Source
r/CancerFamilySupport•
melodic_motion

Angry the oncologist didn’t properly prepare us for what to expect

We learned my mom has stage IVb non-small cell metastatic lung cancer. The oncologist never in any appointment explained the stage, her prognosis or what the goal of treatment is. He just said “let’s get started with chemo.” We just found those details in the mountain of papers today. So my sister who lives with her and has been taking care of her has been so frustrated about our mom’s apparent lack of will to try to get better. If our oncologist had actually explained that she’s not going to get better and that treatment is just so we all have more time to prepare for her death, I think we all would have been kinder and more empathetic. We had no idea until today that the goal right now is to just help her feel better and get our plans in place for when she dies.

Is this common for an oncologist to not explain what we should be doing or what to expect? Was I expecting more than I should have?

Posted Dec 20, 2020, 3:06 AM UTC

69
Carliebeans•

It’s unusual that an onc wouldn’t say what stage a cancer was and what that means. My Mum found out at her first onc appointment that she was stage IV and incurable.

They should also outline what the ideal treatment outcome would be and give the patient the opportunity to find out whether it’s going to add any meaningful time.

Usually at stage IV it would be palliative (easing of discomfort) and an attempt to prolong a person’s life. Mum’s recommended action plan was immunotherapy with the hope to add years to her life. In some people with stage IV, the cancer can regress to the point where it is not detectable on scans (but will always come back at some point). My Mum was not one of those lucky 12%. She’s trying another treatment, the onc believes it’s unlikely to work but remains hopeful.

The one thing they usually won’t say unless specifically asked, is ‘how much time do we have? How much with treatment vs without?’. It can be very hard for them to know the answer to that.

I’m so sorry your Mum and family is going through this.

5
melodic_motionOP•

My sister, stepdad, and I were all completely blindsided by this. We’ve all been operating under the assumption that the goal is to get better. My stepdad is hopeful that we’ll get a few more years with her, but seeing how quickly she’s declining, I am not confident that we’ll get more than a couple of months.

I don’t mind not having a specific idea of how long. It’s the understanding of what the goal of treatment is. If we understood that we’re looking at the end of her life and that treatment is just to get us a little more time, we would have started working toward getting all of the legal stuff together sooner.

2
Queen-Clio•

I understand your frustrations. My mom didn't find out her stage until she straight up asked, and I've found there to be a lot of missed communication with her oncologists too which was very frustrating. First, her surgical onc made it sound like her surgery would be the end of it only to mention chemo in passing at a check in, shocking both her and me. Then, her medical onc said she had to start chemo in October, only to keep dodging the question of when can we start chemo when October came and went. He would say she wasn't ready, but then wouldn't say why. She only started this month.

We always seem to get better information and empathy from the PAs or nurses rather than the oncologists. I find the oncs to be cold and quick, especially the surgeon. They tend to be much more in the background.

I just had to take my mom to the ER after a bad reaction to her chemo left her not eating, extremely weak and dehydrated for a week. She's been there since Thursday and only today (three days later) does it seem like the ER doc has finally contacted her oncologist.

3
melodic_motionOP•

My mom went to the ER Friday, the day after her first round of chemo and had to be put on a ventilator. She’s gone downhill so fast, which is why we started searching the papers. I’m a birth doula, and one of our main goals in birth is to make sure our clients are fully informed of all medical goals and decisions, and seeing cancer from this perspective - it is boggling how much information was left out and not communicated well.

1
Queen-Clio•

Wow that's very similar to my mom's situation. She had her first chemo by IV on Dec 4, then began the chemo pill dosage and went downhill very fast, lost 15 lbs. I'm going to look into her paperwork now to make sure I'm seeing everything. Thanks for the heads-up!

1
_assNkitties•

I empathize with your frustration. My mom passed in August from stage IV non-small cell lung cancer. Her oncologist, in my opinion, did a very poor job of explaining to her what that means. I had to pressure him to tell her the stage and what that meant. Even then, he never said that she would pass away, just that it went from curable to treatable. I am a pragmatist, and I think that how he worded it was a bullshit move. I would have preferred he be blunt.

That being said. It gave my mom hope and she lived the rest of her days as if she were going to live. She made plans for the future. She was happy. She smiled and started organizing the house and picked up journaling again. She wrote letters to her estranged siblings making amends. Internally, she knew she was going to pass at some point, but his optimism gave her the strength to make the last days count.

When she entered the hospital for the last time, and there was blatant evidence that the masses in her brain were inoperable, she and I then made preparations for her passing. We let reality set in, brought her home for in home hospice care, and let her pass naturally.

Sorry for the novel. I share all of this to let you know that he may have been trying to help in a poor, misguided way. And that doesn't make it any less infuriating, and you are totally valid in wishing he were more upfront. Just follow your mom's cues, this is her journey. If it makes her feel better to continue treatment, then keep going. If she doesn't want to continue, understand that and respect her choice to stop. Sending you all the love. Lung cancer is a real fucker.

2
melodic_motionOP•

I wish my mom had gotten that experience. She died 3 days after this post was written. By the time she was diagnosed earlier this month, her body had already begun shutting down. I think we could have spent the month saying goodbye and making her more comfortable rather than rushing her through appointments and wondering why she didn’t want to fight.

I’m still angry with the oncologist for not adequately preparing us for the possibilities.

2
_assNkitties•

I'm very sorry her time was so short. Your anger is very justified.

1
crossroadie666•

Usually oncologist tries to write the stage on paper that is filed . He doesn't say it loud. This might scare patients and their family.But if you read the paper you will always find the stage. Always. Besides not taking treatment is very painful for the patient. Even if there ie no hope , treatment is given to attempt a better quality of life for the patient. It's all in there. We just have to read it.

Dont be angry at yourself or the doctor.

Also your mom must be in pain and depression. So she will not try like some patients do. Dont blame her. It happens to a lot of patients.

Just be with her .co.fort her and let the treatment go on to ease her pain. If no treatment was given she would be in more pain.

1