u/Mandolyn221

Totally random question as I am just curious. I recently got my nose pierced and I will be due to have my first pet scan since starting treatment in the next couple of months. Anyone out there with piercings that can tell me if they need to take them out for a pet scan? I swear I’ve kept my earrings in (also small studs) for other scans and now I am second guessing myself. I just want to make sure I have a plan for a glass place holder if I need one. I don’t want it to close up while I’m in the scan.

To zometa or not to zometa. That is my current dilemma. I am terrified of ONJ and have heard the first infusion sucks. I’m to the point in treatment where I will need to decide if I want to try it soon. So, for those that have done it can you tell me how it really is? Are you glad you did it?

Diagnosed with +- - recurrence with extensive bone mets in late April. I started arimidex in May. I had my ovaries removed in mid June. On May 26th my CA 27.29 was 419.9 I just got the results from my first blood draw since starting treatment and it has dropped down to 159.2. I know that number is still high but seeing it drop gave me hope.

I am also 3 days into kisqali so I hope adding that will allow an even greater response.

Well, I did it. Through tears and prayers I took my first dose of kisqali. I’m terrified of any potential side effects but for now I feel good.

For those on it that have had issues when did your side effects start?

I was diagnosed with extensive bone meta er+pr-her2- back in May. Since then I had my ovaries removed and started arimidex. Overall I have tolerated both fairly well with minimal side effects. Basically some headaches and hot flashes. I am going to be starting kisqali soon and I am really anxious about it. I feel like this makes it more real and has the potential to make me feel sick. I hate this to be honest. How awful is this going to be?

Maybe it’s the hormones (or lack thereof) since I had my ovaries removed 3 days ago. Or maybe it’s just all hitting me that this is actually happening to me but I am feeling pretty down today.

I made the mistake of posting looking for hope on a Facebook group and some absolute jerk made the comment that I should get my will written and tell my husband what kind of funeral I want. Why anyone would think it would be helpful to say that to someone or beyond me.

It could also be that it’s Father’s Day. My husband and I lost 5 pregnancies and were never able to have kids. Life just truly seems to keep kicking me in the teeth and I am tired. I truly need a fricking break. Anyway, thanks for letting me vent and cry it out a bit.

I’m about a month into this nightmare and while the bad days are getting better I am still absolutely terrified. I am 40, and I feel like no matter what I do I’m going to die “young.” I have widespread bone mets, like this garbage is everywhere. I am er+ pr- her2-. Seeing things like a 75% chance I don’t even make it 5 years just sucks. Even if I get 10 years I will still only be 50. I know no one knows when any of us will actually meet the end but knowing that my odds of it happening sooner than later are far greater than I would like has been super hard to wrap my mind around and accept.

I was never able to have children, but I have an amazing husband that I cannot bear to think about leaving behind. I also have a 4 year old nephew who I need to see grow up. I truly want to live another 40 years but I feel like that’s impossible. I guess I am just looking for hope and to vent a bit. This is so unfair.

I finally have the results of my bone biopsy and I am confused. My original cancer in 2023 was 90% er positive 90% progesterone positive and her2 negative. This biopsy showed 100% estrogen positive, but it is now progesterone negative. I remain her2 negative (1+). I am shocked that I went from strongly progesterone positive to negative, and sort of scared that this means I am trending towards triple neg. Anyone else had this happen?

I had my biopsy on Friday. We already know the bone mets are estrogen positive thanks to the cerianna pet scan. My original stage 2 cancer was er/pr+ her2-. I find myself freaking out that somehow this cancer is different and is more aggressive. Has anyone ever had their receptor status change from original diagnosis to stage 4?

I have my bone biopsy in 2 days to confirm what we already know. The cerianna pet scan showed my widespread bone mets are at least strongly estrogen positive but unfortunately for me they still want a biopsy to check other receptor status. I was ++- stage 2 back in 2023. I am hoping this comes back as the same.

Anyway, I am freaking the hell out about this bone biopsy. I have super bad medical ptsd and hate being in pain or uncomfortable. My doctor knows this and ordered it with sedation but I am still not sure I can go through with it. For those of you that had one, how was it? If you had sedation do you remember it?

EDIT- I had the biopsy yesterday and it was fine. I was extremely nervous (literally crying in pre op) but the staff was all so kind to me and they took great care of me. I don’t remember much of the actual biopsy thanks to the sedation. I remember going into the ct room, laying face down on the table and talking to the nurse and doctor. As soon as I talked to the doctor he gave the nurse permission to give me medication and that’s where my memory ends. I don’t really remember much after that until I was in post op recovery. They used my iliac for the biopsy and my back/butt/hip area is a bit sore today but not too bad.

I just had my teaching appointment for kisqali and now I am questioning if I even want to start it to be honest. Hearing all of the possible side effects has me in a really bad place mentally. I don’t want to be sick, bald and dying and starting this medication seems like that’s where I am headed. For those that have taken it what has your experience been? I am picturing myself bald and in diapers. This all just sucks so dang much. I’m 40. I am young. I feel like this is a mistake, this can’t be my life.

The Lupron has me feeling AWFUL. I was one of the unlucky ones that had a lupron flare and I’ve been bed bound in extreme pain for days now. So, I am determined to never have it again and have decided to get my ovaries removed. For those that have done this surgery how was recovery? Any tips you learned during your process?

I get my first lupron shot Friday and I am super worried about side effects and honestly… I’m worried about my sex life. I’m only 40 and I am happily married. I would love to continue to enjoy sex with him. I know some people will say they were happy to not have sex again but I am looking for tips and advice from those that have continued to have a good sex life after treatment started. What worked for you?

I finally saw my oncologist today. She showed me my scans and said it’s indeed diffuse widespread bone
mets. I looked at the scan and sure enough it is in small spots pretty much everywhere. So, that sucks. But I suppose the good news is there is no sign of anything in any soft tissues, no organ involvement and nothing in lymphs. I am 40, premenopausal and my original diagnosis in 2023 was stage 2 er/pr+ her2-. She has proposed lupron, arimidex, and kisqali as the first line of treatment. She also mentioned we would add zometa after a bit to strengthen the bones as they hopefully heal from the mets.

I am terrified to start and worried about side effects. But on the other hand I don’t want this junk growing anymore so I’m ready to get started and hopefully be in the path to NEAD. Has anyone else done this as their first line? If so, how did you do?

So let me give some context. I didn’t really like my medical oncologist the first time around but I kept her because I was only going every 6 months and didn’t really need much in terms of care. Well now that I am facing stage 4 I am starting to wonder if I should get a second and possibly even third opinion and shop around a bit. I am within reasonable distance of 3 different major cancer centers. 2 of which are designated comprehensive cancer centers (my current center being the one that isn’t). She just doesn’t have very good bedside manner. I had a pet scan on 5/4 and she has yet to call me and talk to me about it. The only interactions I have had have been with her nurse via my chart and even after I asked for her to call to answer some questions I haven’t heard from her. Is that abnormal? Like I get that she wants to order more testing but I have so many questions and feel like she just doesn’t want to talk to me. The unknown is the worst part and the fact that she can’t even take 5 minutes to talk to me is really rubbing me the wrong way.

Anyway, if you were in this situation would you consider switching? Am I being unreasonable by expecting a bit more concern from my doctor here?

I’m still on the diagnostic phase, but the pet basically confirmed widespread bony disease. My original cancer was in 2023 and was ++- stage 2. I did a DMX and radiation. No chemo the first time around. I find myself really struggling with decision fatigue already. All of the what ifs and what am I willing to do or not do. I am not a huge medication taker and currently take zero prescription meds. I am really struggling with the idea of having to be on pharmaceuticals for life. I know they have saved people but the idea of side effects are hard for me to accept. I am only 40, and I want years of life but if those years are spent suffering and feeling sick with massive side effects is that what I really want? I don’t know.

How did you all make these seemingly impossible decisions?

I’ve posted a couple of times and I appreciate all of the advice so far. I am currently on vacation visiting family and I find myself feeling down today. I am still in the diagnostic phase of this. I had my first pet scan that showed “severe diffuse bony metastasis” at the beginning of the month. I have a cerianna pet scan next week, and potentially a bone biopsy after that.

The mental part has been really hard for me because I feel totally fine and normal physically (which I am very thankful for and I know I am blessed to have that). It’s like my mind cannot wrap itself around this diagnosis. I feel like I have this countdown until I have this other testing and am put on medicine for the rest of my life. Before this I was fairly holistic and didn’t take any medication really. Again, I know the meds will prolong my life but I am so afraid of the side effects. I have this huge fear that right now in these moments is the last time I’ll feel “normal.” Sometimes I find myself wishing I never had the original scan and could just continue to be in ignorant bliss and think that everything is fine.

Anyway if you’re still reading thanks for listening. I guess I am just looking for hope from others that it’s not all downhill from here.

I need to have a cerianna pet scan done to see if the spots that they found during my regular pet scan are estrogen receptor positive. The hospital only does these tests on Wednesdays. I have a trip planned to see my nephew and celebrate his birthday next week, a trip which I was looking forward to. But, if I go this will delay the test being done by a week. I asked my doctor if waiting a week would change my prognosis and she said she cannot really say and it was up to me if I wanted to still go or not. I feel like I have an impossible decision to make here and I am looking for advice. Do I cancel my trip and do the test next week or take the trip and delay the test a week?

I am still waiting for a call from the doctor but it doesn’t sound good. The pet scan shows “Severe diffuse bony metastatic disease” basically my understanding is this shits pretty widespread in my bones. What we do about that and what that means for prognosis I am not sure. Guess I’m just looking for hope and wondering what comes next.