Best Of
Mets to Pleura
in October 2018 when I was 34, I was diagnosed with stage I/II IDC ER/PR+ HER2- low oncotype and ki67 and so went through lumpectomy, radiation, tamoxifen for five years. It was a large tumor near my chest wall, but due to the pathology report + oncotype oncologist said my outcome would be very similar with / without chemo so we opted for no chemo.
In Nov/Dec 2024 I stopped tamoxifen and since it was my first year off my oncologist decided that I should have my annual mammogram in October but then have an MRI in April so I have some form of a scan in 6 months rather than after a year. Thankful for this MRI since it picked up fluid around my lung and so went for PET scan. Again PET scan showed pleura effusion on my right lung and slightly collapsed with mild SUV uptake. Till that point I had zero symptoms other than feeling unusually out of shape when working out / hiking. I got transferred to a pulmonologist to get a VATS pleura removal + biopsy (surgery just over a week ago) and the results are now out - pleura has similar characteristics as my original tumor putting me officially at stage IV. Can I also add the vats is bloody painful - didn’t expect that I feel like lumpectomy was easier!
I’m grateful for my oncologist who wanted me to keep checking although he told on paper it doesn’t make sense for me to have Mets given my original non-aggressive tumor. But the appearance of fluid bothers him and he wanted to make sure so he connected me with his pulmonologist friend.
But it still sucks. It’s also scary. I’m the minority that got Mets.. yes with Mets prognosis isn’t always bad, but given my luck with this recurrence I can’t help not think that I might not beat the odds. I cry just looking at my kids hoping that I can at least see them into early adulthood. I’m hoping after my appt tomorrow with the oncologist to determine the way forward I’ll feel better.
Not sure what the point of my post is. Maybe a bit of just putting it all out there. Anyway, if you know of any positive stories of cases like mine pls share.
raysal
Re: My Husband, My Life, My Love, My Family, My Cancer
Well, had a decent sleep last night and just getting a start to my day.
Robot vac doing its thing in the living room, cats have gone AWOL. Got some boxes to break down as well, there is a lot to take out on Thursday since I skipped last week.
Finishing up spinning laundry from yesterday, not too much today so if I wash, probably use a smaller one. I will see what I wish to do.
I have come to a food crisis in that found some food I do not like to eat like the kale and not sure about the spinach, not a big salad person. Need to eat more beans and rice type stuff. Eggs can be done in conjunction with a meat pie. Also feeling like having a burger and bun are a bit overwhelming too. I am probably going to throw a sprayed bowl with two eggs, grind up left over burger patty from Burger king and throw that in and have the bun with garlic as that was quite good. I think I will use more lentil along with the chipotle beans, beef up the amount.
Got a prescription delivery coming, just my tegretol. I am always amazed the pharmacy recognizes me and remembers the two prescriptions I get.
Once the deliveries happen, will get dressed and put on the heating gear to take a walk around the block. Supposed to be fairly warm but will put the evaporative head band cooler under my wig, got the neck fan and another evaporative towel going around my wrist. Bring water of course and the wide brim hat but would like to build up some heat tolerance as some of our temps will feel into the mid 90s. Oh well, almost officially summer and we are humid.Better hot than snowy. When it comes to appointments at the hospital, Paratransit all the way.
I do hope everyone has a good day, I am in pockets for all who need me. In my own pocket to actually do a walk around the block.
Re: ER-, PR-, Her2+ Roll call
@beekaycro24 sending u healing vibes and hugs. I'm hoping that u get to go home soon to rest .
@grammie2 very happy for u and your tears of joy! The port being smashed during mammo and coming out fine? Whoa!
@chocomousse please keep us posted about what treatment is offered given taxol allergy.
snm
Re: Herceptin only ... no chemo ... Medicare won't cover it!
Thank you. We’ve already started that process with Genentech. I’m discussing this as an age discrimination issue and I’m using one of your research papers as justification for a herceptin only treatment protocol.
ptsintx
Re: HER2 Positive-anyone 10 years out?
@hopefaith1 Hope that you are doing okay. I do use google for explanations for a ton of terms and possible solutions. I am not one to believe in snake-oil treatments and take all with a grain of salt.
I am also on a lot of online support groups and do learn a lot there.
I am at 23+ years of MBC de novo.
denny123
Re: Ibrance (Palbociclib)
@sully01 , Please don't worry about dropping to a lower dose of ibrance. You'll be OK. I started with 125mg, and stayed on it for 1 ½ years before moving on to 100mg for 3 years. I've just dropped to 75mg last month. It's been rough when my Neutrophils dropped but I try yo keep on top of things in order to avoid potential crises by closely monitoring any signs of mouth/throat/chest or stomach infections because that's where my signals of an impending infection start. I wish you and everyone else in this chat, a smooth ibrance experience
I have to add that being in this group has been my lifesaver because it's where I heard of alternative dosing schedules like 5days on/2days off; and 2weeks off/2 weeks on. That helped me last longer on the 100mg because I told my Oncologist I was reluctant to change to another CDK4/6 if Ibrance was working. My special heartfelt thanks to all the the women here whom I've asked countless questions, whose experience has guided me and from whom I've picked so much information.
Love, hugs and blessings to all because you are the best 🙏🏻❤️🫂
Re: Can we have a forum for "older" people with bc?
Carole - glad to hear you are safely in MN. How is the air quality? Are you being impacted by smoke from the wildfires? We are having lots of gray, hazy days in northern Illinois. Fingers crossed your refrigerator continues to run.
Taco - good to have you check in. Love the idea of the dog pictures. They sound really cute.
Spent yesterday in Wisconsin celebrating my grand nephew’s high school graduation. It was great to see my family and have a whole day with my son and DH. My son is 33 and is closer in age to my brother’s grandchildren as DB’s kids are in their 50’s. My DS is pretty easygoing and gets along with everyone.
Had my quarterly visit with the GYN Onc today and everything is fine. The NP had noted a prominent supraclavicle lymph node in my neck during Friday’s visit and suggested I ask the oncologist about it. He can’t feel it and neither can I but felt a CT scan was appropriate given my medical history. I have an appointment for that in two weeks but I’m not concerned. However I can’ t get a bone density scan without a doctor’s order so I messaged the NP’s office to request an order. We’ll see if I get a response.
I also saw the RN’s notes from my MWV. This is the RN I saw for 2 minutes while waiting for the NP. He noted that no height and weight was on file but BMI was overweight. I messaged the office and told them the MA took all the vitals when I arrived and the info is somewhere in their office. The RN also noted that I was not interested in discussing the advanced directive. So I messaged the office and told them he did NOT ask. I have an AD as I have advised the doctor for each of the past two years. Clearly a lack of communication within their office.
When I made the CT appointment, the woman told me to arrive 15 minutes and then later verbally corrected it to 1 hour early as I have to drink the contrast which I believe is accurate but is not reflected in the appointment time on the patient portal. I’ll call the imaging center directly to make sure I understand the correct time to arrive.
All of you have been wonderful with ‘listening’ to my medical complaints. But I am finding nearly every medical encounter results in some type of discrepancy or error. I’m frustrated and scared.
Have a wonderful week.
harley07
Re: Can we have a forum for "older" people with bc?
Hazy today due to smoke from Canadian fires drifting to area. Sun trying to get through so a mixed day with temp at 70 degrees. I was going to direct DH in planting some perennials but was too tired.
I am sleepy because my knee kept me awake, so needed to use ice pack and read for about 45 minutes before I drifted off again. I did take Norco at bedtime because leg was hurting, but woke again at 6 and had to take a second one. So I did not take one before PT and was able to make it through.
There is another woman at PT who also had TKR and we were talking today. She had hers replaced in January and she was amazed at my progress since I am not quite 2 months out. She is struggling with her right knee and for me, its the left, so we are like bookends. When she first started coming to PT she was using a walker and has advanced to a 4 prong cane now. I use my cane if I have to walk long distances or if I am tired and in pain.
So plants will have to wait until tomorrow. I did dig holes yesterday and think that is why I am experiencing pain. I want to resume some normal activities but the knee is not cooperative. Frustrating since I don't want to always have to sit with leg elevated. DH is not a housekeeper so my house is not in what I consider as clean as I like it. I can't vacuum yet but I can dust so I just need to concentrate on that at present. DSIL likes to mop floors so he will do that for me.
Taco, so glad you have a physician who knows you and lets you discuss where you are at mentally and physically. Got a laugh about his "kill Ken" comment. Getting a good physician these days is a real challenge and when you have one, you want them to grow old with you or to never retire.
I saw a physician for pain management 5 times and she was never prepared for our appointments, plus she was always very late. At the last one, she acted like it was the first time we had ever met, insisted I needed a med I would never take (told her that) and insisted on giving me a prescription for it and for another appointment. I walked out of there, made an appointment, and by the time I drove home, decided she was dangerous and I was never going back to see her. I called and canceled the appointment. She was well-respected and the chief of the department, but as far as I was concerned clueless about me and my concerns. Never prepared for any appointments.
Hope everyone had a great day.
betrayal
Re: Stage III Cancer Survivors ...Five + Years and Out.
Just checking in - still kicking, still working, still complaining at age 75 and coming on to 30 years NED.
Re: Multiple Organ Mets and on Kisqali/Ribociclib (3+yrs)
Hi there,
My wife is 22 months into stage IV mbc spread to lung and bones with a PET report yesterday showing avidity in the liver. She's a little over two months into Kisqali. How long did it take for the drug make an impact? I'm just looking for any reason to be optimistic for her, myself, and our kids.
jbradb52