What to do with a sibling who is refusing cancer treatment

If someone only read my CC posts, they would assume that i have the world’s most dysfunctional family but I swear its just because I value the smarts and the anonymity here and I have nowhere else to turn!

My dearly loved oldest sister (mid-60s) was diagnosed 2 and 1/2 months ago with an extremely rare form of breast cancer (a less than 1% kind). She had surgery and there are no current signs of cancer and the (strongly recommended) next step is that she needs to start a chemo/radiation to make sure that it doesn’t come back. One huge issue is that its not a form of cancer that responds well to chemo and it’s ER and PR negative meaning that it won’t respond to hormone therapy either.

So now we are in a holding pattern. She’s sent her records to Hopkins and they were like “yup, you got it” and just visited MD Anderson and they confirmed that the diagnosis is correct and that whether or not she decides on treatment is a personal choice. She’s in great health otherwise. I’m writing today because she just had her local oncologist scream at her because my sister will not make up her mind…she basically said that she’s giving my sister one more week to decide and then she (the oncologist) is backing out. My sister can drive people crazy so I sort of get this.

To super super complicate it, the only people who know are her husband (she had no choice) and me…she hasn’t even told her adult daughter.

I don’t know…at this point, Im not even sure of what advice to offer. Ideas?

What treatment is being recommended, since you mention that some of the usual ones are unlikely to be effective?

She could be afraid of what the chemo treatments and effects would be. Has the oncologist or someone at his/her office gone over this with her? Is there a patient advocate at the hospital who has done this?

I ask this because in Nov '19 my mother was dx with stage 4 lung cancer and given 2-1/2 months to live if she didn’t undergo treatment. With treatment her dx was about 1 year. Again that was in Nov '19. She refused treatment. Her reason? Everything she had heard about chemo. Losing her hair, how sick she would be, yada yada. We had multiple meetings, did research, my brothers, father and patient advocate all sat again in the Dr office and more or less gained up on her to ask why more specifically and to let her hear the Dr say that even if she chose no treatment, it wouldn’t be a cakewalk. That it wouldn’t be like she was then and would just go on her merry way for the next few months. We finally convinced her to give one treatment a try and then to see what happened and then if she wanted to keep going, then do it and deal with it. The chemo after talking to her dr and many others is much better than it was just a few years ago and in her case she wasn’t going to lose her hair, etc. It is now Mar '21, 16 months after my mom’s dx and she is still here today and her cancer has not progressed at all! It’s amazing! She is still fighting it and still going to chemo every 3 weeks. Her biggest side effect is extreme exhaustion about 5 days out for about 3 days. THat’s a lot of info but my point is, your sister sounds like she is wishy washy, her husband probably doesn’t want to make the decision for her, her daughter not knowing doesn’t help and she needs someone to tell her to pull the trigger and do it. And like we told my mom if she’s so miserable just stop. But she can do this, stay in remission and hopefully live a full life. Why wouldn’t she do it is what you should be asking her? Also, why hasn’t she told her daughter? That is another question. She needs family support as well as someone to be there when she has the treatment. If her husband isn’t capable then she will want someone, a friend, relative, or whatever. But she can’t keep wasting the Dr’s time she should do it. The Dr also shouldn’t be telling her he’s giving her one week to decide. That’s terrible bedside manner if he can’t understand that it’s a difficult process and show some compassion.

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So that’s the issue…the only treatment is chemo/radiation in an arsenal of poor choices…and i think that’s where my sister is stuck. Right now she’s in great health (if she didn’t know she had cancer, she would have no symptoms) but after multiple months of treatment, she’s likely to not be in good health anymore…and all for a cancer that might not respond anyway. It’s truly a terrible situation. MD Anderson is sending her stats on how many people with her rare form (and similar staging, etc) do with the treatments that are available.

It seems she doesn’t have all the data she needs yet to make a decision, if she hasn’t yet seen data on how people with her disease fare on various treatments.

That coupled with you mentioning the MD Andersen doc said ‘that whether or not she decides on treatment is a personal choice’ vs (presumably) recommending a certain course of treatment suggests there might not be a clear benefit to treatment. If there is no benefit to treatment (especially if there is a risk of side effects), I would let her choose her course of action.

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This is important information for her in making the decision.

If the proposed treatments have a low chance of preventing sickness or death from the possible remaining cancer, but a high chance of decreasing quality of life, then it can be a reasonable decision to forego them. More medical treatment is not necessarily better.

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Agree with @Mwfan1921 & @ucbalumnus. Personal decision regarding quality of life.

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First off, I’m so sorry for your sister and your family. Cancer sucks.

My $.02 is to support your sister in whatever decision she makes and she gets to take her time on making said decision.

My MIL had a horrible bout with an aggressive stage 4 cancer and sought every kind of treatment possible- surgery, radiation, chemo, more surgery, etc… She lived for 11 months and had a horrible quality of life, was in and out of the hospital the entire time, and suffered greatly. Our friend’s mom was diagnosed with the same cancer and refused treatment. While the outcome was no different in terms of life expectancy, she spent her 11 months traveling her bucket list, going to shows and games, visiting with her family, and was out at her favorite restaurant a week before she died.

I think the quality over quantity decision is super valid and in the end, it’s your sister’s decision and no one else’s.

And I would fire an oncologist who would yell at me.

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100% agree quality of life is important, but @SouthernHope it also sounds like your sister isn’t really clear on any of this and that’s why she can’t make a decision. Again, I would highly recommend she ask to speak to a patient advocate who can really dumb it down to her so she knows exactly what the treatment entails, how long it would be, how many treatments, what the side effects are, etc. Then she can actually make an educated decision. But it sounds like the reason she can’t make the decision is that she has no real guidance here and no one really asking the hard questions or providing the information to her.

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thanks to you all…I just called the nurse hotline at the ACS and they’re looking up the treatment stats for her type/grade/stage to simply help me understand whether this is a hail mary or more like it works 70% of the time but not 100%…so I will have more data by tomorrow!

Your advice and insights are so valuable and i thank you so much.

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Is there any other local oncologist? This current one does not like a good fit for her. S3 was diagnosed with Stage 3 Melanoma with a rare no primary site. I went with him when he talked to 2 different oncologists and although both were highly recommended he definitely clicked more with the second most recommended one. Attitude and trust are so important that having a team you can work with, even if only watchful waiting, is critical.

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Hey one thing i wanted to note on the oncologist…i think she yelled at my sister because she’s so frustrated with 3 months of visits and no decisions…she thought that after the Hopkins 2nd opinion and the MD Anderson in-person that my sister would have come to a resolution…but still not. And I think she yelled because she’s grown to care for my sister. it’s a tough situation, indeed.

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OP- hugs to you.

I have a somewhat similar situation (but not with a sibling, thank god, I’d have pulled out all my hair if it had been). Here’s what worked for this family:

1- Get the stats. Very important that you are all dealing with immediate, near term, long term mortality rates, impaired quality of life, how frequently opportunistic infections have cropped up even when the cancer itself isn’t lethal, etc.

2- Find an MD (does not need to be an oncologist) who has a holistic practice which incorporates other types of treatments. In my town there is a highly regarded physician who is open to all sorts of alternative medicine/other treatment modalities when appropriate. He will work with acupuncture, will refer to naturopaths or non-pharma interventions when needed, etc. He helped advise this family and the patient after reviewing the medical records, and reviewing what else could be added or done. He strongly, strongly encouraged chemo as the best option- and the highly reluctant patient agreed (and is doing great right now). So find someone who is not an “out there” type- but a board certified MD who at least will consider a non-chemo option (some docs just won’t go there- afraid of a lawsuit, even if the data is murky).

3- Create a calendar (this was very powerful). It had three parallel, horizontal tracks- one with the chemo using the doctors “best guesses” on when she’d feel awful, when she’d feel lousy, when she’d feel great; one without chemo using the best guesses on no disease progression (best case), and one without chemo with disease progression. The chart clearly showed that with a modest sacrifice of “feeling terrible” time, the chemo option was the best option for the long term, all things being equal.

Hugs to you. How awful… but make sure you are getting a doctor with a strong analytical bent to review all the relevant data before shrugging your shoulders… best wishes for a speedy and safe recovery…

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Remember the Ring theory…Support in, Dump out.

So don’t talk to your sister on how this would effect you…just talk to her to help her make a decision. Tell her that no decision is still a decision.

Ask her what her life would be like now and towards the end if she did have treatment. What would it be like without treatment.

If she didn’t get treatment what would she do? Can she do her “bucket list”? Can she do anything with covid? Would it make sense to do treatment until quarantine is over? What would happen if she stopped treatment?

But then tell her you will support her on whatever decision she makes. I do think she should tell her children once she makes a decision so they will be able to spend time with her.

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I’m of the opinion there’s no good reason to yell at a cancer patient, esp one in a rare situation who doesn’t have all the facts yet. I’d ditch this doctor yesterday.

Regarding your sister - just be there for her. Be a listening ear. Once she has all the facts, it’s her decision to make, not anyone else’s. My mom opted for treatment and it certainly wasn’t all roses afterward, but it was her choice and I supported her. She passed away. I know if I were in her situation I’d deny treatment and start pulling slips of paper out of my bucket list. Once I reached the stage where I couldn’t do much anymore I’d be on a balcony somewhere admiring the view in my wakeful moments.

With different odds, I might choose something different, esp if the odds were a lot greater than 50% for success. Hers was terminal, even with treatment, but with treatment her quality of life wasn’t there to the extent I would want it.

Let your sister find out the odds and decide for herself.

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okay, what an afternoon! Just received the report from MD Anderson (note to self: Totally go to this hospital if ever diagnosed…their report is so caring and so wonderful). Heres the relevant part of what I can share (without worrying about this showing on google someday) and perhaps you guys can help me decipher:

"at MD Anderson, we have shown that while complete pathologic response rates to chemotherapy with this cancer are lower than in other cases of triple negative breast cancer (about half the rate between 20 & 25%) there is still activity of chemotherapy in these tumors such that one would project some degree of benefit in the adjuvant setting.

But with this rare form of cancer, there are, of course, no large enough studies that are randomized to more definitively calculate the projected benefits of chemo. I estimate that in her case, reoccurance over the next 10 to 15 years, which would be an appropriate timeframe given her good health. It could be as high as 25-30% with no therapy and perhaps reduced by 5 to 7% with chemo."

whew.

@SouthernHope I’m so sorry to hear about your sister. If her situation is very rare, is there any possibility that there might be a clinical trial which she might be a candidate for?

Which means by taking the chemo it only reduces rate of reoccurance by 5-7 percent. That’s not a whole lot difference between having chemo or not. But I’m wondering how long the chemo would be given. And how does the radiation figure in?
And I’d dump the doc who yelled at me. I think your sister has a perfect right to make her own decisions in her own time.

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(quoting from a physician’s report)

Seems like there is about a 5-7% chance that the chemo will make a difference:

  • 70-75% chance of no recurrence, with or without chemo.
  • 13-25% chance of recurrence, with or without chemo.
  • 5-7% chance where chemo would prevent a recurrence that would occur without chemo.

EDITED: initially misread “reduced by” as “reduced to”.

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I’m not sure about the radiation (good question) but here’s the treatment regime > “a regimen of docetaxel and cyclophosphamide to be given every 3 weeks for 4 cycles is our recommendation. If she has inordinate toxicities with her first cycle, then treatment could be discontinued.”