Please forgive me for my poor English and have to quote some of Carole’s words to express my thoughts.
I also having been a member since 2018 and have read your collective posts daily for over 3 years. I was always hesitant to write a post because of my poor English and always didn’t have good news.
After reading Carole’s post 3 days ago, I was so inspired and felt like I should tell all of you my story and maybe you will feel you are not the only one who faced the worse situation and being encouraged.
I was first diagnosed DCIS in 2012 from annual check. Having surgery to remove the DCIS tumor with a lumpectomy. Six months later, I found another lump on the same breast. End of became stage 3, ER+ HER2+. Having a mastectomy, lymph node excision, 8 cycles of chemo (red devil, Docetaxel ) 16 cycles of Herceptin followed by 6 weeks of daily radiation and tamoxifen. During regular check on 2017, became MBC, ER+HER2-. Metastasized to the other side of lymph nodes and plural. Since then, I have had eleven different treatments (Letrozole, Palbociclib, Fulvestrant, Capecitabine, Eribulin, Navelbine, etc.) and none of them worked more than a year. Two years after genetic testing, they suddenly informed me I am BRCA1 mutation. So they started to use Parp inhibitor for my treatment. Last year, I had pericardial effusion while I was using Talaroparib and all the existing lesions showed stable. They finally found out I am ER+HER2- and triple positive combination. So they started to add Herceptin to my treatment plan. Fortunately, most of treatment side effects were tolerable.
I am always positive and very active even the illness gradually taking out of my control. After several treatments, I had avascular necrosis which cause me limping. After one treatment, I had vocal cord paralysis which made hoarseness and shortness of breath when I am talking. However, I still try my best to go out traveling and hiking. Using my hoarse voice to communicate with others. I feel blessed since I am still able to live like a normal person (sort of).
Last month, my oncologist told me I don’t have many treatment options left. I was quite frustrating even though I know the day will come eventually. I am definitely not happy with this but have to live with it.
If you are still reading, thanks so much for making it this far.
I didn’t mean to discourage you by all my treatment results. It’s really different from person to person.
By reading your post every day, I feel connected because I know there is a group of people who face the same condition and understand me.
I am not giving up yet. I just try to enjoy my everyday life more. Hope you all feel the same.
Yen-Ju
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s_yenju
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Thank you for sharing your story. Your English is wonderful! You give so much hope having gone through so many treatments and you are still here and doing fairly normal things. I’m hopeful they can find a treatment for you that is effective. Please get other opinions also. You are very strong. I hope you are able to get good care for a long time. ❤️
Dear Yen-Ju, Thank you for sharing. Your English is great! Keep hanging in there. I also find hiking very theraputic and I will be thinking of you on my next hike. Cheers.
Hi Yen-Ju. I am so glad you shared. I did not even know one could have 2 different breast cancers! What a difficult journey. I'm so grateful for the research that has created these so many different treatments you have been on but cannot imagine the stress of having to change treatments so many times. I've only had my dosage lowered and was really quite anxious. Your story has encouraged me by reminding me the medicine changes are part of the journey and modelling how to handle them with grace... And a few hikes. I am so grateful that you chose to share your story and will hold you in my prayers as you continue to deal with cancer, medicine, and challenging words from doctors about both of those things. Xx Stacy
Dear s_yenju--------Good for you that you got the courage up to join us! We are sorry that you had to, but welcome you with smiles and understanding. We are in concert with you and will provide lots of unasked for advice. Here we go! Please write what kind of oncologist you go to. Is he/she connected with a hospital? Does he or she work alone or in concert with an oncology department at a hospital or university? I ask because I do not think that it is usual for an oncologist to say that there is no treatment left to try. Also, could you please tell how long you were on each drug? It seems a lot of trial and error in such a short period of time. Further, it seems hard to believe that the HER2 was not detected very early on or did I misunderstand? In 2015, I was diagnosed within a week of detection that I had bilateral cancer with Hormone Positive in the left breast and HER2 in the right breast and in the axillary nodes. After thirty-one treatments of chemotherapy and targeted therapy as well as surgery in all those places, I was declared, "cancer free". The HER2 has not returned. The Hormone Positive is what has metastasized.. To be honest, when I read your post, my immediate response was to yell at the computer,"Get another doctor!". I must apologize for this because I know nothing about your situation other that what is written above but hope you will share more even if it is difficult for you. By the way, your writing is absolutely fine and completely understandable. Further, it really good to read that you are carrying on with your life in what I would attempt to describe as with clarity and grace. PLEASE GET A SECOND OPINION! There! I said it.
Dear Yen-Ju, Thanks for posting your story. You sound like a strong person with a positive outlook even when things aren't so wonderful - I really admire that. You've been through an awful lot and still find a reason to rejoice in the moment.
I didn't find your medical history discouraging at all. This is the path we're all on and being honest about it actually brings comfort knowing others are headed in the same direction as me. As Ram Dass said, "In the end, we're all just walking each other home."
So, keep being strong, my sister. We're here with you.
Susan
By the way, your English is great. Don't hesitate to keep sharing - we all want to know how you're doing.
I much agree with Francis (jersey-jazz) above. It seems to me that you need to change oncologists. Given all the treatments and diagnoses you've been through in what has been a 10 year journey, much should have been learned about how your body is reacting to breast cancer. However, there doesn't seem to be much logic behind your treatment changes. If you have both ER+ HER2+, and ER+HER2-, does the BRCA1 mutation apply to both? Which treatments were triggered by which cancer?
If you are near a university, please ask for an appointment with one of the teaching faculty who sees patients. Someone needs to study your treatment record, and come up with a reasoned plan for the future. You have been through far too much already with such serious side effects, I can't help but think your past oncologist was incompetent.
Thanks for your kindness suggestion. My BRCA 1 mutation was negative when they first sent my biopsy and blood for genetic testing. So my treatment plan was on ER+HER2- line. Two years after they sent my testing, an updated test result was sent to my oncologist saying I had BRCA1 mutation. It was understandable. There are thousands of points on BRCA1 gene and not all of the mutation to be considered cancer related. Mine probably not the common one. That’s why it took two years to be confirmed. When I had parp inhibitor and everywhere were stable even shrunk except I had severe pericardial effusion. They test the drainage and found out it was ER+HER2+.Yen-Ju
Thanks for sharing your story. You said that you have vocal chord paralysis. Is this related to your MBC? I ask because I also had vocal chord paralysis and it turned out that a mediastinal and hilar nodule was pressing on one of the areas affecting vocal chords. The situation resolved in about 3 months after I took Ibrance for a few cycles. I’m just sharing my story in case it can help you.
Thanks for sharing your story. My paralysis of vocal cord happened suddenly on the first day of Talazoparib. However, one day before that I had my first vaccine of COVID. Endoscopy showed my left vocal cord paralysis but nothing else. They did the implant injection to expand left vocal cord making right vocal cord easily to meet left while speaking. Unfortunately, those implants didn’t stay in the place they wanted. The procedure failed.
Dear s_yenju-------------My first reaction was to apologize for my response to your earlier post. After rereading both posts, I see that between the doctors that were treating you in China and those in the USA, perhaps something fell between the cracks. I still do not understand how the HER2 could have been missed for so long. I am the wrong one to be so outspoken because I come from a recent place of ignorance. I too had a healthy body until diagnosed in 2015. However, speaking out of this place, I concur with Hazelgreen. I still think that is would be wise to get a second opinion from a university or hospital specializing in cancer. Maybe your oncologist is not bringing her A game to you and you certainly need someone to do so!
Francis, Thanks for your kindness suggestion. I will seriously consider to get a second opinion. First of all, Taiwan is not a place where belongs to China and we have very different health care system. Our health care system is like UK or Canada taking care by government. All the cancer patients are taking care following by NCCN guideline in US. The only difference is that some of the new drugs are not covered by the insurance and the price will be extremely high. I know it might not be a very wise choice when I first chose to be treated in Taiwan but I don’t and have no chance to regret. The value of life lies not in the length of days, but in the use we make to them.
About my HER2+, I was only IHC 1+ but showing amplified on FISH when I just diagnosed on 2013. On 2017, the biopsy became HER2- when I was MBC. According to my pathologist friend’s words, tissue from one area of a breast cancer can test HER2-positive and tissue from a different area of the cancer can test HER2-negative. That’s why cancer is a beast and hard to deal with. There are still a lot of unknowns waiting for scientists to find out.
Dear Yen-JuI do apologize for my mis-call. One of my dear friends is fromTaiwan and has told me of the close ties with Japan, not of ties with China. Further, as noted, I know that you can have more than one kind of cancer in your body as reported in my case. I hope the scientists hurry with their research. Do you think that there will be a cure for cancer in your lifetime?
Dear Francis, I don’t think they use cure for MBC patients. However, we all eventually die for some reasons. I do hope my medical team have some interest on my case and I am also willing to support their research. Unfortunately, being a patient in MD Anderson, the so called number one cancer center in US, they see so many patients all over the world every day and I am only one of the difficult cases. They strongly encourage me to do the phase 1 clinical trail since I am not qualified for other trials and I will probably do trial again after this current chemo failed. I am not afraid to be an experimental mouse to support the research. I just think do I want to waste most of my rest of the time to stay in the hospital for a lot of testing?
God bless you, Yen-Ju! Are you on same treatment now, or are you being switched to a new protocol? You are a true fighter and I hope that your road ahead is clear and without too many side effects. You are in my prayers!
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