Best Of
Re: Bone Mets Thread
Thank you for the explanation regarding genetic testing. 🙏🏻🙏🏻
According to my doctor, genetic testing was planned for BRCA 1 & 2, ESR1, and PIK3, but only BRCA 1 & 2 were actually completed.
When I asked about a liquid biopsy, I was told it had been done, yet I only received the results of the initial tests. In addition, biopsy samples taken from the L4 vertebra were sent for analysis, but after a month I was informed that the tissue was insufficient for testing.
Overall, the process has felt unclear and fragmented.
Regarding my doctor, he is a highly qualified, board-certified oncologist, and I do not question his knowledge or experience. He practices at a well-known hospital with a strong reputation.
My concern is specifically about how my treatment was changed. The recommendation to move to Enhertu appeared to be based mainly on rising tumor markers and a very small area of progression in the tibia, without clear confirmation of the cancer type associated with that progression or definitive evidence that Kisqali had fully failed.
The current treatment with Afinitor and Exemestane was only suggested after I strongly requested an alternative. I am still not comfortable with the way this treatment decision was made and remain unconvinced that Kisqali had completely stopped working.
Thank you so much for taking the time to explain everything and share your insights. I truly appreciate your support and guidance.
🤗
I just wanted to clarify that my medication was changed because of progression in the tibia and increased tumor markers, not due to my torn labrum.
Re: My Husband, My Life, My Love, My Family, My Cancer
@threetree Happy Birthday. I hope this day is full of blessings and joy.
Re: My Husband, My Life, My Love, My Family, My Cancer
Happy birthday @threetree , sending good wishes and support on the progression.
I did sleep, finally went to bed instead of falling asleep on couch. Slept fairly well. Still have a nagging cough though not as often and it did not wake me up. No calls to wake me up either. Still working on an earlier bedtime to grab all sleep needed.
No chores though will be pulling out my suitcase used in last hospital stay to hold personal stuff, organizing movies to put on either a tablet or just a spare phone. May also ask for outside food once allowed to eat, I will have to see. Also wondering on how long need to be on steroids, check on the ability to take rabeprazole and digestive enzymes once I get home. These are the things I wonder about. I also want to do the laps around the halls as soon as allowed to walk, only difference is cane and sneakers on my feet.
DB, SIL and witnesses need to get together before surgery for POA set up and will. The doctor indicated that since no one is officially set up, my younger brother could get a call and that would be bad as we are estranged after a bad relationship. I also need to set up older DB to handle finances should the need arise.
No real emotions yet towards surgery, no real fear either which is much different than the last time I had surgery. I posted all the info on Facebook as I do if there are updates. Got good support here, in real life and from friends on Facebook as well.
In the meantime, there are more appointments to go through and scans again, pre admit clinic and different stuff, once those are done, get about a week between both appointments and a week before the actual surgery. Can clean house before.My SIL wants to clean and get rid of stuff but want to go through what we are looking at and weather I use them. I keep old phones and laptops and do other stuff with them as I am a bit of a techie, enjoy using things for different purposes. Got 4 laptops, main one I use and others that I like to experiment on. I think all the organization stuff can be done post surgery. I may also have to do without wigs until staples come out if they use those again. Plan to trim remaining bio hair too
In meantime, laundry, keeping sinks clear and a clean bathroom are the most important. Good meals would be good as well, love my air fryer, have not made use of the instant pot a lot yet but that will come with time. Figure Time needs to be broken down. Take care of will and POA before surgery, once home , take care of tidying. Want SIL to focus on herself and family as well, they are busy.
Not sure about meals today, eaten up meat pies. I did do up some crisped black beans done in garlic salt and sour cream and onion, put those in a bowl and added warmed queso and some doritos and tostios crumbled. They were quite delicious. The microwaved eggs and meat pie done together was quite good as well. I have also started taking a spoon of peanut butter as dessert after dinner. Satisfies the sweet tooth vs chocolate. I also plan to ask for meals from DB to be brought in when visiting. I will have to see about all that.
Anyway, I do hope all have a good day, in pockets for all of us and anyone with family needing as well. My cat accidentally just set off the lifeline alert, had to advise the people, Kind of funny.
Re: Can we have a forum for "older" people with bc?
Betrayal, a perfect quote for me, today. They are clearing the property neck to me. Watching the 100 year old trees coming down is breaking my heart. That, combined with loss of privacy, the woods I love, and all the wonderful times spent on my back lanai, is causing me a meltdown. The doe that comes in my back yard was here yesterday. I think she was telling me good-bye. I need to run back to North Carolina or some peace and quiet. The equipment and the trees falling is vibrating the house.
petite1
Re: My Husband, My Life, My Love, My Family, My Cancer
@mara51506 - I agree with the others, that your resilience and ability to handle all of what you're going through right now is amazing. I remain in your pocket and you have my full support and best wishes for nothing but a positive outcome here.
Re: Bone Mets Thread
@tougholdcrow @shanagirl @threetree
I completely agree with you, and your words will reassure many people like me who live with bone pain all the time.
I will share my personal observations.
I always experience bone pain in different areas; each time it lasts for a few days or weeks, to the point where I start to imagine it is something serious.
However, the tests do not show anything.
When there was actual progression in the tibia, which later showed on imaging to be cancer, the pain was more like something constant but mild. There was also a sensation of heat at the tumor site, similar to an electric current starting from the upper leg and traveling down to the foot—not an actual current, but a feeling of heat.
At that time, I informed my doctor, but before the disease spread to the bones, he did not give it much importance and only ordered PET scans up to mid-thigh, despite my repeated complaints.
It later turned out that the tumor had returned to the tibia, which had never been included in any of the scans.
Now I am experiencing pain in the lower shoulder and the corresponding area in the front of the chest at the mastectomy surgery site.
However, it does not persist all the time; it only occurs when I get up from sitting or sleeping, and it limits my ability to move my arm or do any physical effort.
Thank you for all the information in your post about the liquid biopsy
I will come back to you to explain what happened with me 🧡
Re: My Husband, My Life, My Love, My Family, My Cancer
@mara51506 Wow you always totally amaze and inspire me with your focused determination in going about your day which includes your nutritional self care as well as appointments, along with keeping up your household chores, and arranging para -transit etc etc. I still like to think of you as the engerzier bunny, with a strong survivor skill. I’m always in awe of you girl🥰🩵 get some rest. and I’m in yours & SIL’s & DB’s pockets
Re: My Husband, My Life, My Love, My Family, My Cancer
@goldensrbest Yes, praise god for the good news for your DH. That is an answer to prayer.
@mara51506 Covering you in prayers this morning.
Re: Over 60, Birads 3 and a Story you Can’t Believe
I wanted to give an update, mostly in case someone else in my shoes sees this post later. I had my ultrasounds done at the new facility. They look very reassuring, but I am getting bilateral biopsies in January. This is the first time I feel calm since this whole mess started, because I will get a definitive answer. As women get older, new focal asymmetries have a higher risk of cancer than they do in younger women. I wish I’d never Googled that, but it’s definitely more than the 2% risk that is the standard for Birads 3. When you add in my family history, it’s just scary. I’m very hopeful this will be benign, but for me it is better to know now than wait.
There is one other thing that I can’t stress enough. If you aren’t happy with your care, get a second opinion. Every thing about this second facility has been better than the first. I was able to see the radiologist in person and he spent time answering my questions. There was one thing where he didn’t have an answer and he called me before I was even out of the parking lot with the information. No matter what happens, I feel secure that the care I get will be appropriate. There is no way that I could have said that if I’d stayed with the first radiology group.
Re: My Husband, My Life, My Love, My Family, My Cancer
@intolight The decision to stop treatment or to continue on is definitely a hard decision, I am in your pocket as you decide what to do and hope that the choice is for you as much as others who love you. Holding you in my thoughts.