Controlling my own journey

@briahere Keep in touch if you want and tell us how it goes--important!

I am new on this journey of declining additional care although I have not written off clinical trials. One thing I plan to do, which I would have done at an earlier stage even but just learned about from a nurse, is find a PCP that I feel comfortable with, and who can connect me to hospice or palliative care resources easily. Not sure how hard this will be. I've heard stories of oncologists refusing to refer patients who wanted to start hospice (or simply too busy to deal with it), whereas the PCP can be a more reliable, neutral party. My greatest fear is uncontrollable pain! I also have learned that there is a point where patients in hospice actually outlive Stage 4 patients undergoing aggressive care - this was a point highlighted in a recent class that I took on end of life planning. Of course, there are those Stage 4 patients who live for years. But when your body is weakened and your immune system is shot, stopping the aggressive treatments makes sense. Finally, I have started seeing an integrative cancer provider, who may not cure me but has many options to maximize my QOL while I'm here.

I too am stage 4 metastatic breast cancer and am 79 years old. I first was put on Truqap but had a severe allergic skin reaction and stopped after 7 days of taking this oral treatment. It took two months before I was able to start another treatment. I was put on weekly taxol and lasted 3 weeks before I said no more. I had a horrible quality of life and would rather give up than take another round of Taxol. Took two weeks off and then started Enhertu infusions. I did start at the lowest protocol because my body was so weakened by the first two treatment plans. They also biopsied my liver cancer and found out my cancer had changed from estrogen and progesterone positive to estrogen and progesterone negative….the first two treatments were for estrogen and progesterone positive cancer and since mine was now estrogen and progesterone negative, they did nothing for me and my cancer spread from just being in my spine to other bones and my liver. I am tolerating Enhertu much better with only fatigue and weakness. I will have my PET scan June 18th which is after 3 Enhertu infusions and will find out if it is helping against my cancer. The point I am making is some treatments lay you so low, you want to give up but if you can try again, there may be one your body will tolerate and give you more time. Some people luck out and can tolerate the first treatment but others have to endure until the right one comes along. This has been what I have experienced. I wish the best for you. The decision to stop treatment is something only you should make because only you know how your body feels and what quality of life you are experiencing. Hugs to you.

Ask your oncologist about Hernexeos, now first line over Enhertu

Hi Bria, I have stage 4 Breast cancer. I have decided quality of life is more important than chemo. I am 75. I have had a good life. My family is grown. I would rather not have them see me go through the awful chemo treatments. So…. I have been working out at the gym, trying to up my immune system, cleaning up my gut, and finding peace in every day. My breast cancer treatment area does have palliative care and I plan on seeing someone there in 2 weeks but I also went to pcp and she said she would refer me too. My pcp backs my decision. I also went to an oncologist Natrupath who is helping me clean up my gut. Let’s keep in touch through our journey. I also have strong faith which helps me get through the days I want to wallow but He says be strong and courageous and positive!

@briahere--I was just wondering how you are doing, as some days have passed. I hope you are getting the care and support you need.

@jmab
Totally agree with you. The reason I found this forum helpful is that every comment resonates with me. I appreciate any support but the most meaningful ones are from you, the cancer survivors.
I recently had a ct scan for side pain. The scan show a small lesion on my liver. Too small for the radiologist to determine what it is. Appreciate any comments from anyone who has been in this situation. I’m still waiting to hear from my onco. But I’m worried.

@myoga well, the waiting is nerve-wracking, we all know that! I'm new & just "passed" my first 6-month check up, but I was still nervous. Others here can give you more insight on their own experiences with xray spots, but the consensus seems to be that most of the time they turn out to be benign. Keep us updated & meanwhile, sending happy & positive vibes to you! ❤️

@jmab
Thank you! I couldn’t sleep tonight and your words give me the comfort. Will update after talking to my onco. Hopefully tomorrow. Hugs.

Dear @myoga :

I am so sorry for your recent unexpected CT scan! My prayers went out for you upon reading this post...

Even though I am not any medical expert, I am wondering whether you may ask your oncologist - when you see him/her today - for an MRI to further investigate the true characteristics of that lesion on your liver. In my understanding MRI is generally the superior tool. While CT scans are excellent for quick, whole-body screening, MRI offers more accuracy at detecting and identifying the exact nature of lesions smaller than 1 centimeter. It may turn out to be a benign cyst, or hemangioma.

My thoughts and prayers are with you, Myoga, praying for peace of mind, hope and wisdom from above!