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Topic: mom wants no treatment

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  • Posted on: Jun 9, 2009 12:25 pm
Joined: Jun 2009
Posts: 5
tld33 wrote:

hi am new to board.mom had xray on leg due to pain went to doc yesterday dad went with  her doc had her chart asked her why she hasnt been going to treatment for her breast cancer that was diagnosed 2 years ago. my dad was shocked knowone knew she had it she kept it from us and was never treated now she has to go for a pet scan tomorrow and bone scan in couple days. frpm xray doc said her femur bone is deteriating and doing bone scan on it i know it maybe bone cancer. she also has alot of pain in belly and swelling. why would she do this to herself. she has been depressed for years and never got treatment . we are very close family and have tried so hard to help her she is very headstrong and short of tying her up and putting her in car she has refused to get help for her dpression. has anyone else experienced any of this? if it has sopread to her bone what will happen if she refuses treatment? how long will she have? she is taking 400 mg of tramadol daily for femur pain and she still is in alot of pain. cannot find any websites with info for people who opt out of treatments. can anyone direct me to one? thanks.

Posts 1 - 20 (20 total)
ddlatt
NV
Joined: Nov 2008
Posts: 431
Jun 9, 2009 12:53 pm ddlatt wrote:

dear tld33, my birth mother (i'm adopted and found all this out later) did exactly as your mom. she was 64 and diagnosed with breast cancer and didn't tell anyone and didn't have any treatment. she was worried because she didn't have health insurance. once she turned 65 and could get medicare, then she told her family and had chemo. her breast cancer had spread to her bones. i don't think anyone can tell you how long your mom has or what will happen to her - everyone is different. i found this website that addresses your concern about what to do if your mom decides not to have treatment (scroll down): 

http://www.cancerbackup.org.uk/Resourcessupport/Advancedcancer/Copingwithadvancedcancer/Decidingaboutyourtreatment 

all the best to you and your mom -

Age 54. IDC. Stage 1, 1.2cm tumor 1 millimeter from chest wall. Had ultrasound, MRI, core-needle biopsy. Sentinel node biopsy (nodes clear) and double mastectomy 11/20/08, no reconstruction. AC/ Taxol, 35 tomotherapy radiation treatments.
Dx 10/3/2008, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2-
JO-5
OH
Joined: Oct 2008
Posts: 1,891
Jun 9, 2009 01:14 pm JO-5 wrote:

It may be a generational thing. My aunt hid the enormous lump in her breast until one day her daughter accidentally saw it. I have another aunt that refused radiation treatments because she didn't want to be a bother to her kids - driving back and forth.

There is a lot that can be done, especially for the pain.

Depending on what the test tell --- the Dr. can give a pretty good idea about prognosis..... but only God knows. I know a man - given 6 months to live with brain cancer. Three years later - he is still going strong!

God bless!

JO - Lumpectomy w/ clear margins- 36rads w/boosts - cellulitis 3x - mild arm LE - Breast LE w/rad. fibrosis - IF EVERYTHING MADE SENSE AND WE UNDERSTOOD ALL THE REASONS - FROM WHAT PLACE WOULD COME THE TRUST?
Dx 4/4/2004, IDC, , Stage I, Grade 3, 0/16 nodes, ER+/PR+, HER2-
baywatcher
Key West, FL
Joined: Nov 2008
Posts: 349
Jun 9, 2009 01:19 pm baywatcher wrote:

tld33-

I'm so sorry about your mom. Maybe she was afraid of treatments..afraid of surgery (losing a breast) and chemo and radiation. She probably figured that if everyone knew she would be forced to do treatment. Maybe when it was found it had already spread to her bones. While it is hard on everyone to not have treatment, I kind of understand her. Treatments can be a nightmare too. It is amazing that she was able to keep it a secret. No wonder she has been depressed.

Deb-from-Oh…
Loveland, oh
Joined: Oct 2008
Posts: 1,121
Jun 9, 2009 01:33 pm Deb-from-Ohio wrote:

I'm sorry to hear this...my Dad did the same thing a few years back. Him and Mom had been married 50 yrs, she passed away 10 yrs prior to him..When he found out, he  told me, I"m tired, and I miss your Mom and want to be with her and he refused treatment. Of course he had liver cancer also which if you don't treat, spreads quickly. He was with us a few months and then gone. He was 73. Sounds to me as if your Mom has already resigned herself...she needs someone to talk to, to be told this is treatable sucessfully. And it's no wonder she's depressed, hiding something like this, has to weigh big time on your heart and mind.

Prayers are with you

Deb

www.caringbridge.org/visit/debbiecaudill--Kickin Cancers Butt one cell at a time!
Dx 10/23/2008, IDC, 3cm, Stage IIIa, Grade 2, ER+/PR+, HER2-
61linda
Joined: May 2009
Posts: 64
Jun 15, 2009 07:45 am 61linda wrote:

Sounds like your Mom has been depressed for a long time and not dealing with bc is her way out. I don't think you can force mental health treatment on anybody short of having them declared legally incompetent or doing a conservatorship. The same may be true for purely medical treatment, too.
My Dad refused treatment for lymphoma and lived four years from diagnosis.
It's really hard to accept someone we love not wanting treatment for a disease we know can end their lives. If your Mom is far advanced and still refuses treatment, maybe her doctor will make a referral for hospice care if it's appropriate. They do a wonderful job with pain control as well as helping everyone live with what time she has left. Palliative care may be an option for her, too.
Please do keep us posted on how you and your Mom are doing. I wish you and your family courage.

tld33
Joined: Jun 2009
Posts: 5
Jun 19, 2009 12:14 am tld33 wrote:

thanks for the replies good to know not alone. moms bone and pet scans came back. she has cancer in all her bones lymph nodes stomach chest and lungs. this info came from her general practioner. she has appt. to see oncologist next week. everyday she gets new pains in body. her pain meds are only working couple days then have to be increased or changed. talked to a lady from hospice who said she was shocked mom was still alive when i told her where the breast cancer had spread. was wondering if anyone has any idea how long she has. from what i can guess would be 2 months .

lexislove
Joined: Sep 2007
Posts: 1,941
Jun 19, 2009 01:08 am lexislove wrote:

wow...I'm so very sorry about all of this. I hope with what ever your mother decides to do, you can all be at peace. Please update us to how you and your family are holding up.

cheri7
Joined: Jun 2009
Posts: 4
Jun 19, 2009 02:48 pm, edited Jun 19, 2009 02:57 PM by cheri7 cheri7 wrote:

My Mom In Law (94) was recently diagnosed with Invasive Ductual Carcinoma w/Lymph involvement. It was "accidently" discovered when we took her in for angiogram and possible stent. We found out she had a lump the size of a walnut,but the cancer is the size of a lemon.  She had been HIDING it from her doctors for who knows how long. She wanted to get her heart fixed first then she said she was going to deal with the lump.  HA.  Her brother died of lung cancer. So she knew what she was dealing with.  Problem is... with Congestive Heart Failure she is not a candidate for ANY surgery to try to abate the cancer. My husband is beside himself with anger over her hiding this. He has diabetes II and she claims not to tell him things to eliminate his stress. Even though we have told her waiting is more stressful.  She won't tell us if she is in pain. We go to oncologist on 6/22.  I am trying to help my husband and his bro help their mom... anything those who have gone thru this can tell me, will greatly help me. Without the stent in her heart, she may not have to endure too much.  The heart failure is progressing.  Thanks. 

61linda
Joined: May 2009
Posts: 64
Jun 19, 2009 08:24 pm 61linda wrote:

I wish there were magic words that would work for your families. The situation you both are dealing with is heartbreaking. Your MIL may have outlived her friends and finds her time with us too hard. Life cannot be easy for her even before bc and heart disease.Still, she might now want treatment and medical science can do wonderful things. My Dad was 93 when he passed and he mourned the loss of his friends much more than his own advancing debilitation.
I guess my best advise is to just let her know you love her, continue to help her in any day to day situation you find yourselves and do your best to understand her point of view. Now you know the worst, maybe she will talk about it. The more you can talk together without anger or blame, the better. Respecting someone else's choice when you think time is short is really, really hard. Nobody can predict how long someone else will live under these circumstances. Hospice nurses probably can give you a better idea than anyone.
As a practical thing for your husband, eating properly and if he is willing, lots and lots of sex will distract him. It worked for my DH at the end of his Mom's life and I felt like I was helping him cope. If either of you are having trouble with sleep, ask your doc for something and explain the situation. Please do keep us updated, both of you. You are in our thoughts.

cheri7
Joined: Jun 2009
Posts: 4
Jun 23, 2009 06:38 pm, edited Jun 23, 2009 06:43 PM by cheri7 cheri7 wrote:

I have been sick with Bronchitis since I posted my dilema and then since not used to these posts had a hard time finding where it was.  Thanks for your replies of concern. All is helpful.. My MIL...is enduring appts on behalf of her sons. She told me yesterday at Oncol..she is doing all of this for them.  I get along with her very well and have told her a couple of times that she needs to decide what is right for her not them. I told both of them what she said later. The Oncol. thinks they can do a lumpectomy (and I suspect will require Auxilary lymph removal) One lymph gland is very swollen.  It ALL has to be done under a LOCAL., because of her heart failure issues. I wish they would let me in the operating room. I could help keep her calm.  She not only panicicked during an attempt at Stent but ended up with fluid in her lungs an the stent was aborted and she was admitted. I am doing TONS of research so I can ease her into what to expect and following some of what I see here.  We see Surgeon Wed.  Then she will have to decide. My husband and Bro I Law are thinking/hoping this surgery could eliminate further pain and problems down the line for her.  She probably only has less than a year to live anyway with her heart.. But they don't want her to have Pain on top of it.  So far none. The lump is size of dried flat apricot (per oncol). I showed her in store yesterday. But it is the lymph and I know about possible complications that come.  I have told her I will stay with her after surgery if she decides to do it and help with her care as needed.  I have a lot of Faith and do a lot of praying.  She and her family don't. Thank GOD for my faith. IT really helps me help them all.  Do you know of a section of those who have gone thru lumpectomies?  I want to get direct feedback to better help her. (Erma is her name)  THANKS AGAIN.  Hope to get back more ofter

just_mary
Lucasville, OH
Joined: Jun 2009
Posts: 49
Jun 23, 2009 06:54 pm just_mary wrote:

tld33,

My mom died 9 years ago this month.  She found a lump in her breast and didn't tell us.  She started doing odd things aroung the house and my younger sis started asking questions and it finally came out.  By the time we got her to the doctor, it had spread to her bones.  Her hip was almost completely eaten through by this beast.  End result, we found out about the cancer Sep. 1999, she had hip surg Jan.2000 and never walked again, and pasted away June 14, 2000.  We never ask the question how long, because we knew she was in God's hands.  So spend as much time with your mom that you can. My mom slipped into a coma about 3 days before she pasted away at home.  That ws her wish to stay with us and not go to a hospital or nursing home.  Hospice is a wonderful thing, so do get hooked up with them, they do alot for the family also.

God Bless You, Mary


Dx 4/28/2009, IDC, 4cm, Stage IIb, Grade 3, 10/10 nodes, mets, ER+/PR-, HER2-
tld33
Joined: Jun 2009
Posts: 5
Jun 24, 2009 01:50 am tld33 wrote:

so sad to hear... doc said he could see through moms femur bone gonna do treatment for pain some type of radiotherapy thing. any type of chemo or radiation is not gonna happen all docs said cancer to progressed to far. dont think she can physically handle it either. have a question about her fluid . she is taking fluid pills but they dont work her stomach legs feet are huge. she dont go to next doc for 6 days the doc she saw today for pain said other doc might put her on hormone drugs was wondering if this will do any good cancer in belly has eaten through most of the lining. am afraid the fluid will go to the lungs before  she sees doc is this possible? everyone tells me to calm down that the docs know what they doin but i worry about every little thing and she wont let me go to doc s with her and her and dad ask no questions,

61linda
Joined: May 2009
Posts: 64
Jun 28, 2009 12:13 am 61linda wrote:

It's impossible for anyone to tell where the mets will go and what symptoms they will cause next. Part of what makes this so hard is how quickly everything progresses and wanting to respond to immediately which can feel impossible.

Sounds like all that can be done is control the pain and hospice is the next step, especially given the docs are saying treatment is palliative at this point for both of your family members. Hospice is available 24 hours a day, 7 days a week at least by phone. They can respond quickly and do wonders for everyone in the family. They help people live their best in the time that's left and they are the experts at what they do. Another way to get information is to call the Am Cancer Soc and ask to speak with a resource nurse.

Cheri7, if you check the favorites box, you can get right back to this thread quickly. You can also start another thread asking about lumpectomies if that's what your MIL decided. I can tell you the lymph node disection hurt the worst after my bilat mx.

tid33, I sure can relate to worrying. That's pretty much all that's left when there isn't anything else you can do. Will your Mom let you talk directly to her doc over the phone? Anything you can do to help relieve your stress is good. Do you run or swim? Pray if you are a believer. You also can ask your own doc for something to help your own anxiety after you explain what's happening. That commercial about better living through chemistry is right on target.

I'll be thinking of you both and wishing for strength and peace for you and all your families who are going through this together. Please keep posting when you can.

tld33
Joined: Jun 2009
Posts: 5
Jun 29, 2009 10:40 pm tld33 wrote:

thanks 61linda yeah been taking some xanax for my anxiety seems to work pretty well. moms been in hospital since thursday she vomited black stuff which was blood and has been pooping blood for awhile . of course she told knowone. dad saw the vomit we took her straight to hospital she was dehydrated and anemic they did more tests said it coming from her liver. the drained fluid from her belly today . she feels little better but still on the morphine. we didnt even know it was in the liver. she said i could be there when doc comes in tomorrow so hopefully can find out everything. new doc came in yesterday told her he wants to do chemo he said he cant quarentee her but that she sould live 5 more years and with some people the chemo has no side effects is this true? everyone wants me to talk her into chemo she says she just wants to die and be in no more pain... mom is a straight shooter i dont want to mislead her at all the docs wont give her any percentages of outcome of patients in her condition. the brain scan came back ok. how do i know the right thing to do? who can i go to who will give straight facts? mom doesnt trust this doc  cause he wont answer her all he says is that he is not god. well she knnows that sometimes false hope is worse than no hope

cheri7
Joined: Jun 2009
Posts: 4
Jul 1, 2009 06:35 pm cheri7 wrote:

Thanks Linda.  I am still fighting this stupid bronchits/sinus infection. Doesn't help when I need to be all there for others. My MIL's surgery is scheduled for July 7. She really doesn't want to do it. But is doing it for her boys. I have told her it is her body and to make the decision SHE wants. But she will do it anyway. They are worried (and I get it) about her going thru the pain of Cancer that she watched  her brother go thru (his was lung).  She goes in for Radioactive injcection of the nodes under right arm. I am trying to find out what this procedure is going to do to her to prepare her for what is coming. I am worried more about the lymph removal that the breast. The Doc said if it wasn't for her heart he would do it all as out patient. Yes I am a believer, the only one in this family so I do a lot of praying. And I have a lot of people praying too.  I am praying this surgery will not be so traumatic on her.  She is a negative person and is already complaining. But she would complain if she chose to do nothing and the cancer spread.  Why didn't you make me get the surgery? Now it is why ARE you making me do this. They can't win either way. Really sad. She is a nice woman other than this. Mother abandoned her and 2 bros when they were young. She never felt loved as she grew up in an orphanage. Anyway, my husband and I will be staying with her for a few days after her surgery. Any suggestions to help her will be helpful.  I will have my laptop.  She will have a drain after the lymph removal. I just hope none of the cells have spread. So far it looks good.  The Tumor is the size of flat, dried apricot and some swelling in lymph.

61linda
Joined: May 2009
Posts: 64
Jul 18, 2009 11:15 pm 61linda wrote:

Hi Cheri and tid. I was away for just over three weeks and got back this morning. Hope you got the information you needed to help manage post op. The Am Cancer Society has lots of great ideas and I hope you connected. This was a long time and I'm sure lots of things have happened in your families. My experience has been if the docs think things are looking bad, they won't say much one way or the other.
tid. I was very fortunate and didn't have to do chemo so I can't tell you what that was like. There are other threads on this site that have a lot of information and support. You will find no doc can guarantee anything. They can tell you percentages and sometimes what her chances are but every person responds uniquely so it's impossible to tell ahead of time how she will respond. Mostly this is educated guessing which is why you want a well educated doc and why the more you know the better decision you all can make. What did your Mom decide to do? If your Mom doesn't like and doesn't trust this doc, call somebody else although I don't think any doc can give her what she wants because there are no certainties. The bottom line is if your Mom is ready to let nature take it's course without fighting back, then all you and the medical system can do is help her through it by accepting that as her decision. That is really hard to do. Watching her go is harder still. It sounds like your Mom was quickly going from bad to worse and staying on top of her medical condition was tricky.
Cheri: How did your MIL do with the surgery? How are you managing with her complaints? There is no winning when no matter what you do, it's the wrong thing. For sure, she has plenty to complain about. The lymph node dissection from my armpit was the worst part for me and still is swollen. The radioactive injection was to help locate the sentinel node and the surgeon may also have injected some blue dye. The more nodes the surgeon takes out the harder it is post-op and also increases the risk of lymphedema down the road. Getting her to keep using her arm post-op and not lifting any weights until the doc gives his Ok is important. She needs to do the stretching exercises every day until she has regained normal range of motion and then continue to do them to maintain it. I started doing them in the shower when I was all warmed up. I found a good book about this in the library at my hospital and photocopied the exercises. I started massaging the scars as soon as I could tolerate touching myself and that has helped. I also did a lot of stroking the surface of the skin when the nerves started regrowing which caused a lot of burning pain. Some women experience itching at this time. I still use a little pillow under my armpit and another to keep the seatbelt off my chest when driving. It decreases the vibrations and I lost only 8 nodes. Also I use an ace wrap occasionally very lightly applied.There is nothing easy about any of this. My MIL grew up in an orpanage, too. She had some strange ways of doing things that drove her kids nuts but she and I had a lot in common and I loved her and miss her. She's been gone 4 years from heart disease.
Are you finally over that sinus infection and bronchitis? There was a bug like that going around that took nearly a month to clear. Please do what you can to take care of yourself, too.

daineldavid…
Joined: Oct 2009
Posts: 1
Oct 26, 2009 11:40 pm daineldavid wrote:
This Post has been removed by the Community.
lisa-e
Santa Cruz, CA
Joined: Jun 2008
Posts: 443
Oct 27, 2009 12:20 am lisa-e wrote:

Another pretty odd post i am reporting. Again, I am afraid to click on the links to dee what daneildavid is selling.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction
Diagnosis: 2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2-
Madalyn
Joined: Jul 2007
Posts: 768
Oct 27, 2009 11:13 am Madalyn wrote:

Reported also.  That is the strangest spam message I have ever seen.  Links looked like selling jewelry ... trying to hide it by talking about autism ... on a breast cancer board ... totally weird!


Diagnosis: 3/6/2006, IDC, 3cm, Stage IIa, Grade 2, 0/4 nodes, ER+/PR+, HER2-
allalone
Joined: Aug 2009
Posts: 51
Oct 28, 2009 07:27 pm allalone wrote:

tld33 wrote: her doc had her chart asked her why she hasnt been going to treatment for her breast cancer that was diagnosed 2 years ago.

You mean her doctor didn't refer her for treatment or follow up on her? Doesn't that make him negligent?  Just my opinion......

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