u/Mandolyn221

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.

I have a pet scan on Monday after a CT scan found some sclerotic bone lesions on my spine, pelvis and femurs. This would be a recurrence after having stage 2 hr+ her2- in 2023. My question is if this pet comes back and shows what we assume it will what comes next? The idea of a bone biopsy is enough to send me into a panic. Not to mention potential chemo, pills, all of that. I guess I am just wondering what the normal course of action is so I can feel at least somewhat prepared.

I am 40 and feel like I have been given a death sentence. I was diagnosed with stage 2 hr+ her2- idc in August of 2023. I had a double mastectomy and radiation that ended in January of 2024. Since then I have been doing my best to live a normal life. Cut to today. I had a hysterectomy 12 weeks ago and woke up with really bad abdominal pain. Fearing an ovarian torsion I went to the ER where they did a CT scan. That scan has turned my world upside down. They did find some ovarian cysts (I kept my ovaries) but they also found multiple sclerotic spots on my bones. The findings are sclerosis involving multiple thoracolumbar vertebra, bony pelvis and both femurs. I haven’t been able to sleep or eat. My mind is racing. I guess I am looking for any hope or anyone out there that had this and is doing ok.