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Found out it could be vaginal cancer. White spots were found. No bleeding.


Funny, Mom sleeps good. Eats good. Very kind. Sweet. We have the most wonderful mother! Hate this is happening to such a beautiful woman in our lives. Seeing our mother with ALZ breaks our hearts. We are very loving to her. Understanding. Share in her faith. Honestly, she is absolutely a dear dear mother.


Some say go the palliative care route. PET scan and surgery, radiation etc will be too much.


Who’s gone through this? Anyone have good advice?

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NYtoFLAgirl Jul 2019
Thank you!,
could you be specific why?

im looking for good advice
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Despite Alz and spots what other issues?
What does oncologist say would be issues with no treatment vs treatment if she does have cancer?
I think there are too many unknowns, making it difficult to offer an opinion.
However, I wouid probably do the pet scan in order to make a better decision if it isn’t too difficult for her and if she is in fairly good shape otherwise.
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NYtoFLAgirl Jul 2019
My mother has ALZ. No other issues. We give her a pill in morning. Late afternoon and at 8. Helps keep her calm. Or she feels very agitated and not sure about her surroundings. With these meds she’s calm. Coherent.
shes very quiet. At the same time always says thank you. We shower mom she says “I love you” . “You are so sweet.”
shes always been like that!
otherwise sits cozy in her chair. We walk her holding onto her. Etc.
her doctor wants to do a PET scan says he can see if it spread. If it did we don’t want all this surgery done if it makes her worse. She appears to be doing pretty good right now. Never complains. Honestly she’s a gem. If they do surgery what about radiation. More meds?!
Guess this is questions we have to ask doctor more about. They just make decisions and we believe every word. I’m afraid for mom.
ALZ isn’t the quality of life we ever wished on mom! Hate this disease.
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Did you mom leave any living will in which she expressed what she wanted in situation like this? If not, you or whoever has POA will need to decide for her.

Talk with the surgeon.

Will it be an invasive surgery where she will be cut up and then sewn up. That will be a lot of pain.

Ask about the chances of infection which is very real. If it occurs, will it require more surgery? More pain.

Ask about recovery time. How long? How much discomfort?

Ask about radiation. It BURNS. How long? Yes, a lot of pain.

Ask what her quality of life will be after the treatment.

Ask yourself if you were in her shoes, at her age, would you go through with it, and for what purpose.

Then you can decide.
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NYtoFLAgirl Jul 2019
You are correct. We made decisions about the quality of her life with other issues. We’ve talked about this years ago. I think it’s the way the Doctors are presenting it that makes us feel a bit confused. But I know within the next few days we will make the right decision. I’ll keep you posted. Thank you so much for your honesty and concern!!
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To add to my previous post...

Honestly, truthfully, if I had to decide between dying of cancer and dying of Alz, I'd pick cancer any day. The end years of Alz are not something I want to go through, being practically bedridden, with mind already gone, pooping and peeing in diapers and needing people to wipe my behind, feeding me, possibly acting crazy, screaming incoherently, making the lives of my children hell.

I shudder...
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Countrymouse Jul 2019
With respect, that's an easy call to make when you're not facing either. God forbid you ever should.
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This is a cop-out, but what is wrong with "watchful waiting"?

I read and re-read your post, and I'm sitting here with a cross frown on my face. White spots were found? HOW? The doctor happened to be passing and thought he'd have a quick peep?

But let's assume that there were other symptoms bothering your mother, so there was an exam, so these suspect areas were seen, so the doctor has recommended a PET scan. What other investigations have been done? Are you satisfied that other, less alarming causes have been ruled out?

I'd ask the doctor to relieve any symptoms and then keep an eye on things. There is no point going looking for a tiger if you're not fully prepared to fight it.

This decision is fully yours, is it? How advanced your mother's Alzheimer's Disease is does matter. If she is still able to understand what her doctor is telling her, then you must involve her in the discussions. If she isn't, then you should aim to avoid any treatment that is likely to be worse than the disease. It's one thing to go through these ordeals when you understand what is happening and are looking ahead to recovery: the hope of recovery makes the treatment tolerable. But to have this done to you, with no understanding of why or what for, would be cruel and can't be justified unless a good outcome is certain.
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NYtoFLAgirl Jul 2019
I respect your comment. This was very helpful. I appreciate all you said.
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Remember that with ageing, there is no light at the end of the tunnel. There is no recovery to the past. Make the present as good as possible. Love xxx
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polarbear Jul 2019
Very true Margaret.
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If your mother can tolerate it well, I would probably get the scan to have additional information both for choosing treatment and for her palliative care. If the cancer is still localized, I might consider surgical removal of the cancer but I would not even consider putting an 86 year old with ALZ through chemo or radiation treatments. I would need to know there was a big health benefit before considering any surgery because of the possible impacts of the anesthetic on her cognitive functioning. Saving the body at the cost of losing the mind is not a good choice in my opinion.

My uncle died from pancreatic cancer that had spread to his liver and spine 7 weeks after diagnosis at age 66. After the initial stage 4 diagnosis my uncle researched pancreatic cancer for a couple of days, then announced the cancer was going to kill him and the treatments that would delay his death would also make him too ill to enjoy being alive. Although he didn't take chemo or radiation he did have a small operation to cut some nerves to reduce pain. He was able to really enjoy one last Thanksgiving with his family before engaging Hospice and then slipping into a comma a couple of weeks later.

My mother made me her POA after her brother's death and while my father was just entering the bad phase of his vascular dementia. I had a decade to have conversations with her about what she wanted before she began having any cognitive issues at all. Mom wanted to scale down medical treatment when her quality of life was compromised. She didn't want cancer treatments after 85, just palliative care to manage her pain. I asked about a ventilator when treating pneumonia. Mom told me that was acceptable if she was expected to have a full recovery to a good quality of life but if she already had other issues compromising her quality of life then she didn't want her life extended with a ventilator.

Mom is now 87 with MCI and no short term memory. After a fall last year she has limited mobility and must use a walker or a wheelchair. Since the fall and my father's death Mom has displayed some dementia symptoms at times. I have reluctantly acknowledged that Mom has entered that "reduced quality of life" she talked about. Medical decisions now have to be made to maintain her comfort as long as possible but not necessarily maintain her life as long as possible. It's a difficult bridge to cross.
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Let's back up.

Who found white spots? Where?

I'm guessing she had a pap smear? Have they done a colposcopy and biopsy?

Who suggested the PET scan?

What kind of meds is she on? Glad they keep her calm. Wondering if it's a med that can be temporarily increased during a procedure.

I wouldn't suggest chemo or radiation. But I think you may be getting ahead yourself.
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IF she had cancer would she opt for treatment if she were making the choice? If not then why bother to determine what cause is. Not sure what the white spots have to do with cancer as often a symptom of genital warts and cancer doesn't usually show as spots, but maybe they were found at some other investigation of symptoms. Maybe they could develop into cancer? Any way it all seems rather irrelevant, as the question is IF it turns out to be cancer does one put a LO with ALZ through the treatment that will make them feel awful and which they will not understand and will simply think someone is hurting them. So much depends on what Mum can understand and would want, personally I would refuse the PET and any further diagnosis or treatment. What will be will be, and very loved is not a reason to cause distress to an LO. - Purely a very personal opinion, you have to choose knowing Mum.
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NYtoFLAgirl Jul 2019
I respect your comment. And honestly all these comments are heart warming to me.
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It is so nice to hear that you and your mom get along so well, and that she is a sweetie! I have no definitive answer, tho my step father who is 90 has been prodded, tested and operated on too many times, he no longer has any quality of life. Now the doctors say "He has clogged arteries, lets operate"...No...he is hopping off the money train, last year alone Medicare paid 2.2 million dollars to medical professionals in his behalf. We had a family meeting, we all agreed, including him, no more!
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NYtoFLAgirl Jul 2019
These are good thoughts.
It is hard to decide. Her oncologist just said her results will be in Tuesday. And he wants an answer. Either do the Pet scan and surgery and remove what he sees around the personal area or decide Palliative care.
we are weighing all these questions I see here in Agingcare. We are praying that whatever decision made it is for the best for our dear mom. She’s raised 11 of us. We all deeply love her. She’s been a wonderful mother. Has always been kind and outstanding with the quality of love! It hurts us to see this happen at this stage in her life. But aging doesn’t always happen gracefully. But we will make her as comfortable as we can and love her right up to our last kiss on her cheek.
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I think I would want to know what will happen and how long will she remain symptom free if you do nothing. After watching my mom fade away I know she lived far too long with zero quality of life.
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Hi, I’m sorry you are going through this. I just went through this with my husband (78 years old) He had T cell Lymphoma which caused large bumps and one broke open which was a large sore. It effected his day to day because the large broke open one hurt and his leg hurt to walk which is all he does anymore. After talking to specialist we decided to try radiation to get rid of it. The cat scans were the worst part, he did good but it obviously scared him. He thankfully only got 8 radiation treatments. It hasn’t been a month yet but looks like it’s going down. Sore is still there but not the others that were there. He also has spots on his liver, spleen, lung, kidneys and a lymph nod. They wanted to do an MRI and I told them no way he could do that. I can’t say for sure but my thought now is I’m not doing anything about those spots. If it was me I would hope nobody put me through long bouts of radiation and chemo. It’s a horrible position to be in. I was fortunate to be able to talk to the specialists and decide what to do but it’s very stressful. I wish you the best as you decide what to do and as I was told, any decision you make will be the right one because you are doing the best you can.
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No treatment as it would be a very bad way to go, would be my advice as a nurse. Treatments for cancer kill quite often, and one must be strong to survive them. No, I would ask for palliative care consult. Is there pain? How was this condition found, as cannot imagine a pelvic done on a woman this age? Have Palliative care consult and consider hospice. There is no way to tell how quickly this will progress, and with some cancers, in truth they do NOT progress until something else kills the elder. That is true of most age-related prostate cancers, as well. I would not treat. We are all different but I would not test and I would not treat.
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NYtoFLAgirl Jul 2019
I respect your sincere comment. Especially being a nurse. We’ve been reading so many things these past few years. Wanting to be in the know. And have all the right questions for the doctors.
Yes we wish we discussed this kind of situation occurring with mom what would she want. We have been told our whole lives you have a healthy beautiful mother. I’m 60 now. Moms 86. And now our little mom facing this. NOT ALONE. We will never leave her. No nursing home all these years could beat the personal care mom receives at home. Doing our best!!!

thank you for your responses.
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I would go with Alva. My daughter is an RN too and had always said,no evasive treatment for My Mom. She had bladder cancer previously. She passed at 89. Thankfully we never had to make that decision.

I would not put her thru anything. They don't understand what is going on and it just frightens them. They become like children. If her symptoms worsen, then I would consider Hospice.
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AlvaDeer Jul 2019
And problem with so many treatments is that they cause more problems. Any vaginal radiation is going to cause scar tissue and problems in the pelvic area, could even cause problems with fistulas into the bladder from the fragile areas radiated in close proximity to the bladder. I think with most cancers of this type it would cause more problems than the cancer, which will likely be a slow grower and perhaps not the cause of her death at all. Someone else mentioned the anesthesia. Again a problem for the elderly as so many of us know. I just fear what she could be in for with treatment.
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The PET scan is looking for cancer.

Does it matter? Would she want to treat it? (I a currently treating for Lymphoma, and if my 90yo mother had cancer I would NOT be on board with putting her through this. It's not awful, it's pointless at some point. I am going to beat this and expect another 20+ years. I told my DH "when and if this comes back, I'm done. One and done. I will NOT put you or the kids or me through this.) I'm txing only because I'm only 63 and in good health and this is only stage 2.

PETscans do not hurt. Probably the ONLY cancer detector that didn't. MRI's and CT scans don't hurt either.

I would ask for palliative care if she is in pain, but no, I would be 100% opposed to treating at this stage of health and life.
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Riverdale Jul 2019
What does txing mean?
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11 kids. See, it takes a village to take care of one person with dementia. Seven sons, who brought more women into the family through marriage.
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NYtoFLAgirl Jul 2019
Crazy big family. But my brothers and their wives have been through quite a lot. My sister in laws are wonderful. They look after their moms too.
Us four girls look after Mom.
It was nice hearing comments from others..
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Many of us come to this decision for our parents. Do we assess and treat or do we just let them live out their lives in peace. Being wheeled around and trollied around and xrayed is potentially stressful even if it doesn't appear so. Going through assessment for disease (pet scan in this case) and treatment is horrible, even for a younger person. Given the age, I wouldn't put my mother through assessment and treatment unless there was a benefit. I can't see the benefit. What treatments could there possibly be? Radiation, surgery, chemo? These are horrendous experiences. On the other hand palliation means providing excellent comfort care and letting life unfold naturally with excellent management of any symptoms or discomforts. It is the most gentle and humane way to proceed in my opinion. I would defintiely get those palliation services involved to assess the situation rather than the assessment/ treatment route. I think weighing up all of the factors, her age, her Alz disease, that you adore her so much and don't want her to suffer - that palliative care services will be a decision that matches want you really want for her care. Just my thoughts but the decision is yours. That's what I would do. Remembers, the medical profession treats disease, that's all they are taking into consideration here... they are not looking at this from a holistic perspective.
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NYtoFLAgirl Jul 2019
I absolutely agree. You have written how I feel too. Thank you for this. It’s reassuring to know such kind people are in this unjust crazy life.
We don’t want to make any decision until the Doctor talks again to us next week.
We feel like you, we can’t put mom thru all that.
She has a strong faith. She has an incredible spirit. And we want to enjoy our mom until she falls asleep in death. As hard as that will be to see her do that. ALZ is a not so nice disease!!!
Nice thing though about mom
she smiles when she sees us all and tells us she loves us. We know she’s in there. 🙏🏻😉💗
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I think your jumping ahead of yourself a bit. You can't possibly make a choice between palliative care and treatment for cancer without knowing what your dealing with and it sounds to me that's what the PET scan is for. It isn't a painful or invasive test, I have had one of my head which is far more involved than it will be of her abdomen I'm pretty sure. That might be hard to explain to an Alzheimer patient but it sounds like she is sweet and cooperative enough to lay on the table while it moves into the tube, maybe close her eyes if she's nervous. You can probably even arrange to be in the room talking to her if you feel it will help and if it's too overwhelming for her you just don't do the scan and cross that bridge then. But don't get so far ahead of yourself here, one step at a time.
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NYtoFLAgirl Jul 2019
I appreciate your concern

with ALZ it’s hard to tell someone what to do if sometimes she doesn’t understand. Also mom does not like closed in places. And to go into something and she can’t see us or hear us she will be scared. I know my mom. Doctor won’t let us in there as we were told.
Will do our best Mam. We won’t make rash or rushed decisions.
You’re right. One step at a time.

Thank you
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I hope you will update us with decisions when able and tell us how your Mom is doing; many of us will be thinking about her. I think a lot of these are very slow growing and I agree with those below who suggest a wait and see. Without symptoms any sort of treatment involving chemos could make her very ill indeed, any with radiation is radiating already very very fragile tissues, and there can be problems they often do not warn you of, fistulas forming from breakdown and scar tissue that can open between the bladder and other organs. Can honestly be just awful. I am a cancer survivor, breast cancer, and at 76 I am 31 years out from original diagnosis. I so have utterly no fear of death, but I do fear a long slow tormenting slide, and I stopped mammograms at age 70. I do believe there are worse ways to go than cancer, as well (someone below mentioned this), and as a nurse I have seen some treatment options that have devastated people. It is to be understood that nurses see the admission of people who had bad outcomes, not those who survived; I own up to that. But I myself would not choose treatment. And if you do choose treatment be very clear that you want a full list of potential side effects of said treatments. Wish so much luck to you all and so impressed by the joy of the love you have for one another. Please update us.
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NYtoFLAgirl Jul 2019
Ohhhh. Thank you!!!!! I will. We will.
My sister Sarah is wonderful caring for mom. I’m there too.
Sarah is an absolute gem!
Nurses came to the house and commended her for her incredible care of our mother.

Thank you for your note
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My dad was diagnosed with a brain tumor when he had a brain MRI for a fall he'd taken where he'd broken a hip. We knew nothing about it at the time. He was SO terribly upset by the noise of the MRI, that we decided not to put him through another one, in spite of the doctors telling us we should do so in order to keep track of the tumor & to see if it was growing. Mind you, they would do NOTHING for him if the tumor was growing, so, what was the point in putting him through more MRI's? In your mom's case, you don't know WHAT, if anything, you're even dealing with and you're trying to make a decision without all the facts. I'd let her have the PET scan and THEN talk to the doctors about the results & what course of action should be taken next.

Best of luck.......I hope there is a good outcome for your sweet mom!
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NYtoFLAgirl Jul 2019
Thank you so kindly.

I’ll be honest, ALZ for our mom is awfully awfully sad.
She is a beautiful mother inside and out. For this to hit mom has been emotionally hard.
We appreciate the faith mom has and the strength she musters up thru all this.

thank you again.
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I would at least get the PET scan done. You would have more information than you do now. I would not do chemo or radiation therapy, the treatment would be too toxic for her body to handle. Depending on the results from the PET and if positive and at the beginning stage 1& 2 I would probably have the surgery done. In most cases a small local incision is performed but it might not be cancer. My mother at age 85 had surgery and did very well. I would consult with her doctor and see what he advices. Wait and see until you have all the facts. I was told by my mother's Gastroenterologist he was quit sure my mother had colon cancer after her colonoscopy. I was quite upset and in tears, but when the biopsy came back it was negative for cancer. This doctor was well respected by his patients and colleagues but he jumped to conclusions before the final result. Take one step at a time and go from there. Hope everything works out for your mother. I am glad she has such a caring family.
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Did the doctor do any biopsies of the white spots to determine if it is vaginal cancer?  Is the PET Scan to confirm the diagnosis of vaginal cancer or to determine whether the cancer has spread to her uterus, ovaries, bladder or abdominal organs?

You need to ask the technicians or someone from the department or company who will be doing the PET Scan, about the procedure.  Will the dye containing the radioactive tracers have to be swallowed, inhaled, or injected into a vein in the arm?  How long will your Mom have to sit in the waiting room prior to having the PET Scan while the dye "flows" to the vaginal area of the body?  Will the PET Scan be done in a building or in a portable lab on a semi-truck trailer? 

Since your Mom's possible cancer is located in her vagina, she most likely will have to lie very still as her entire body (at least to her thighs) is moved into the PET Scanner.  Will your Mom be given any sedation if she becomes restless or uncooperative?  Ask how the staff deals with someone who has Alzheimer's or dementia and whether they feel that the PET Scan can be completed properly without upsetting someone with Alzheimer's or dementia.

Just because your Mom is sweet at this time, does not mean that she will be sweet and cooperative when she is in a very strange and bewildering place with weird noises and sounds that make no sense to her impaired mind. 

When I had a PET Scan, I had to go in to a semi-truck trailer parked next to the hospital.  (Since we are a rural area, the MRI Scanner is also on a semi-truck trailer that is parked next to the hospital 2 or 3 times a month.)  A platform rose from ground level to the door of the semi-trailer and I had to step across a 2 inch opening between the platform and the truck.  It took 3 tries before the staff were able to get an IV inserted so that the radioactive tracer could be injected into a vein.  Then I had to wait 30+ minutes for the tracer to make its way to my thigh area as that was where the cyst/tumor?? was located.  The table that I had to lie on was quite narrow and I felt as though I was going to fall off (but then, I wore Size 3+ clothes at the time.)  Each time the table moved or the cylinder inside the PET Scanner moved, the semi-truck trailer rocked back and forth.  The noise was deafening and almost scary as the PET Scanner clicked and hummed and the bed jolted back and forth as it moved in and out of the tube.  It took 30+ minutes for the PET Scan to be completed.  (A PET Scanner inside a building will most likely not be as scary since the scanner is firmly secured to concrete and not steel bed of a semi-truck trailer.)

Talk to your Mom's Oncologist about the PET Scan and ask if there is another procedure or test that can be performed to evaluate your Mom's vaginal cancer that might not be so confining and still give the Oncologist the information he/she needs to determine whether your Mom has vaginal cancer or not.  You and the doctors need to have as much information as possible about the type and extent of the cancer before any decisions regarding treatment or non-treatment, i.e. palliative care, can be made.
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NYtoFLAgirl Jul 2019
DeeAnna,
its getting late.
I want to respond to your note.
You said so much and so helpful!
I will be back. To respond again.
Good night.
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I have not read the other replies yet. My post is based on what I would do if it were my Mum. I am financial POA for Mum and her healthcare representative (Medical POA). Mum is 85 and we have not had to spring the POA's yet.

My Mum would not consent to treatment at her age. She feels she has had a good life and would refuse any surgery, chemo etc. So if Mum had indication of cancer in any part of her body we would only monitor it. Once it metastasized she would go onto Palliative care.

I learned this week that my mil (I have many, long story), who is I believe 70, has had her endometrial cancer come back. She has had two surgeries in the past with Chemo etc. This time she has been told she has months, not years. It first showed up when she had a Pap, as spots in her Vagina. I am heart broken.

It has been about 5 years since her diagnosis and two surgeries, two rounds of Chemo, took a lot out of her. During the surgery or immediately post op last year she had a stroke. She was in her 60's, I cannot imagine a woman in her 80's going through all of that, add in ALZ and I cannot image a good outcome.

My step dad who had dementia (I do not know what type), died of cancer last November. We did not know he had it and by the time it was found it had metastasized. The doctor's wanted to do biopsies, Mum asked why, as we already knew there was not hope. They wanted the info for research purposes. Mum only allowed the mukps that appeared at the surface of his skin to be biopsied.

I know it may sound harsh, but your Mum will die of something sooner than later. You mention your faith, talk to your faith leader, talk to the doctors and be at peace with your decision.
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My mom had cancer when she was young. Her treatment plan included surgery, radiation and chemo.

She made it through surgery and a difficult recovery. The radiation was emotionally stressful but turned out to be otherwise fine.

The chemo, however, was so terrible that I would never want to put anyone through that, ever, if I was making their medical decisions. (Her oncologist had recommended that she not take chemo, but she wanted the most aggressive approach).

I would find competent oncologist(s) and ask for recommendations. You may want a second opinion - or even a seventh opinion. Every cancer and every patient is different. Make the most informed choice you can based on her unique health circumstance.
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Hello!
Hope you are all doing well! Those that responded to my last question I just wanted to give you an update.

Challenges in life, distress, aging, mental health things, emotional stress, family, loss of a loved one.... we all need support and comfort during those times.
Thank you for your support.
My mother has been doing well. She does have cancer in her personal area, non aggressive but evenso it’s there and hasn’t spread.
We have several very kind nurses coming during the week to check on her. We chose not to do Pet Scan etc etc. Doctors have cooperated with us and we are grateful for their help as well.
Mom is very cooperative, kind, sweet, and besides very quiet which comes with the territory, she still shows us signs that she loves us and we show it back.
We are grateful for the years behind us we had with our dear mother and are grateful for the time now.
We had a very exceptional father whom we loved very much, and set a good example in our lives of love and family and our mom was the same! It’s been our privilege to give back to mom what she did for all of us.
So far so good.
Thank you for your comforting words and I appreciate that this site was available to ask questions that helped us along.

I found several other publications very helpful so have quite a lot to be thankful for.

Peace out to all.
Sincerely,

Colette Renee Newman.
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MYtoFLAgirl - thanks for the update. May your mother's sweet and kind nature stays with her till the end.
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NYtoFLAgirl Aug 2019
Thank you!!
very kind of you
Since my sister is taking a well deserved break and I’m here with our mother she’s been doing pretty good. One nurse Donna came and was feeling pretty good with how she’s doing. Grateful Hospice checks up on mom. Today she’s eating spaghetti her fav.
Im grateful that mom is good so far. My sister established a good routine over the years and she’s a wonderful caregiver. An award winning sister!! I have two others I feel the same about. They come often and appreciate that!
have a great week polar bear!
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