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My mother is upbeat despite being wheelchair-bound for the past year and with mild dementia. Her quality is life is good in the house that she raised me in and has several Home Aides, the stairlift and a team I put together to help her. I live 700 miles away and surprise visit every forty-five days or so.


She had a check up for a new plan to replace her MLTC in NY that is going out of business and I hear from the Geriatric Manager that he wanted to "talk to me". That was three weeks ago - you know how "busy doctors" are, lol - and we just spoke today. "She has a big mass in her right breast and the options are a breast surgeon to remove entire breast, or if it does not hurt, do nothing and it will eventually spread slowly or fast (we do not know) and treat it with hormones. I have to go, lets talk over the weekend. Do you have any other questions for me?" Naturally I am a man and could not think of any other questions as I sat in my car in a parking lot listening to this.


So I thought to ask my AgingCare community for some advice before I bring this up to mom again. In the past we talked about this and she is of the attitude, "Well, I'm gonna die from something.." or "At this point, I don't want anybody cutting on me..."


Ideas and comments welcome. I have a "Twisted Sister", fifteen years younger than I who by the way, has always been the opposite of whatever rational reasoning I come up with. I am POA and Health Proxy - only two of us.


ThanQ

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((((hugs))))). I'm sorry for this news. You are in the drivers seat, as both health care proxy and POA.

Can you talk to the oncologist yourself? I've found the best question to ask, after getting all the info is "what would you do if this was YOUR mother?" I came upon that completely by accident after listening to a lovely GI guy tell me what he could do to help with my mom's shrinking esophogus. Mom had dementia and aphasia from a stroke, so had mostly lost the ability to respond verbally, but I could tell from her weeping that what he was proposing was distressing her. So I asked him if he would do this procedure if HIS mom was in my mom's condition.

"Hell, no" was his response.

Ask about palliative care, and about if Hospice is appropriate at this time.

((((hugs)))))
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Guvnabee,

I think you probably knew what most people here were going to advise you to do medically given your mother’s age and her perspective as far as “we will all go at some point” (very true).

I’ll share my personal experience. My mom had a large mass in one of her breasts, she was about 75 years old when found. We went for all possible treatment including mastectomy, chemo and radio therapies, herceptin (hormone related treatment, applied like chemotherapy) and pills for five years afterwards. Results? She is here eight years later BUT her quality of life as a result of the psychological and physical damage she received is absolutely terrible.

The chemo, herceptin and radio therapy basically killed and keep killing her body years later, from bones, to teeth, stomach, lungs (terribly -terribly!- affected by radiotherapy), heart, eyes, arms, hands, skin....etc, etc. You name it, my mom is affected.

Repeating my mom words, last time said a couple of hours ago: “Living like this is not worth it. It is not fair”.

My mom is 83 now, she has gone through a calvary for the last eight years. And I’m not even going into the details of her psychological decay. We both have suffered a lot, more than either one of us ever imagined. Of course her suffering exceeds mine, as she is the one feeling, experiencing all of this; my suffering comes from watching my mother suffer so much physically and emotionally.

By her her choice, we don’t seek medical attention. She is completely done with doctors and refuses to be bothered anymore with needles, medicines, exams, doctor office visits. So, she (and I respect her decision) has decided not to know, whatever happens we will just deal with it as needed.

What I’m saying -and this is a very personal decision- is that I would not only choose not to do anything about her lump, but I would not even tell her about it and the possibility of cancer. If you won’t do anything about it, why tell her? cancer scares everyone, no matter what. I think living for however long one has left knowing that you’re sick and will die from it, versus living not knowing, specially at 94, is very different. Heaven Vs. earth difference! Yet, you know your mom and your family situation. If you feel you should tell her then that’s your decision, but I’d most certainly not do anything about it.

Hope you can find some peace in knowing that your mom has had a long life, hopefully mostly happy. And you are blessed being able to help her keep living as she would prefer. Also keep in mind that there is a chance it is not breast cancer, with no biopsy no one can really tell. And like the doctor said, even if it is, it could take a long long time to develop. Enjoy your mom, now that you have her, keep creating memories that you both can keep in your hearts forever. When needed look for palliative care.

May God bless you both and give you the strength and wisdom you need!
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I don't think you can get much clearer than "I don't want anybody cutting on me." That surely gives you an assumption against surgery, unless there are compelling reasons to consider it again.

I should talk to her daily care team, and ask if there are any signs of pain or discomfort from this thing. Get their input into how she's doing, without spreading alarm or despondency - make it clear this is a careful discussion, nobody's jumping to any conclusions.

When the doctor is good enough to spare you a little more of his valuable time, if he would be so kind, ahem... Yes, quite a lot of questions. "A big mass" is not terribly enlightening. What investigations have been done, and what further investigations might be considered. For a start.
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GuvnaBee Nov 2018
Hello! Thank you for your thoughts. Doc did call me yesterday and we spoke for a while. By "big" he said it is "walnut-sized"... we went through options like "lumpectomy', biopsy using a needle and local anesthetic, going to breast surgeon and hormones (but you have have the right "receptors", he said.
I like the idea of talking to her Home Aides - will do when I visit around Thanksgiving...
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My thought at 94 is do nothing. Going under is risky for the elderly and could throw her further into her Dementia. Also, recovery could take longer and a lot of pain. If she still can make decisions then see what she says. Not up on hormone therapy. As long as it doesn't make her sick you may want to go that way. If Mom has surgery she will be put in rehab for therapy. Would she want/like that. I think u need more info.
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Like what Rosses said. It reminded me of a 76 yr old friend who just found out she had a lump. Her friend sent her info on the radiation and the pill chemo. The side effects were awful. She had the lump removed and has been told they got it all. She figures the side effects, that could last the rest of her life, are worse than "taking a chance".

22 yrs ago my sister had an aggressive breast cancer. The chemo was experimental. She took it for 8 months. 3 weeks out of 4, she was sick. But...there could be that one cancer cell even though he scan showed cancer free. 3 or 4 months after her last chemo, they found cancer in her back. Again, they were going to do chemo. My sister passed before they could start treatment. I have always thought, would she have lived as long or longer if she hadn't done chemo?
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Your mother is 94 and she has said she doesn't want anybody cutting on her
body. She is right when she says she is going to die of something. I would
honor her wishes and NOT have them perform surgery, chemo, etc. on her at
this point in her life. Why put her through invasive surgery and treatment at
this age, it makes no sense.
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GuvnaBee Nov 2018
Hello! Thanks for your answer. I lean towards your thinking and will discuss with Mum one more time next time I visit round end of month. I tried to bring it up on the phone the other day and she acted like I did';t say anything (changed subject), lol
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I just went through a similar (but not as serious decision) with my 93 year old mom. She had a “pimple” on her face that wouldn’t heal and after a grueling day and biopsy at the dermatologist, it was diagnosed as basal cell cancer. The doctor encouraged me to get it fully removed. So I made the 2 needed appointments but really struggled with the decision. Her dementia is such that if I asked her what she wanted to do, she would have told me to “Do what I think is best”, soooo no help there. I finally decided to cancel the surgery. Even this minor surgery and stitches would have been very distressing and painful for her, and might even have increased her dementia. So I decided not to put her through it. And I never told her it was cancer. She doesn’t need to know that. This decision will be on me.

Remember that anesthesia increases dementia so aside from the surgery she may never recover her faculties to the point they are now. My mom never got back to baseline after emergency surgery 2 years ago.

Hugs to you while you struggle with these tough decisions we have to make. Think of your moms comfort and happiness and make your decisions with love.
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GuvnaBee Dec 2018
Thank you for your very relatable reply! I liked the reminder about how anesthesia plays a role in dementia. Didn't know this...Happy Holidays!
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I would at least do a needle biopsy. If it's a benign growth, you can take that off your worry list. A needle biopsy is not invasive.

Even if it isn't benign, it might be identified as a slow growing cancer so...also off your worry list at the age of 94!

I think the more aggressive breast cancers are generally found in younger people.
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GuvnaBee Dec 2018
Hi Marcia! Thank you for your suggestion. During a very recent doctor visit to get her flu shot, mum's primary doc breached the to;oc again with her. He reported to me the next day via long distance phone convo, that Mum reiterated that she did not want to "bother it".
So I guess that is that, for now. Season's Greetings, one and all!
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Guvna Bee
Thanks for the update. Please let us know how the appointment goes. We will be thinking of you and your mom.
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Your mom has made two very clear statements: she doesn't want to be cut and she doesn't want to "bother it". It is her right to determine those things for herself. You are a good son to respect her wishes. And you are under no obligation to inform your "Twisted Sister" of your mom's condition. In fact, you should keep it confidential. If you mom wants to share her health details with your sister, that's up to her. Peace.
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