@ucbalumnus you have great clarity in your thinking and I appreciate this very much.
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My mother got her diagnosis last May. The problem with medicine today is that NO ONE else can go to the appointments, so everything is a game of telephone. What are the other options? Who knows. What are her chances with or without chemo and radiation? No one knows. We were all like “Are you sure chemo and radiation are good for an 85 year old?”
What we did learn was that if she wasn’t going to do radiation, then that doctor wasn’t going to do anything else. If she wasn’t going to do Chemo, then no reason to go to the oncologist. The doctors weren’t saying there were no other options, they were saying there is no other option WITH THEM. My mother did do the chemo and radiation because she had a secondary tumor and that required the radiation or she’d be paralyzed by the tumor. Good choice and it worked and tumor is gone. She also had to have a double mastectomy but elected against reconstruction because she is 85.
I think if she hadn’t had the tumor she would have opted against the chemo/radiation, and later surgery. Of all her treatments, the radiation was the worst; chemo wasn’t that bad.
I think it is okay for your sister to choose to wait as long as she understands the risks (that she might not be able to change her mind), understands the options. Can anyone be on a call with the doctor? (my sister just went one time - she’s not much on the rules and no one told her to get out).
Chance of reoccurrance is listed as 25-30% with no chemo. Taking chemo reduces those numbers by 5-7% bringing reoccurrance down to around 20-25 percent if you take chemo.
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This is a very good insight…as my sister has been traveling to these hospitals for 2nd opinions, she cannot bring anyone into the room with her so she has to take it all in as the patient.
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Information on these two, including typical undesired effects:
http://chemocare.com/chemotherapy/drug-info/docetaxel.aspx
http://chemocare.com/chemotherapy/drug-info/cyclophosphamide.aspx
Note that both can commonly have effects of lower white blood cell count, increasing risk of infection. Would she be able to get COVID-19 vaccination before starting the chemo?
Meaning if the undesired effects are too great, treatment is stopped.
that has been the one good thing! Before Hopkins and Anderson would see her, she needed two vaccine appointments and her oncologist was able to make this happen for her.
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Can she have her phone on a call or videoconference with you or others in the family while talking to the physician (obviously, inform the physician that the phone or videoconference call is on)? If she cannot bring others with her because of COVID-19 restrictions, it would be reasonable to allow virtual companions in.
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Please reread the edited version of post #19, since I initially misread “reduced by 5 to 7 %” as “reduced to 5 to 7%”.
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My opinion…be a good listener…and be supportive of your sister and her decision. That is really what is important.
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She should find another oncologist, one who will give her information and support her choices. Choosing not to do treatment that doesn’t have a great record of efficacy sounds like a perfectly sound choice. All you can do is listen and offer empathy, and maybe help her think through options if she wants help with that.
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No kidding! I’d also consider reporting her.
No advice, @SouthernHope, but many HUGS!
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In my limited experience, many people will say that their physician “yelled” at them. Lose weight! Quit smoking! Change your diet!
Usually that physician is making suggestions, not yelling.
The physician may be trying to get your sister to make a decision, but she may not have lost her temper.
My sister who knows something about medicine, has my mom call her into all of her specialist appointments. I can’t tell you the times my mom thought one thing when something else was happening. I know that when there is A LOT of information, it’s really hard to try and decipher all of it.
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Agree with Deb. I had a parent who insisted that the neurologist “yelled” that it was time to stop driving, get rid of the car, hand over the keys. I called-- because if it was time to stop driving, I felt that was non-negotiable-- and was told “I suggested an eye exam and your mom started screaming that she was not giving up her car”.
Frankly, I believed the neurologist! It’s easy to project when you are in a stressful medical situation-- but it’s not always the docs fault when a patient misinterprets a suggestion as an order, or assumes malicious intent when none is present.
And yes, we took away the keys. Whether it was a visual impairment or something cognitive- we were not inclined to let an elderly person in denial operate a motor vehicle!
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Yes, sometimes people will say someone “yelled at them,” when in fact they simply scolded them or made a suggestion or statement the person didn’t want to hear.
As a nurse, I’ve also witnessed doctors treating patients like dirt without raising their voice, and I’ve witnessed them actually yelling.
If a doctor has gotten really close to a patient and in turn yells at them out of frustration, I’d say that’s a doctor who has crossed professional boundaries. No matter their feelings or intentions, a line has been crossed.
Impossible to know here which of these things happened in this situation. I would hope any medical professional would treat a patient in this circumstances with patience and compassion.
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@SouthernHope Conferencing in should not be an issue. We do this every 3 weeks when my mom has her chemo. It’s their patient advocate (my parents hired their own advocate before my mother got sick and it’s made a huge difference in their care and getting things done), my brothers, my father and me on the phone and my mom’s fabulous Dr with my mom calling into the conference call. My mother is not at all tech savy so the Dr is great about it facilitating the call from their end with her and us.
Do you know why your niece isn’t being told anything? I would really be upset if I knew this was going on with my mother/father and my Uncle or Aunt and other parent knew but I was kept in the dark. Your sister has a right to tell who she wants but should make sure she’s not telling her daughter for the right reasons.
Did MD Anderson or any other oncologist determine if your sister is a candidate for any kind of immunotherapy treatment? Chemo followed by radiation is heavy duty stuff so there must be some benefit to her if they feel she needs both. What if she only did chemo and no radiation? What are the benefits then? 25% reoccurence is still high, but what are the side effects of the treatment? A round of chemo for a few months may be horrible but may not be. If she can get through the first dose it may be manageable. Lots to think about but at least you have some idea. She now needs to decide what is best for her and the risk vs reward.
Hugs to you!
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So glad that MD Anderson has been involved. Has there been any input from a tumor board there? Or at the first hospital?
Did she have a mastectomy (one or double?) or lumpectomy. If the latter I would think radiation would be helpful. It is hard to give any other opinions without type of cancer, size, grade, LVI, ki67% etc. etc.
Most of the predictive tests are, unfortunately, for ER+PR+. I guess for a rare ER-PR- cancer, the only way to assess risk is through data, rather than genomic testing. Or was there a test used to estimate the recurrence risk with chemo?
This is not a stage 4 terminal situation and it is a roll of the dice kind of decision unless the risk, as @ucbalumnus, said, is 5% versus 10% …, but it sounds like it is 20% versus 25%.
Then again, if she is in good health, and only 62, she might do really well with chemo.
There are “lighter” chemos (no hair loss), so I wonder if there is a compromise, or maybe they won’t work at all.
When I had breast cancer I had 3 opinions plus I switched hospitals between biopsy and surgery. Everyone should have time to gather info- until they feel their decision is right. However, there is a window for chemo and she must be reaching the end of it.
Noone can tell her what to do. As Anderson said, it is a personal choice. Cancer is full of those choices, even after making it several years.
In this situation, I would wish for a clinician to go to a tumor board and give a recommendation so that your sister doesn’t have to decide! But it sounds like it is truly 50:50.
By the way, this is a great forum Breastcancer.org Community - Breast Cancer Discussion Forums Tell your sister to ask Beesie in particular.
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ps that forum has subsections on triple negative, on rare cancers, on radiation, on chemo etc. etc. and lots of support
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Does this mean a 5-7% reduction of the 25-30%, so 23.25%-27.9%chance of recurrence?
In other words, do you subtract 5-7 from the 25-35 or do you reduce that by 5-7% of 25-30%, because that is how I read it and that makes a difference.
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Here one person can go. I have been going within my adult son.