Girlfriend has Breast Cancer

calspecsteve

My girlfriend was diagnose with breast cancer 3 month ago they want to do a mastectomy but she is refusing, we were scheduled twice for the surgery but she cancelled both times...she is a past RN....I thinking of doing scare tactics, like going to look at caskets, pricing plot sites, etc....

Let me back up for a minute....her name is Sandy she is 65yr old....at 44 she had a brain aneurism, she doesn't speak, and she is in a nursing home, I have power of attorney, I'm also thinking of contacting our attorney to try to get an order so I can force her to have the surgery....

any suggestions

Georgia1

Hi there. If you have a medical power of attorney I think you should request copies of the mammogram, ultrasound, MRI and/or biopsy reports. It's hard to know what the right surgical procedure is without them, and if you post something here with details perhaps we can be of more help. For example, a lumpectomy might be an alternative.

WC3

I'm sorry to hear about your girlfriend. Does she have any cognitive impairments or are her impairments merely physical? What are the reasons she is refusing a mastectomy? Has she had a second or third opinion from oncologists and breast surgeons? I got three opinions. The first surgeon said if I could get away with a lumpectomy but I wanted a mastectomy, he would do one, but wanted me to see the oncologist first who probably would have wanted the receptor typing which was not back. The second surgeon said because my breast were small and the tumor was relatively large, she reccomended a mastectomy, but at this point I had not met with a reconstructive surgeon. By the time I met with the third surgeon and an oncologist and my receptor typing was back and since I was HER2 positive they felt neoadjuvant chemotherapy and targeted therapy would shrink the tumor and and I could do a mastectomy or lumpectomy but if I did a lumpectomy I would need radiation.

If your girlfriend has no cognitive impairments I think you have a responsibility to respect her wishes as she entrusted you to do that when she gave you power of attorney. Her reasons for not wanting a mastectomy should be taken in to consideration and she should consult with more than one breast surgeon and oncologist and her concerns should be discussed and addressed.

marijen

That’s a good idea Georgia. Maybe a doctor or someone her could explain why they are suggesting mx to you, Steve, before forcing her.

Cpeachymom

Sorry, first reaction is Who the f are you to “force” a grown woman to have surgery she doesn’t want to have?!

Maybe there is more info I’m missing, but I’m a Huge champion of personal rights and choice. Just because someone is in a nursing home doesn’t mean they don’t know what’s going on.

Her body, her life, her decision

wrenn

If she has no cognitive impairments I think she needs to reconsider who speaks on her behalf.

oxygen18

I'd feel more at ease if you and she each had their own attorney. If she is compos mentis she decides.If she is depressed perhaps you can push to address that.

You need to supply more details , for ex., any other limitations besides aphasia, what is her current quality of life, cancer dx and prognosis, what does her advance directive say, does she have immediate family and how supportive are they. Again it's her decision and nobody else's, and off hand, first suggestion is to consult with an oncology palliative care physician.

calspecsteve

Lumpectomy is out of the question, She couldn't take the chemo. Five days a week for six weeks..... Nine brothers and sisters two daughters and four grandchildren . None of them come to see her...that's why the courts gave me power of attorney....I see her 6 days a week

calspecsteve

she does not know what day it is she does not know what month it is she can't even tell you the year ,

WC3

Chemo is sitting in a chair or bed for (in my case) 5 hours hooked up to an IV bag. Sometimes fall asleep because they give you benadryl and sometimes ativan. There are side effects but they manage side effects a lot better than they used to.

mustlovepoodles

I've never heard of having chemo 5 days a week for 6 weeks for breast cancer. Could you possibly mean radiation?

Frankly, I take umbrage at your wanting to force surgery on this woman. Even if she has some cognitive impairment she retains power over her own body. She still has the right to say no. I'd be very surprised if a doctor would do surgery because YOU think it's best, completely bypassing your lady friends wishes.

I get that you're worried. But your concern does not trump her civil rights.

elisa60

mustlovepoo thank you for clarifying that up. I was diagnosed yesterday with breast cancer and got to start chemo and I am so glad that chemo is not giving everyday.

Micmel

what a heavy topic to stumble upon. First off I am a bit confused here. How could she have refused the surgery two times if she is unable to communicate? How does she even know what surgery is and what it even means, if she doesn't know the day? My DH is my power of attorney, depending on what the doctors recommend and maybe a second opinion would seem appropriate in this case. If she cannot communicate and lays in a bed all day non functioning, then making her have a mastectomy could be very disturbing to someone who doesn't understand things. If she has a moment of clarity and looks down and it's gone, it could be traumatically even more damaging to her. If she is suffering mental issues already, and is. Or isn't capable of making any comments or sentences that are understandable and comprehensive. Then she's already in her own hell. It also depends on the staging of her cancer. A lot of things are unknown for us to give you any suggestions for someone who is clearly already in a bad way. I get you're worried. But being a power of attorney means you act on their behalf doing what “they would want" not what you would want. I just sat in front of an attorney not long ago and did my living will And power of attorney. You said “they" gave me power of Attorney, who is they? I feel so sorry for this situation being the care giver is tough! There are just a lot of unknowns in this posting request. I wish you luck. Be gentle with her. Sounds like you should be holding her hand instead of forcing her to do anything she may not want or understand. Good luck sincerely ~M~

WC3

She doesn't know what day of the week it is but she is refusing a mastectomy. What are her reasons?

Does she understand her diagnosis and her options and what she would have to do to make it safe for her to avoid a mastectomy?

I hate to say it but men, when given the chance, often force their will on women without regard fir the woman's perspective or experience and how that affects them. I'm fine with a mastectomy if needed for myself but some women consider their breasts an integral part of their identity as a female and a mastectomy would devastate them, even with reconstruction.

It's important you find out why she objects to a mastectomy because if she is objecting, even if she has cognitive impairments, she has a reason.

My grandmother, who has dementia, often refuses to go to the the ER when necessary. She has always done this, even before she had dementia, and has always waited until her condition has worsened to the point of needing an ambulance. It wasn't until the dementia started to erode her pride that we got an answer out of her. She is afraid of hospitals because she thinks she will die there. My grandmother is 90. When she was little, people often didn't return from a trip to the hospital.

Lately she has been hiding toilet paper. Is it because Johnny Carson caused a run on toilet paper in the 70s or because when she was young, she had 5 kids and didn't drive so she kept a secret stash of toilet paper for herself? It seems strange to us but she has a reason for the weird things she does. They don't make sense in modern context but her mind no longer exists in modern context some of the time. Sometimes she is in her living room in 2018 but sometimes she is in 1953 and thinks she is in a strange place and has to get home to her kids.

We sit with her and calm her down and explain to her that she is where she has lived for 20 years and her kids are all grown up and some of them are right next to her. We show her photos of them growing up and do our best to bring her back to present time.

As for the hospital, now that we know she is afraid of it, we first try to get her in with her doctor, who she likes. If he tells her to go to the hospital, she will go because she likes him. If it's after hours and she can't see him, she has a choice between going to the ER in the car or in an ambulance, and she knows we will call one so she gets in the car. We reassure her that someone will stay with her and she is not going to die there.

My grandmother's objections to things are not irrational to her and that needs to be respected and why her choices aren't always the best needs to be explained to her and for us to explain properly we need to know her perspectives and the reason for her objections.

Your girlfriend might be opposed to a mastectomy even if she didn't have brain trauma. She might opt for neoadjuvant chemotherapy and a lumpectomy and radiation if that were a viable option for her.

Icietla

2 hours ago calspecsteve wrote:

she does not know what day it is she does not know what month it is she can't even tell you the year ,

---

Icietla writes:

I resemble that remark.

--------------------------

Mar 28, 2017 04:26AM - edited Mar 28, 2017 04:46AM by Icietla

[...]

Among my other neurological complications are my memory problems, especially as to short-term memory [As some examples, often I immediately and completely forget conversations and other experiences and information until specifically reminded of them; and sometimes reading is very slow and difficult for me because I cannot remember my way through reading a sentence (by the time I get to the back end, I have forgotten everything about the front end, and it can take me many more tries over at reading through any single sentence to remember my way through and understand it)]; frequent long struggles for word retrieval; variable tinnitus; frequent balance problems; proprioception problems, so I must always be in lighting and keep battery-powered lighting devices around in case of power failures; very easy startling; noise sensitivity-to-intolerance; and my sense of time – especially but not only calendar time -- being so different from before. My ability to communicate in language has also got appreciably better from the worst of it some nine years ago. My abilities are variable but only limited anyway. [My sincere apology if my writing is incoherent.] In short, as to my cognitive impairment, it is all very like traumatic brain injury, because it is clearly brain injury, but injury by (disease) chemistry means. [...] Also, much of the time I am extremely tired, and I am always at least very tired.

[...]

https://community.breastcancer.org/forum/69/topics/763459?page=56

moth

I'm unclear if this woman is compos mentis or not. Not knowing days of the week or year is not really a criteria I'd go by. I know some people who pay little attention to time or calendars or politics (so the standard oriented to time & place questions in ER can be hard for them to answer), but they're very clear and aware of their own desires, needs and what choices about life they want to make.

I sincerely hope this woman's facility has an excellent medical director and an ethicist that they will consult to determine her ability to engage in decision making and to assess what prior advanced directives she left.

If her quality of life is poor, and if she left any advanced wishes about her care, or if she's able to express them now, those should be respected. She may not wish to prolong life & may choose to move to palliative and hospice care instead. That is her choice, not yours.

It would be battery to force a person to undergo treatment if they're capable of refusing.

This must be very difficult for you. I would suggest you asap find a counsellor to talk to. You sound overwhelmed and angry and wanting to control things - and I get all that. I really do. But you need to step back and deal with your emotions separately so you can approach this calmly and compassionately. Your idea of the scare tactics is IMO mean (and might backfire anyway because she might actually want to die)

I do wish you both the best.

calspecsteve

Your correct he will not do the surgery because she said NO.....he said with the surgery and if everything goes well not into the limp nodes she would need no chemo....in the hospital in the morning out the following morning,,,one follow up and she good...….the cancer is very small like 1/2 cm....I think that's what he said....very slow growing....

That s the problem she heard SLOW GROWING.....and now she think she will live forever.....we went for a second opinion.....he told her she needs the surgery.....if she waits to long there is no going back....that why I though scare tactic....she needs to see the end results or something along those lines so it make an impression in her mind....because reasoning with her does not do the trick....

as far as power of attorney, I don't even know if that would be possible....right now she is in no pain or discomfort...but once this spreads she will be hating life and wanting to know what we can do for her....

about 2 weeks ago her boobs were hurting and all she could do was ask me to get her to the doctor and have this taken care of for about a week straight ….now it went away and we are back to NO.....and she doesn't remember about complaining her boob hurt......flip / flop....flip / flop......for the past 3 month......

WC3

If it's slow growing and small, why a mastectomy instead of a lumpectomy? Mine was up to 3cm in a B cup breast and aggressive. Since the chemo has shinked it they are thinking I can do a lumpectomy and radiation. I said mastectomy because of my family history and breast surgeon still they felt it wouldn't reduce my risk of recurrence much more than a lumpectomy and radiation but plastic surgeon says on account of my B and a half cup size, I wouldn't have much volume left and it would be better to do a mastectomy full reconstruction.

But why does your girlfriend's doctor say mastectomy? That sounds a bit old school thinking for the situation as you have described it.

Also breast pain is not one of the more common symptoms of breast cancer. Most tumors are painless. Mine was. They are more concerned when you have a painless breast lump than a painful one.

oxygen18

Calpecsteve, the situation is becoming a bit clearer now. You are right, this calls for urgent decision making. I f she wants a lumpectomy, please look at the page titled, Radiation treatment schedule, on this website. Partial breast irradiation may be an option, it takes a week only, ask the dr if she is a candidate for it, even if it may not be the optimal choice of radiation schedule. By the way, is the brain aneurysm just sitting there, causing some limited symptoms, and hasn't ruptured? Is she receiving good neurological care?

I am glad you are there for her, and how are you doing through it all?

mustlovepoodles

Steve, I don't think the answer is to manipulate the situation to get her to do what you want. Showing her caskets and making final preparations is just cruel. I know the situation is maddening--you love her and you want her to be okay. But SHE is the one who gets to drive this little red wagon. Frankly, as debilitated as she is, I can totally understand if she chooses only palliative care. Your main job is to be supportive of her choices.

calspecsteve

because of her medical history, and condition, lumpectomy also requires chemo for 5 or 6 at 5 day a week.....as far as the pain I know there is no pain....but in her mind she woke up with some sort of pain and immediately though it was the cancer and wanted to see the doctor and have the mastectomy...then it went away and she was back to saying NO.

calspecsteve

she has a clip in her brain for 20 years....paralyzed on right side in wheel chair in a health and rehab center in Tarzana, Ca.....she is Medi Medi ..medical and medicare…..I take her out to movies and lunches....

here is the hard part of this whole thing...They schedule her for the operation....we are a GO....prior to the operation she needs a per-op exam which is about 2 to 3 weeks after she see the surgeon, then after that the operation follows about 2 week later.....then they want her at the hospital at 5:30am....do you have any idea how hard it is to get her ready at that hour.....to drive her to the hospital.....it like moving Mount Rushmore with an attitude.....there is screaming and yelling like you cant believe.....do they care NO......and after all this time her YES for the operation turn to NO......I ask if we can put her in the hospital the night before, which would be so much easier, of course that a NO....I need to get her back to the doctor for another Mammogram so he can tell her its gotten larger and it needs to be remove pronto or else...if he would do that...I don't know....this is a freaken night mare....

I want to thank everyone for there input....I have picked up a few tips....even though I don't understand a lot of the lingo....

oxygen18

What I am hearing you say is, your GF has a will to live, she is worried about breast symptoms, she would not want to let the cancer progress, she is ambivalent about mastectomy.

Your challenge is to neither have her treated against her will, nor have her undertreated if she wants to stick around for quite a while--all this, while she seems confused or uncertain about what she wants to do.

Presumably you have heard from her primary care physician, the nursing home social worker, and other professionals caring for her?

If she is in a nursing home, she most likely has an advanced medical directive which kicks in if she becomes unable to decide for herself. Have you discussed it with her?

How you yourself are doing is also an important part of the picture. You need expert help and support with this complex case, this is not something one can DIY, and I hope the questions we have been raising are helpful to you.

The only oncology specialist she has seen is likely the surgeon. Some surgeons are not too comfortable just letting a patient go gently, even though sometimes it might be the kindest thing to do.

Oncology palliative care specialists are very attuned to, and respectful of patients wishes, and may be best situated to help her understand which options make the most sense for her, and among those, which option she really wants.

Your local department of aging advocacy office could also be a resource for you.

If you live in a small community with few specialists, and you are not fully comfortable with the nursing home medical staff, find a compassionate internist who has geriatric experience.

Whatever experienced medical professional you consult, I know that you will do it as soon as feasible, if not earlier

Please, keep us posted if you would.

I am thinking of you both, sending good wishes.

P.S. I think someone conveyed inaccurate info to you, it is most likely six weeks of daily radiation, not daily chemo, so it is worth exploring the alternative of partial breast irradiation, if lumpectomy turns out to really be acceptable to her.

oxygen18

I just noticed your second posting. Sorry you have been going through so much.

In the event that she really decides to do the surgery, I hope they can schedule her for later in the day, and that they generally have a more helpful attitude.

Take care.

calspecsteve

yes, daily radiation....first off is getting her there and second is she willing to go .....this is out....

The Skilled nursing facility and Staff does not participate in this...No advanced medical directive that I'm aware of

Social Worker has spoken to her a couple of times...not much interaction there that I know of

I make all of the doctors appt. and handle all transportation.....all they do is feed and medicate her get her up bath her and put her to bed.

oncology? she just has the surgeon....her primary Doc is a quack...they are only requires to see her once a month. And they don't even do that they just come in and sign her chart....

calspecsteve

and yes she does have a will to live....

wrenn

She might be overwhelmed with too much information if she thinks there will be surgery and then daily treatments and other unknowns. For example you say she will have chemo every day and that never happens. Radiation is not usually given after mastectomies unless the tumour is large.

Surgery alone could very well cure the cancer and nothing further will need to be done or at least it will give her a leg up to have the actual tumour removed if further treatment is recommended and she decides against it.

I had mastectomies and chemo was recommended for an aggressive cancer but I didn't get it and am fine 5 years later.

I would explain to her that all she has to do for now is to have it removed so her body won't have to fight so hard and that it will only require a few hours at the hospital and most likely recovery won't be that bad.

Then once she is recovered from that the rest of it can be presented to her. Keep it simple with one thing at a time. Many people when given too much information get anxious/hysterical or just shut down.

It might help for you to talk to someone to deal with your anxiety so you can present the information to her in a calm way. She may pick up on your fears and is overwhelmed by it.

WC3

calspecsteve:

Are you saying she has not seen an oncologist?

Icietla

>>.I take her out to movies and lunches..<<

Wonderful, calspecsteve! Her conditions can be very isolating. It is good for her to get out, socialize more, and have changes of scene. Zoo and Park visits (not to memorial parks, though) would be nice, too. The place where Sandy is -- does it allow healthy, well-behaved pets to visit?

Typical (infused type) chemotherapy would be not administered daily, and its advisability/necessity would not depend on the type of treatment surgery.

Adjuvant radiation treatment is ordinarily given every weekday for some weeks. The advisability/necessity of radiation treatment often -- not always -- depends on the type of treatment surgery. Is intraoperative radiation treatment (IORT) an option for her? Or another shorter-than-usual course of radiation treatment?

She needs her options among the advisable treatment plans explained to her, simply and slowly (or not too quickly for her easily to follow and absorb), and in an otherwise quiet setting. She needs to understand that a course of [however many] radiation treatments, every weekday for [however many] weeks, necessarily goes with the choice of lumpectomy surgery, but can likely be avoided with the choice of mastectomy surgery. Her Doctor/s should explain these things in ways she can understand. Her Doctor/s should also remind her that, as among cancers, "slow" is a relative term -- that a cancer being slower-growing means that it is not the fastest-growing, not that it is not a life-threatening cancer.

If she says she prefers lumpectomy surgery -- is she agreeable and willing to cooperate with all the necessary daily (weekdaily) trips to have her radiation treatments? -- or would IORT be an option for her case?

What treatment/s she is to have, if any, must be up to her to decide.

>>.I need to get her back to the doctor for another Mammogram so he can tell her its gotten larger and it needs to be remove pronto or else...if he would do that...I don't know..<<

This is about your (perceived) need, not medically necessary for her, and a lot of needless bother for you and her, besides for the others to be involved. Seems to me that it would be much simpler and serve the same purpose to have examination with a portable ultrasound unit. Doubtful, though, that her Doctor would order either, and doubtful that her insurance would cover either.

Take a few days off, calspecsteve. Get some rest, peace, and quiet, and try to turn your mind to other things to give it a break from your frustrations with her for now.

oxygen18

calspecsteve,

My impression is you are good at helping others, not so good at asking for help.

You get things done. She wants the problem taken care of, like, yesterday, yet she is afraid or confused. Alas neither the nursing home nor the hospital nor the relatives are reaching out to see how they can help, and they must help.

If Cedars Sinai is where she'd get the surgery, you can call 1-800-CEDARS1 and ask for their Clinical Oncology Social Workers. They can deal with the ambivalence, help prepare an advance directive, handle financial concerns, transportation, and, if you choose, provide support for you for all you are going thru.

She needs medical transportation services. Even with mastectomy, it is multiple trips for physical therapy etc.

You can accompany her in the medical transportation van but don't have to.

Her situation requires a team, not only one lone ranger taking it all on his shoulders. You are in charge of hiring the team that will help her. The Clinical Oncology Social Workers can also connect you with a Breast Nurse Navigator, as well as a good primary care physician that you can trust.

(I'm not using first names, though it's likely ok, just out of an abundance of caution re privacy)

oxygen18

If she is reluctant to go into the van without someone she knows, it's something else that can be discussed with the social workers, so a way can be found to make her feel comfortable about it.