Hello friends. I just wanted to make sure that if you are able to have this testing done, it is really important for your health and treatments that are given for your TYPE of BC. I was dx in 2016 and MBC in 2019. Ibrance and Fasoldex lated aobut 2 years. I was and still am ER/PR + and HER2low, but negative, as no amplification was found in test in Jan 2024. After my first dr changed to ovarian cancer, I was passed on to another cancer dr. NOT a specialist in BC, just an oncologist. I thought he was a specialist. In May of 2022, with my 15-3 at 70, he wanted to put me in a trial for XL092 alone or with ATEZOLIZUMAB - Tecentriq. At this time, I asked for testing to make sure my original dx had not changed. The only test he did was for the P13k mutation, which came back neg. I refused the trial because it was refused in the US. If the US did not approve it for safety issues, I won't do it, plus, why a trial when my marker is only at 70? I always believed that trials for for people that ran out of options. He told me that he did not like to pair drugs and that I had a resistance to hormone therapy. BUT no tests were done, even with my requests. I trusted him. I was put on xeloda, vinorelbine, enhertu and eribulin. In the past two years, by markers reacher nearly 5k and last Oct. I was in the ER. Finally, in Jan 2024, after he again refused to do testing an gave me my options, with more chemo meds and some weren't even realated to MBC, I changed dr's and got the tests done. I HAVE NO MUTATIONS- 35 GENES TESTED AND THE ERS1 is therefore negative. The CDK5 and 6 are also included in the testing. 5/6 petscans in 2 years, progression everytime. More damage to my bones, now head to toe. In May 2022, sternum and a few vertebrae. It is important to be proactive and standup for yourself and get the testing done, which really is protocol. My new dr is the head of the department and when I found out yesterday about the test, I just wanted to cry. I expressed my frustration against my former dr. He agreed the testing should have been done. FYI. Hope this gives you all a heads-up to help you get the right treatment for the type of dx. Luminal A is the most common and should be the easiest to treat-for an example.
NGS Test/Next-Generation Sequencing I... - SHARE Metastatic ...
NGS Test/Next-Generation Sequencing Important to have done.
So sorry for your experience with that doc, it's just So Wrong!!!I am hoping for you and with you for better a treatment outcome.
Thank you for reminding every one that we each deserve quality, informed and kind docs and to not be afraid to get a 2cd opinion and advocate for yourself. ❤️🪷❤️
Thanks Mary. Thank goodness I am healthy enough to have done so.
We must advocate for ourselves!
Exactly Mariootsi, thank you for taking the time to respond. When we try to make a difference for ourselves because our lives depend on it, we are also helping others become aware too.
I understand and agree with your fight to be proactive with your mbc dx. I'm in the UK and met a brick wall when I asked about Genomic testing for gene mutations. I was particularly concerned myself because I did not respond at all to Letrozole. 3 months of horrible side effects and progression. What a waste of time. I'm stable for just over a year on Ibrance and Fulvestrant. I never see an oncologist, usually one of the team. I'm so grateful that I'm stable, but believe in getting ahead when it comes to mbc. Also I'm ER+ PR- HER2-. I have read that being PR- is not as good as being double +. Thank you for highlighted this testing, I think everyone should have it for all mutations. I'm not sure what to do next in my situation. Best wishes.
If Ibrance and fulvestrant are keeping you stable, doesn't that suggest that you do not have any mutations that would suggest a different treatment? I had genomic testing: no mutations that have a specific treatment. I am also ER+ PR-, too bad, and I also had a bad reaction to letrozole, didn't stay on it long, but did well on fulvestrant and okay on anastrozole.
I hope I don't have any gene mutations. I thought possibly the lack of response to Letrozole might indicate something. It's good to know for sure. Treatments are being developed that target mutations, so it's another line of attack. The testing isn't readily available here in the UK & I would like the option. I'm glad you know where you are regarding gene mutations. Best regards.
Yes, terrible you cannot get the testing. I did think you were thinking the lack of response to letrozole might indicate a mutation that meant that estrogen blockers wouldn't work for you, but the response to fulvestrant that you are having and I had indicates otherwise. I did best on SERDs.
No problem. Some places in the world do not do it. However, it really is protocol and if I was not able to have it done, I would have paid to have it done. Glad you are stable. Hope that the meds you are on now will work for a long time. Blessings
That is so awful for you to have to go throughand it is hard to challenge your consultant. This new doctor sounds so muchbetter and will hopefully have you on the right treatment track very soon. Wishing you the very best of luck.
Jackie x
Thanks Jackie. Can you imagine? I hope the new dr is on his toes as he is the head of the oncology department. I brought this up to share because I don't want others to suffer too.
That’s really kind of you and will help others, I’m sure. That’s what we do so well in this group x 🤗
It is this forum that keeps me sane. I thank God all the time that I found it. ;-))
You bet, but tell me you do not have an oncologist? I am in Spain and I have my primary and an onc. It is really important to have the testing done. I know another lady in the UK and it is like pulling teeth to get tested. I would pay a clinic to do the testing.
Hi Hopeful
Thank you for sharing. Is the NGS test you are referring to the same as what I know to be a liquid biopsy? This tests for mutations.
Ive been told it should be repeated upon each progression to look for new mutations.
Hi Elle, It is the (NGS) commercial TM Focus Assay kit. Yes, I believe so. Not sure why they did a painful bone biopsy on me instead of using just blood. I had 2 small tumors growing on my back ribs in July of last year that could have been tested too. My de was on vacation and I had another that ordered an xray, which she said showed nothing. Well, you can feel it! I am not a dr and have common sense that perhaps an ultrasound could have been done, but was obvious they were tumors and a very simple biopsy could have been done back then. When I dr got back he too felt them and I was like ok, can't we test them? Incredible. We must be persistent. neogenomics.com/diagnostic-...
I am so very sorry that you have gone through all of this and sad that your doctor did not listen to your requests. I'm glad you found a new doctor now and hope that you will find success in a treatment protocol. Sending you hugs and prayers.
Thank you so much for taking the time to reply. It is a real pity. I too pray that my new dr will step it up. Blessings
I'm happy you found the strength to advocate for yourself about the testing.! I , too, have had an experience of having to advocate tests before making a treatment plan change. During the Summer of 2022, I had a recurrence on a new bone after having been NED for 5 years. The oncologist ordered a blood biopsy test and did not want to wait for the bone biopsy results to confirm there was a metastatic recurrence. She pressured me to start new drugs without the biopsy results confirming a metastatic recurrence and possible mutations. She also wanted me to start the proposed drugs without a meeting with her to discuss and and ask questions about the proposed treatment plan. I insisted on waiting for results and using them to determine the new treatment. I lost a lot of respect for this doctor because of how the recurrence was handled and ended up leaving and going to a different oncology practice. I'm glad you found a new oncologist who is on the same page with you about testing.
Thank you so much for your reply. This is the reason I felt it was not right. Not only testing, but also doing heart tests for an example. Enhertu states monitoring before, during and after. Some are very specific about this. I only had it prior and a valve is only at 57%. Dr. refused to continue with checks. So, I asked my primary and have an appointment for April. Like you, I'd rather be safe than sorry. Good for you!
I hope that getting all this information down on paper has been cathartic for you as your frustration is palpable. There are a number of things that don't make sense to me such as when you said your oncologist tested you only for the pik3ca mutation. That is unlike any other genomic assay I have heard off...when they test they always test for multiple mutations. However what he may have meant is that the only mutation that was actionable was the one for the pik3ca mutation which we know is Piqray only at that time.
I am very happy that you after asking to see the head of the department and calling out your previous oncologist that you were able to have access to the NGS next generation sequencing(the squeaky wheel as we call it) . However I can't tell from what you have said what benefit it has gained you as it showed no mutations have actionable drugs available. Don't get me wrong...it is great to have these tests if you can get them. Many of the ladies on this board such myself can only access these genomic tests if we are willing to pay for them...I know it costs $7500 Canadian. Back in 2021 my oncologist suggested a possible trial which at the time I had no plan to participate in but she said it was a way of getting my previous breast tumor tested so I agreed. They tested for 133 gene mutations and I was negative for all of them. Had I paid that enormous fee, I would have been frustrated.
So for many of us our MBC (particularly those of us that remain ERPR+ HER2-) will be treated in a general pattern once we get past first line therapies and standard chemotherapies will be the norm.
I 100% agree we all have to advocate for ourselves but there are limits to what many of us can access freely, particularly in government funded healthcare systems which have to put limits on what each patient can have in order to provide equality across all cancer types. However stressing about the past and the what-if's is not good for your mental health. Move forward with your new oncologist and work on building a therapeutic relationship...that energy will serve you much better. Take care and thanks for sharing. Many of the ladies at least in the USA will get benefit from this post.
The benefit it gained her was that her previous oncologist decided she had the ESR1 mutation with no evidence (and that was driving her crazy - why did he think that?) and was not using the standard treatment for ER+ HER2 - because he thought they wouldn't work for her. Instead, he put her on chemotherapeutic treatments that were not appropriate, did not check her mets, and were brutal on her body. Now, with the knowledge from the test that she does not have the ESR1 mutation, she can go back to the more tolerable treatments that are standard of care and they might actually work.
I would say more than frustration would be a natural response to two years of debilitating and destructive maltreatment out of ignorance.
It is also instructive that we need to see breast cancer specialists, not general oncologists, if at all possible. For those of us in the US, we are fortunate that it is almost always possible, although it may involve travel.
My thoughts exactly. Thank you TC for our response. I thought I had posted it clearly. Thanks for the confirmation. 
Thank you for your thoughts Tammy. I posted below and I agree I did misinterpret her not having the ESR-1 mutation but most of my other thoughts have not changed. Absolutely she had a right to be frustrated, I don't dispute that but I still say that moving onward and leaving those frustrations behind is the healthy way to go. Take care.
Thank you for your reponse. Let's see, I wanted a second opinion. I'll try to keep it short. My markers when I got this dr were at 70 (15-3). He wanted to do a trial. He told me I was hormone resistant as I have stated. I asked for testing to make sure my original dx had not changed. He only tested me for the pik3ca mutation in August of 2022, after already starting me on xeloda. Endocrine therapy in general, has many different options and pairing. It is important as many have stated here, that we are proactive and advocate for ourselves and really, for others. Last Oct, I was in the ER and my 15-3 markers were nearly 5000. Now, I am at 3500. It is obvious that the drugs he was giving me for my dx were/are not correct for my type of cancer, which means I have continued with progression for two years, with long-term issues, because he would not do the testing. I want to live and be on the right meds for my dx. Indeed, I am still Luminal A, which should be the easiest to manage. My new dr. is the head of the department. He agreed with me and had the testing done. Shame on the former, for stating I was hormone resistant w/o testing.
I would not have known if I had any mutations IF I had not been tested. Being tested is to allow our dr's to make the best decision for our treatment, based on our dx. My dr. telling me that I am hormone resistant and not doing the testing and therefore putting me in distress for 2 years is just wrong and unethical. Furthermore, it is a waste of medication, hence money, that other patients could use, that fits their dx.
Most hospitals have their own pathology departments to do the testing. Let's just say that it costs $5000. That cost versus $15k for an example, for one med, for one month, out weighs the high cost of treatment. ascopubs.org/doi/10.1200/JC...
With all due respect, you stated "but there are limits to what many of us can access freely, particularly in government funded healthcare systems which have to put limits on what each patient can have in order to provide equality across all cancer types".
In the link prior, it is the first one that starts with REAL-WORLD. Yep, the real world. If you live in Canada, you could always cross the border and go to a clinic to have the test done. I would take out a loan if I had to or get a gofundmepage to have the test done. I have done the math on the drugs that I have had since 2022 and it is over $200 thousand. That is crazy.
It is not right for you to assume how you think we may be feeling about a situation. I am trying to help others with my personal experience. It is obvious from my past posts. We are all here to help, to support and to be positive for one another and not to judge.
I suggest to anyone that does not have the ability to have testing done to advocate to the system with facts in the country where they live - duckduckgo.com/?q=solti+tes...
If the information I have posted helps just one person, gives them strength and hope, then I have done my good deed for the day. Blessings..
My apologies that I have upset you. First of all I will say that I misinterpreted about you not having the ESR-1 mutation which yes should have given you an option of other standard of care hormone blockers after your first line failed. If everything you say about the oncologist who treated you is true....it would appear he was negligent and since you now see the chief of oncology there he should be contacting that oncologist to point out all the issues if for no other reason than to prevent other patients the same treatment.
I was never meaning to tell you how you should feel....all your recent posts show us that. What I was saying is that moving ahead is the only direction we can go and wasting time on frustrations of the past just doesn't seem proactive in your ongoing care. It is great and I never disputed that sharing the need for mutation testing with others on the forum is great. Many people are lay people with no medical background and may not be aware.
Yes all hospitals have pathology departments but a general pathology department does not do genomic gene mutation testing. They do test specimens of course for estrogenic status etc but not for the obscure mutations such as those offered in Foundation One etc. They may or may not do genetic tests for BRAC etc but in larger centers that will fall to a independent genetics center.
Yes I live in Canada and those ladies in the UK (mackster...who posted in this post) and I think Australia do not readily have access to genomic testing as I said before. It's not only the cost that is prohibitive, it's the fact that in our healthcare cancer care drug choices are pre-set on an algorithm simply based on what your estrogenic parameters are at time of diagnosis. Typically that comes with restrictions on what they consider designer drugs...for example I received Ibrance/Femara as my first line so that was my one 'designer option. 2nd line was Exemestane only but I had a dear friend from the USA who had 6 months of Everolimus that she had purchased and couldn't use due to progression so she sent it to me. Before that was used up, my oncologist who had been fighting to get Everolimus added was successful and I was able to continue and still am on that combo. After this fails my next stop will be Xeloda and then the various standard infusion chemotherapy drugs(Taxol, Eribulin etc.)
In reality there are very few mutations that are checked for in these genomic assays that have actionable drugs available so I kind of see their point...other than the estrogenic variables the drugs of late have been towards the AKT inhibitor pathways...Piqray, Truqap.
Trust me I am very aware of how idiotic it is and if they would only look at cost of treatments versus doing the mutation testing and offering the one if available to treat the mutation but remember this is government funded and that should say it all....we all know how slow and often ineffective change is to governments.
Anyway please accept my apologies and my sincere hope is that you will now get the treatments you deserve. I'm sure your post will give many people hope to at least ask. Take care.
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