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I am 78 and have a history of breast cancer some 34 years ago. I stopped mammography 8 years ago. I would take the same option your loved one has chosen for herself. I am assuming she has discussed this thoroughly with her MD. With some breast cancers without spread a simply lumpectomy can give you two decades more of life. After I understand that she has thoroughly discussed with MD her cancer, its type, its spread of lack of spread, and her decisions regarding spread in future, I can more support her own decision for her own life. As to the spread, how soon, and to where? She needs to understand if it goes to the lungs she cannot breath. If to the brain she cannot think and will be in care. If to the bones it will be excruciating pain. And no, you don't just DIE. It goes on for years, and hospice is out of reach until you have all of this spread, and have no more than 6 months. If a simple lumpectomy might stop it in its tracks then these spreads would be a bad option choice. At this point I myself would have lumpectomy, do self exams (I found my own tumor when it was pea size under my arm and mammograms were negative). I trust myself in my decisions. But this decision can go very wrong. At 70 she is very very young. What are her plans. What is she discussing? Because a lumpectomy without radiation or chemo would be my choice and a good gamble at her age. Without it there WILL be spread. According to type of cancer her doctor (oncologist) can give her some likely screnarios, but as with even working toward cure, as my own onc said "this is anything but an exact science". I am so very sorry. I only caution her, be very very very sure. Because this isn't a decision you make NOT to treat, and then you peacefully go to sleep; oh no. That isn't how cancer works. I am so sorry she is facing this down. Her doctor is your best guide for answers. They do not like to hear, from a woman this young "I am not going to treat this". They will be telling her a LOT. Be ready to discuss. Do not argue with her, as this will back her into her own corner and have her come out fighting rather than thinking. Tell her you will support her decision but you need to know she has all the facts, and has considered all the possible outcomes.
mally, I fully understand your love one's refusing to have surgery or treatment. I went though the radical surgery and didn't need chemo, but the meds I was placed on for five years had so many side effects I was not a happy camper.
As for options out there, I know science has come a long ways since I had my cancer. Maybe there is med treatment which will shink the tumor, and needing a constant watch. Some folks are terrified of hospitals and more so of surgery, depends on past experiences with other family members. And the fear of developing dementia from being placed under. There will be a month of brain fog for every hour one is under.
And it depends on your LO's support system. My sig-other was clueless and didn't think before he spoke. He pretty much went and hid. And was angry at me for getting cancer... [sigh]. Also, I was dealing with my elderly parents, to which I never told I had cancer, I didn't want to upset them. I could kick myself for not telling them, that alone could have changed the whole aspect of elder care as I was the only child.
The best thing to do, I feel, is to give your loved one time to wrap her head around this diagnosis. For me, whenever I'm faced with something frightening or worrisome, my first instinct is to feel angry and/or shocked. I step back and shut down, withdraw into myself and become tough to talk to. The next step is I start to fight back; like, NO WAY, I'm not gonna stand for this, NOPE! Then I fight, get tough, do whatever I have to do, you know? That's my process.
Your LO may have HER process to go through too. Her first instinct may be NO WAY!!!! I'm retreating from this scary situation and won't put myself thru the torture!!
Her next step may be for the survival instinct to kick in. That will lead her to make a decision to do more research, to read case studies, to ask questions, to see what others have done, to talk to women who have survived BC and gone on to lead long lives as a result. To hear the not-so-horrible stories, in other words.
Give her time and a shoulder to cry on.
One last thing: I was watching that new show on TV, DR 90210 the other night. A youngish gal had the BRACCA test which came up positive with a 69% chance she'd get breast cancer in her lifetime. She chose to have a double masectomy and breast implants put in at the same time; the surgeon removed the breast tissue, leaving the skin intact; the plastic surgeon put in the implants. Just another option for your LO, with or without the implants.
Sending prayers for her, no matter what she decides
This was my sister-in-law. She was in her early-mid 70's when she was diagnosed and refused surgery, rads, chemo. She knew what she was doing and just didn't want to do it. Everyone in the family tried to convince her that she needed to at least do the surgery. She was firm in her "no". She was in her early 80's when the metastases caught up with her and she had a bad 6-8 months before she died. She always was certain she had made the right decision because until the end she lived her life the way she wanted. Sometimes we just have to accept that it is her life, not ours.
Same as I say. I agree with my friend, because I no longer trust western medicine, not even for pets, but thanks to several of you, I now have options to share with her; if surgery is strongly indicated, maybe just that? Anyway, thanks again, guys; you always come across.
Mally, I think the first issue is what is the stage of her cancer? If it's Stage III or IV, that's a big difference in extent of the spread than a Stage I cancer.
There's an excellent magazine, CURE, which provides a range of support articles and insight: coping, family relations, and even some medical/chemical analyses of treatments.
If she does decide to go forward, reading the CURE medical articles could help her understand the choice of meds, based on her type of cancer. And she can assess their curing potential for herself.
I assume she has an oncologist, not any kind of "regular" doctor?
https://www.curetoday.com/
https://www.curetoday.com/tumor/breast (for Breast CA specifically)
Your friend might also benefit from contacting and attending Gilda's Club meetings, if there's a branch in her area.
Refusing chemo, I can totally understand and respect. Refusing surgery, that I do not understand. Perhaps someone should google "untreated breast cancer" and show her the pics so she sees what COULD happen before it takes her. I'd much rather live out my last months without that awful thing attached to my chest.
I agree. A lumpectomy is so minimally invasive. If no node testing is done, or only a few sentinel nodes, then it is really in and out surgery today, a drain for a few days IF. Heals quickly.
Many women hate the idea of a mastectomy. I would myself. My sister had a small breast cancer lump and had a lumpectomy. It was totally successful and did not change the look of her breasts at all (so far as I know, I haven’t inspected). My mother had a mastectomy and chemo, and it gave her 10 years which she said were the most rewarding of her life.
Does your loved one have a partner? What does the partner say? Some men are not at all pleasant about it, and it would be good to know if LO is worried about that.
Chemo is certainly not nice either, but I think the bad effects are much briefer than they used to be (recent BIL about 3 days each session, my mother 25 years ago much worse).
Can you persuade LO to talk the options through with a doctor, no commitment. She may have some ‘old’ ideas that are no longer true.
I had one mastectomy on the right, had an implant I hated, got rid of it after 30 years and now wish I had had them BOTH off. Ha. As my doctor says, flat is the new thing. Facebook has whole groups of flatties.
My 72 year old grandmother died of breast cancer. She had it in her late 20s and had 1 breast removed and received radiation (this was in the late 1930s so you can imagine how rudimentary it was). Still, the treatments worked, that is until the breast cancer returned 45-50 years later when she was 71 (so young). She did not have chemo or anything else except palliative support. It was her choice. I can remember talking to her about death and dying, about how it is part of life. She was a stoic person and I can't recall a time she shared a problem with anyone. You can certainly look into why she doesn't want help...the treatments, the side effects, fear of dying in general or fear of dying with something on her conscience that might have some sort of religious reason. Maybe that fear can be overcome and she'll have a greater desire to live? Whatever it is, unless she is incapacitated and unable to make decisions for herself, I think you really don't have a choice but to accept her decision and let go of trying to control her. You don't, of course, have to like the decision, it just is.
My mother had breast cancer in 1988. She had a mastectomy, and they sent her home. No radiation, no chemo. She's 91 today, and her remaining breast is about the size of the flap of skin where her other breast was. No harm, no foul, and the only side effect she had was from the botched reconstruction job that got infected and landed her in the hospital for twice as long as the original mastectomy.
I commend your loved one for knowing her own mind. She has decided not to let cancer become her identity, and my mother didn't either. (She would never have agreed to chemo or radiation had it returned.) My dad was the same way. He had cancer three times in his life, starting when he was 19 years old, and when he was given a terminal diagnosis at 88 years old, he turned to me, incredulous, and said, "This is the first time someone ever told me I could DIE of cancer." It truly had never occurred to him.
Help your LO get her affairs in order now, so she doesn't have to worry about anything later on. Get hospice arranged (yes, they can manage her pain), because not all hospice organizations are the same. You want one that will treat her like she's family, not a client. Have her meet with a trust and estate attorney and get her will, powers of attorney, advance medical directive, and trust arranged. If she trusts someone enough, she may even consider resigning from her trust and allowing the successor trustee take over her affairs. My parents did this when my dad got sick, because my mother has dementia and couldn't handle her affairs on her own.
After that, she can just enjoy her life to the fullest, and she'll have an enormous load taken off her. That alone is priceless in terms of a person's mental health.
I am going thru BC treatment right now but I’m only 48 and I was scared too. The pandemic made it worse as I was scared I would have to deal with both at the same time. My fear was way worse than the surgery and now I am happy I did it and moving forward with treatment. Fear and anxiety are so powerful and can overwhelm your mind. If that is your moms issue maybe look into local support groups or a therapist. Ultimately I just made the appointment (rescheduled a couple times) and showed up. It was terrifying but still going!
Also if anyone pushed me I would dig in my heals and refuse to move forward. Definitely her choice but give her some room to change her mind.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
As to the spread, how soon, and to where? She needs to understand if it goes to the lungs she cannot breath. If to the brain she cannot think and will be in care. If to the bones it will be excruciating pain. And no, you don't just DIE. It goes on for years, and hospice is out of reach until you have all of this spread, and have no more than 6 months. If a simple lumpectomy might stop it in its tracks then these spreads would be a bad option choice.
At this point I myself would have lumpectomy, do self exams (I found my own tumor when it was pea size under my arm and mammograms were negative). I trust myself in my decisions. But this decision can go very wrong. At 70 she is very very young.
What are her plans. What is she discussing? Because a lumpectomy without radiation or chemo would be my choice and a good gamble at her age. Without it there WILL be spread. According to type of cancer her doctor (oncologist) can give her some likely screnarios, but as with even working toward cure, as my own onc said "this is anything but an exact science".
I am so very sorry. I only caution her, be very very very sure. Because this isn't a decision you make NOT to treat, and then you peacefully go to sleep; oh no. That isn't how cancer works.
I am so sorry she is facing this down. Her doctor is your best guide for answers. They do not like to hear, from a woman this young "I am not going to treat this". They will be telling her a LOT. Be ready to discuss. Do not argue with her, as this will back her into her own corner and have her come out fighting rather than thinking. Tell her you will support her decision but you need to know she has all the facts, and has considered all the possible outcomes.
As for options out there, I know science has come a long ways since I had my cancer. Maybe there is med treatment which will shink the tumor, and needing a constant watch. Some folks are terrified of hospitals and more so of surgery, depends on past experiences with other family members. And the fear of developing dementia from being placed under. There will be a month of brain fog for every hour one is under.
And it depends on your LO's support system. My sig-other was clueless and didn't think before he spoke. He pretty much went and hid. And was angry at me for getting cancer... [sigh]. Also, I was dealing with my elderly parents, to which I never told I had cancer, I didn't want to upset them. I could kick myself for not telling them, that alone could have changed the whole aspect of elder care as I was the only child.
Your LO may have HER process to go through too. Her first instinct may be NO WAY!!!! I'm retreating from this scary situation and won't put myself thru the torture!!
Her next step may be for the survival instinct to kick in. That will lead her to make a decision to do more research, to read case studies, to ask questions, to see what others have done, to talk to women who have survived BC and gone on to lead long lives as a result. To hear the not-so-horrible stories, in other words.
Give her time and a shoulder to cry on.
One last thing: I was watching that new show on TV, DR 90210 the other night. A youngish gal had the BRACCA test which came up positive with a 69% chance she'd get breast cancer in her lifetime. She chose to have a double masectomy and breast implants put in at the same time; the surgeon removed the breast tissue, leaving the skin intact; the plastic surgeon put in the implants. Just another option for your LO, with or without the implants.
Sending prayers for her, no matter what she decides
There's an excellent magazine, CURE, which provides a range of support articles and insight: coping, family relations, and even some medical/chemical analyses of treatments.
If she does decide to go forward, reading the CURE medical articles could help her understand the choice of meds, based on her type of cancer. And she can assess their curing potential for herself.
I assume she has an oncologist, not any kind of "regular" doctor?
https://www.curetoday.com/
https://www.curetoday.com/tumor/breast (for Breast CA specifically)
Your friend might also benefit from contacting and attending Gilda's Club meetings, if there's a branch in her area.
Does your loved one have a partner? What does the partner say? Some men are not at all pleasant about it, and it would be good to know if LO is worried about that.
Chemo is certainly not nice either, but I think the bad effects are much briefer than they used to be (recent BIL about 3 days each session, my mother 25 years ago much worse).
Can you persuade LO to talk the options through with a doctor, no commitment. She may have some ‘old’ ideas that are no longer true.
I commend your loved one for knowing her own mind. She has decided not to let cancer become her identity, and my mother didn't either. (She would never have agreed to chemo or radiation had it returned.) My dad was the same way. He had cancer three times in his life, starting when he was 19 years old, and when he was given a terminal diagnosis at 88 years old, he turned to me, incredulous, and said, "This is the first time someone ever told me I could DIE of cancer." It truly had never occurred to him.
Help your LO get her affairs in order now, so she doesn't have to worry about anything later on. Get hospice arranged (yes, they can manage her pain), because not all hospice organizations are the same. You want one that will treat her like she's family, not a client. Have her meet with a trust and estate attorney and get her will, powers of attorney, advance medical directive, and trust arranged. If she trusts someone enough, she may even consider resigning from her trust and allowing the successor trustee take over her affairs. My parents did this when my dad got sick, because my mother has dementia and couldn't handle her affairs on her own.
After that, she can just enjoy her life to the fullest, and she'll have an enormous load taken off her. That alone is priceless in terms of a person's mental health.
Also if anyone pushed me I would dig in my heals and refuse to move forward. Definitely her choice but give her some room to change her mind.
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