pathology results for that?

Arc1970

Yes I have a tumor and lymph node involvement under my arm and under breast bone. I currently do not feel sick at all. We are planning on getting a second opinion, just wondering if we should do so before or after the liver biopsy. I am actually considering getting a different oncologist as the one we saw, who came highly recommended, acted as if this was a death sentence and didn’t really lay out a whole lot as far as treatment. She is putting me on Zoladex, Palbociclib, and Letrozole. She said hopefully that works for a year or two and then left it at that. Needless to say, my husband and I were blown away as I was only diagnosed on December 14. I understand the statistics, but, I am healthy otherwise and would like to be given the chance to fight as long as possible.

BevJen

Arc1970,

I would join with the other folks and tell you to get on the liver mets thread. Take some time and read through as much of it as you can, when you can. There is great support there. But take all of this information in slowly -- it's a lot.

As for your oncologist, if you are uncomfortable with him/her, I would think about another doctor. Since it sounds like you have a biopsy set up, you might want to get a second opinion after that is done. Also, if you're having a biopsy, ask your doctor if you can get genomic testing on the biopsy sample -- it has to be set up prior to the biopsy. A sample of your tissue can be sent to one of the various companies who do this -- some big names are Foundation One, Tempus, Caris -- though there are others. Some of the larger cancer hospitals have their own genomic tests -- Memorial Sloan Kettering, for example. The genomic testing can show what is going on with your breast cancer, and what mutations, if any, are actionable via various drug treatments that are available. This may become important to you in selecting treatments.

Also, once you catch your breath, you can take a look at the NCCN (National Cancer Comprehensive Network) Guidelines for treatment for metastatic breast cancer -- these are generally what your doctors will follow in treatment outside of clinical trials.

https://www.nccn.org/patients/guidelines/content/P...

Good luck to you. I know this is a difficult time. Take deep breaths.

Anonymous

Arc - yeah, the surgeons can actually see what they are cutting out, while the MOs have to depend on scans and blood markers. You nailed the two different personality types exactly.

If you are confirmed to have liver mets, that makes you Stage IV de novo and there is a thread just for us ladies in the Stage IV forum. Its a little different from having early stage treatment and then developing mets,but it doesn't make it less crappy. We have all shared our stories in there so it may help with the shock/anger/frustration/other feels.

Her therapy suggestion is standard of care first line of treatment. There are some ladies on here (Micmel, in particular, who is de novo) who have been on this combo for 4 years+. If you are HER2+ there are some other treatments that really extend the possibilities. Please don't let the MOs attitude like you are dying tomorrow get into your head, although if you feel like you will not be able to work freely in partnership with her, then its best to find an MO you CAN work with. Are you at a large cancer center with strong research links?

I can't answer the liver biopsy question as I don't have liver mets,but logically I would think waiting until they were confirmed and then shopping around for a new MO/second opinion would be a preferred approach for me, but others may have different thoughts. Its really important though to find out what those hormone markers are (e.g. ER+,HR+,HER2- or what) because for something that is potentially out of the ordinary you may want to seek out a specific MO with experience in that area.

Finally hang in there, I know it doesn't seem like it now, but it WILL get better. At the very least the fact that you don't feel ill is fantastic - it took my sacrum fracturing for me to get with the program. However today, you would never EVER know that I am trundling around with cancer. I exercise, work full time, and look completely normal. It is up to you to share (if you want - I haven't) your situation with others but a lot of us are doing well.

SandiBeach57

Arc, please find second opinion. Your MO should provide you with hope that with effective treatments, you can have quality of life.

I was in visceral crisis in 2016, meaning I had multiple liver mets in both lobes. I was started right away on AC (adriamycin and cytoxan) to work quickly to kill cancer. After 3 months with liver mets stable and shrinking, I was put on Letrozole and Ibrance.

Agree with requesting F1 tumor genomic study along with biopsy. Also consider having blood or saliva sent to see if there is any genetic (inherited) component to your cancer.

We are all different; our cancers, our treatments, our responses, but there is no reason to think you won't have quality of life.

The liver mets thread is very supportive with any questions..especially with the newly diagnosed.

Arc1970

Thanks everyone! I have been looking through the Stage IV/Liver Mets thread. I will certainly be spending a lot of my time there.

SeeQ

Arc - I'm sorry you find yourself here. Biopsy before second opinion makes sense; that way they'll have complete diagnostic information. Note: My second opinion from MDACC retested the biopsy tissue at their lab.

I'd add avoid Dr. Google if you can. If you can't help yourself (I couldn't, and of course it freaked me out), keep in mind that most articles about liver mets are old, and a lot has changed in breast cancer treatment in the just the last 3-4 years.

Re your MO, I didn't care for my first MO's communication style. I find my second MO very easy to talk to, ask questions of, etc. It has made a huge difference in my comfort level.

And, the ladies (and a few gentlemen) on these boards are amazingly caring, supportive, and knowledgeable. Good luck, and we'll see you on the liver mets and de novo boards.