How much info is too much, too soon?

[urthmothr]

I may have shared my anger at my internist for telling me how bad my life would be with metastasis. I didn't think it was appropriate, and and news about my cancer should come from my oncologist. Would I have been less resentful if my oncologist had been less tactful? First, he told me he could give me "another 5 years," without any details about quality of life. What I "heard" was that after 5 years, I could hope for remission. Then he told me 12 weeks of chemo. I hoped that meant that infusions would end with the end of chemo. When that time came, and I had no sign of active lesions, he told me that I would be continuing targeted monoclonal antibody infusions for a year. The next time I brought up the matter of ending infusions (and the side effects), he told me I would be receiving them the rest of my life, unless there was a reason to change my medication. I don't know whether to be grateful that he was tactful and positive, or angry that he wasn't more honest with me!

[NPmary]

I'm sorry that was your experience. You have every right to be angry. If it were not for my own horror stories l would find yours hard to believe. You have every right to be angry and to express it. Sorry you had to experience and now process it. Hope you have fired him and hired a new internist.

Wishing you a gentle day and good outcomes. ❤

[urthmothr in reply to NPmary]

That internist was covering for my regular one. If they ever assign her to me again, I'll refuse the appointment and tell them why!

[NPmary in reply to urthmothr]

Glad to know that.

[Topood]

So sorry! Some doctors can be brilliant scientists but have terrible bedside manners...I wish they had a class on empathy in med school...as far as I know they are moving in that direction, but it’s too late for our crop of doctors....

[MaryCos]

Sending you a big virtual hug. I am a newbie, diagnosed de novo in July 2020. But, I will leave any healthcare provider who leads me to believe I won't be around for long. In fact, I have.

Just last week I challenged my (second) oncologist on her early statement to me (which was a second opinion consultation, that she put her answer to my question about prognosis/longevity in my medical record in quotations) that many women with HR+/HER2- can live well for "several" years. Point is, in my first few months of treatment (where the first oncologist started me on chemo despite finding out days before my scheduled first infusion that I am, in fact, stage IV... and then my second oncologist changed that to hormonal treatment)... I had it in my head, meaning what I was "hearing" from everyone in my (questionable) medical "team," was that I only had a few years ahead of me, at best. Well, based on what I have learned so far from many reputable sources and through this forum... I may be around for a long time. In fact, my oncologist agreed with me a week ago when I challenged her on the notion that we are looking at "several" years. She retracted, especially in light of the fact that I am otherwise of excellent health and I have been responding to treatment. (I got significant shrinkage in my breast and bone mets from 4 AC chemo treatments... and after 3 months of Ibrance/Letrozole and Zometa... my first/latest scans in early January show no evidence of progression and some lesions can no longer be seen.)

So... here is where I am coming from: My goal is to stay as healthy as I can for as long as I can... with a strong belief that science will figure this out in time for me and other women. While my health can certainly take a turn along the way (I am not in denial about this), I intend to make it into my elder years and die an old lady. Dammit!

I don't know anything about your particular health circumstances, and, as a newbie, I can't offer any information/insight/advice at this point. But, I have come to learn that online stats are OLD/OBSOLETE... and, in general, no medical professional can predict where we will be in 5 years or more. Or where the science will be at that time. Needless to say, though, I am extremely hopeful that answers are coming.

I made a comment to my oncologist (a week ago yesterday) about my hopes regarding science coming up with a cure. She was quick to remind me that there is no cure. I clarified once again that I am well aware of this. TODAY. For where the science is TODAY.

With all this, I hope there will come a time when you do NOT need to be in cancer treatment. In the meantime, I would consider leaving any healthcare practitioner that isn't competent, honest, and compassionate/sensitive. And, I would worry about any doctor that relies on old statistics, etc. I don't want my doctor to give me false hope, but I will not stay with a doctor that robs me of hope I SHOULD have.

Cos

XO

[viennagirl in reply to MaryCos]

I sure agree with you. Telling you that there is no cure is just plain stupid. There is a cure and some of us are on our way to proving it. Hugs Marlene

[MaryCos in reply to viennagirl]

Well, with MBC, there isn't a CURE today. But I believe the CURE is out there waiting... to be found. Thankfully, Joe Biden is making cancer research ....for a CURE... a priority. I fully expect that the cancer treatment landscape will be very different in 4 to 5 years, let alone 10. And, we need research done by the government/universities because Big Pharma has no interest in CURING us; only making cancer a manageable chronic disease with life-long (costly) medication customers.

Given where I am with my new diagnosis and good response so far to treatment, I have no reason NOT to be hopeful. This is why, in particular, it pisses me off that all of the health professionals I have dealt with so far (specific to my insurance company which is also my healthcare provider)... caused me to think my time is limited. Secondarily, it pisses me off that I have to educate THEM about what the science/research says. Hell, my nurse navigator didn't even know what "de novo" means, let alone that research suggests my lifespan will be longer than someone who progressed to stage IV after an earlier, lower-stage cancer. And this is because de novo patients are "naïve" to treatment, which means we are likely to be further away from resistance to a drug since we have never been exposed to them before.

Again, as I said... I plan on being around a while. And I am now VERY careful about where I get my information and also what I will "accept" as true/accurate. Basically, I will check out anything that is being said to me from my healthcare provider, and push back if I know something doesn't add up. It's exhausting, though!

❤️

[Gypsypublisher in reply to MaryCos]

Thank you MaryCos! Right in and amen.

[rubyc1234 in reply to MaryCos]

Very well said! My oncologist gives me no timelines. She says she has no idea how long I have and that is the truth. I feel good and believe I have many more years.

[Hidden]

Hi,

I can understand why you were upset. I have certain expectations from my medical team and right at the top is honesty. We need to be able to trust our oncologist, oncology nurses, GP and anyone else who is taking care of our health. You have every right to refuse to be seen by the same internist again in future. Important information about our health should come from our oncologists and they should speak to us with care and sensitivity. It's easy for things to get muddled when there are others involved.

Take care,

Sophie 💐

[viennagirl]

Wow, you certainly have been given the run around. I think you should make some notes when you are dealing with this guy and confront him when his information doesn't match with what he has told you.

I want to believe in healing for all types of cancer. If I ever get a NED I think I will go off the meds for at least 6 months to see how well my body is doing on its own. If we take really good care of ourselves, why can our bodies not heal themselves. It is all very scary but I try very hard to stay optimistic. There are bullies in every profession. We all need to remember that. No one even has the right to tell you how long you will live. So many women live way beyond those estimates. Given a person a time limit can cause very negative vibrations in the body. If we believe that we are on our way to healing we will likely heal. Hugs to youurthmothr. I love your name. It inspires hope in me. Marlene

[urthmothr in reply to viennagirl]

I think my oncologist's intention was to give me hope, so I would not give up. That internist seemed intent on destroying hope! As for a cure for MBC, apparently it changes as it spreads through the body, making it harder to find a cure. Each site is treated as it is identified, and infusions hopefully catch everything that was missed. I had to reach the point where I could say, "I will deal with this, no matter how long it takes!" At 75, I'm shooting for another 10 years, to match the average life span of women in my family.

[PJBinMI]

I'm always reluctant to comment on others experience with a particular doctor since our communication can be quite nuanced. My long time onc, who sadly retired about three years ago, was highly respected in the medical community, both locally and by BC oncs at the big CCC where she had trained and where I went for second opinions. Most of her patients loved her, but some folks just could not stand her directness, not that she was rude but if we asked a question, she answered directly. That was what I had asked for in an onc! She never gave me a number of years but had let me know before initial staging that metastatic bc means no cure and likely dying from bc. One thing I really liked about her was that she was never in a rush about much of anything. She spent lots of time with me when I needed it, which also meant that I probably spent more time in the waiting room than some would tolerate, but I always knew she would give me all the time I need when I need it and that when she was running late it meant she was spending time with another cancer patient who needed time. When I had progression, we didn't jump to change treatment and that has worked well f or me. And after a few wild goose chases based on radiologists reports, she examined all my scans her self and sometimes did not see a thing where the report said there was something concerning. (I think some radiologists are so afraid of missing something that they find things that are not there! I've fired several doctors myself, mostly based on gut feelings about them. lol I was referred to a doctor, I don't really know his speciality, for an injection of cortisone into my spine. My husband went with me to my first appt with him. When we walked into the waiting room, it seemed like everybody there was on heavy duty pain meds, including the receptionist--flat affects, not energy, etc. He just wanted to prescribe pain meds for me and we got outta there as soon as we could and told the referring doctor about our negative impressions...... I still haven't gotten the cortison injection but am doing better in the back pain dept.