2nd opinion about treatment change?

[Here_now]

Dear ladies, friends,

I post only rarely on here but come today looking for advice. I was diagnosed 2 yrs ago de novo with 10cm breast tumour and various mets to bones. Palbociclib + letrozole combo made everything go away, until it stopped working 9 months later and new mets started to appear on different various bones. So switched to Everolimus + Faslodex, which also gave a complete response for about 9 months. When the original breast tumour showed up again on a PET scan I was switched to Talazoparib, which I have felt very well on, much better than with the previous two lines of treatment.

I am relieved when I get a complete response, but so disappointed that each line of treatment only lasts a short while. I am not complaining but worried about treatments running out! I have a young daughter, and also worry about how I can care for her should IV chemo get underway.

Now on my last scan a new tumour showed up on my spine (SUV 4.6) but other that that the breast tumour has gone. I am gutted obviously but also because I feel almost normal on this line of treatment and I have felt I am getting my life back.

I read BestBird said to always get a 2nd opinion before any change of treatment. My oncologist has suggested changing my treatment once again to Capecitabine, which she told me is my last effective line of oral treatment before IV chemo. Do you think I should try to get another opinion from another hospital? Even if it means waiting some time before getting it?

Just for info I am treated at the Curie Institute in Paris which specialises in Breast Cancer.

How many of you get 2nd opinions before a treatment change?

Also, any other rollercoaster stories of having a complete response numerous times only to have new tumours show up shortly after?

Thank you for reading and have a great day ladies.

Faye x

[Here_now]

Ps. Will just add my CA 153 markers are 27, the lowest they have ever been!

[Lulu4545]

Hi Faye,I have read about other alternatives such as different oral SERDs, Her2-low treatment Enhertu.

They are new. I'm not sure they are a available in France - you should ask.

I also read about a French lady getting versevio as 3nd line after palbo+letro and faslodex failed.

Also, I saw some research saying that CDK4/6 could work again after a period of chemo. I believe you are on oral chemo. Versevio could be an option.

Curie is supposed to be one of the best.

I'm surprised they don't offer these options especially you have only one bone met.

An other option could also be radiation on the only met as you could be considered oligo-metastatic induced.

You should ask.

Let us know

Lovexxx

Lucie

[Lulu4545 in reply to Lulu4545]

Also, being bone-only I'm surprised they didn't offer to remove the primary tumor or what was left of it. This could of avoided it coming back.There must be a reason.

The best is to ask.

Lovexxx

Lucie

[Lulu4545]

Verzenio not versevio

[Kiss_my_grits]

I’m sorry to hear you are cycling through treatments quickly. I think a second opinion is a good idea but I’m unsure how long you’ll have to wait. I always talk to my drs about getting a second opinion and they have connected me with doctors in other hospitals with whom they consult. I’m in the US, does it work that way in France?

[Kaydub]

I always get a second opinion. It’s your health and your life and you should not feel bad about doing it. Also different hospitals have different clinical trials that your current oncologist may not be able to give you access to.

[NPmary]

Absolutely get a second opinion, your progression has all been to bone only (if l understand you correctly) not to a vital organs (brain, liver, lung). I think that is a game changer seek a doctor who understands your need for child caring and quality of life.

[Hazelgreen]

Wow! I'm impressed by your normal CA 15-3! I would certainly ask my oncologist to leave me on any treatment that took my CA 15-3 to the normal range.

I know at least two knowledgeable respondents to this site have argued strongly to not change treatments too hastily that seemed to be working initially. Both respondents had oncologists they worked closely with. They stayed on their original treatments with their oncologists' support. However, you are a decade or more younger than the two women I am thinking about, and age does make a difference in the speed of reactions. Still, if I were you, I would go with my own estimate of my well-being.

Can you not ask for a second opinion from another staff member at the Curie Institute? I don't know whether France has socialized medicine or not. Canada has socialized medicine, and it caused quite a stir at our local cancer centre when I asked for a second opinion there. However, I was glad I did. It seems to me that it is not at all unusual to ask for second opinions when privately-funded medicine is involved.

Best of luck,

Hugs,

Cindy

[TammyCross in reply to Hazelgreen]

Concur with Cindy. These two knowledgeable older women stayed on treatment unless progression was severe.. At SUV of 4.7, my oncologist calls it "stable!" That is, not high enough to merit a change in treatment, especially given that you are tolerating it well. She looks at all three indicators: clinical (symptoms), scan (most diagnostic) and tumor markers. If I am asymptomatic, she is more conservative.

Also puzzled that your oncologist is not recommending other treatments. There must be something we don't know about your cancer.

If not, if you can get on an oral SERD, I would recommend it. It eliminated all my bone mets. You would have to get into a clinical trial. I saw that there is a clinical trial starting of a new oral SERD, Don't know which hospitals are participating in which countries. Perhaps you can see which trials are being conducted at Paris hospitals and get a second opinion there.

[8576]

Definitely get a second opinion before changing. And I was only offered Verzenio after my daughter mentioned it. It was the last step before IV Chemo. After marching through the ol

[8576]

Sorry, it posted before I was done. After marching through the other treatments I have done very well on Verzenio which I have received under compassionate care so I pay nothing. It is very expensive . It apparently is the sister drug to Ibrance. Good luck!

Cheers, June S.

[Claireperth]

I’m positive that some of the other answers are definitely worth pursuing. All I have to add is that one lady had reported good results by going back to a drug after some time had passed.

[mariootsi]

Faye a second opinion is always a good idea.

[life8888]

I would get a second opinion for your own peace of mind. I certainly did after my first line of treatment stopped after 6 months. Even if the opinion is the same I've found in my experience that you learn something new that can help you, and might introduce new options you haven't thought of. It also sounds like you need to be very clear with your oncologist about your life goals. After making a list and sharing them with my onc I found the conversations to be more aligned with my priority for quality of life. Hope this helps, and wishing you the best!

[atoth17]

Hello, I ALWAYS advocate for second opinions! I got one at the very beginning of my treatment (a year ago), and was able to check in with her again at my one-year mark. We are thinking that I might have progression (I'm waiting to scan) and both doctors have differing opinions about my next line. I have decided to switch my care to doctor I received my second opinion from, I just feel like my care will be better with her as she only sees breast cancer patients (the other Onc is a general doc). Second opinions are priceless in my eyes.