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I have a question but first a big thank you to all you wonderful people who have responded with caring and thoughtful answers andsuggestions to my questions over the past several years.


My wife of 55 years passed away on Dec. 6th of last year after a 10 year struggle with Alzheimer's Disease. I was able to keep her with me until she passed away in our home and I was by her side and holding her hand until the very end. She was on hospice the last month of her life and they were very caring and helpful. I will miss her forever and am in grief counseling with a weekly Zoom meeting of a dozen or more people, with a weekly social worker visit provided by the hospice and a chaplain also provided by the hospice organization for the next full year. They are so important to me at this time.


But now my question. My wife passed away on Dec. 6th 2021. On Christmas Eve my daughter (40 years old with a 5 year old daughter and twin 17 month old boys) came down with Covid. On Sunday she went into the hospital and on Tuesday she was declared over with the Covid but they said they found something else going on in her body. After a week of tests they said she had Breast cancer and after more tests they said it was (and I don't understand this) Estrogen positive, Progesterone positive HER 2 negative stage 4 metastatic breast cancer.
I don't understand this information but her husband seems to be able to understand what it means. From what I can gather it does not seem to have a positive outcome.


I am 83 and want to live as long as possible so that I can help her and the family in anyway that I can but I am not sure of what to do. I want to be strong for them and live as long as possible but reality gets in the way. I live in a small ADU house in the back of their home so I get to take care of the boys on a daily basis and I see them daily. My daughter is very careful of me since I am the only family member who has not come down with Covid and at my age it may be a problem.


My question is: has anyone experienced this type of cancer? What are the daily symptoms and how can I help? The outcome does not look good. My wife used to say almost daily that she "was so afraid, so scared". I knew what she meant but after awhile I am not sure she knew what she meant. Now my daughter says the same things and I know what she means especially when she looks at her daughter and the twins.


Taking care of my wife was something that I could do and I think I did it well but I don't know how to help my daughter. I can take care of the boys on a regular basis and I am glad to do this. My granddaughter is in kindergarten so I don't have as much interaction with her. With my wife I was hands-on but not so with my daughter. I want to be there for her and her family but how?


Has anyone confronted a situation like this and how did you handle it? I need help and this website has helped me so much in the past and I hope it will be there for me now.


And what is this type of cancer? I knew all about Alzheimer's but I am lost when it comes to breast cancer.


Thank you all. I can't tell you enough how much I appreciated how you helped my wife and I cope with Alzheimer's and I hope you can help me to cope with my daughter's breast cancer and to be there for my daughter and her family.


Thank you,
Ed

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You can look up all these genetic markers for the cancer, Pha, but the basic problem is the last words which are that this is stage IV and that it is metastasized. Stage IV cancer means basically that it is not "curable" and that you are likely to die of cancer as your diagnosis unless you walk in front of a car or truck before that. Metastasized means spread. You do not apparently know where it has spread to. Breast cancer usually spreads to the brain or the bones or the lungs, but that doesn't rule out other areas. Can go to the liver. Tests called PET scans will basically tell them what portions of the body "light up" and that is where they will test for spread. After that it is up to an oncology and a radiation team to do whack-a-mole, treating the problems that exist and treating new problems when they come up.
You should use your computer to look up things. 1) Metastasized cancer 2)Stage IV cancer of the breast. Anything else you want. The Her2 and estrogen + or - less important to look up. They have genetic consequences for your daughter's children more than anything else.
This is going now to be a family in shock and afraid. That said, things will go a day at a time, and your job is NOT to tell your daughter she will be fine (she may not be, so that would be a lie). Or that "prayer" or burning sage or coffee enemas might cure her (they will not though dependent on her feelings they may be a comfort). And NOT to tell her that she can cure herself. That puts an added burden on someone who got this illness for no reason and who, the hope is, MDs will keep alive for many many more years.
Your daughter will be given treatment options. They will include or MIGHT include mastectomy or lumpectomy with radiation, chemotherapy, radiation therapy. All are weakening and tough to get through. Your help with cooking, driving, helping with the kids will be a huge help.
Allow your daughter to give HER OWN feelings. If she wants to plan a funeral with photos and music, let her, telling her you hope it is 70 years in the future. If she wants to deny that stage IV could take her life, let her. That is, let her be or say or do WHATEVER SHE WANTS. Tell her you are sorry when she is sad, tell her you love her, tell her to let you know what you can do to help. Her moods will be swinging every which way for a while.
I had stage II cancer (spread to two lymph nodes) 35 years ago. Fought it with mastectomy and chemo. Am still alive at 80 with no recurrance. Stage IV is tougher but there are new treatments ALL THE TIME every day, very targeted and can keep people alive for many many many years.
Just basically be there for her. Let he handle this with her own family and offer help. I am so dreadfully sorry. As a nurse I know this is tough. And as a survivor.
Take this one day at a time and make GOOGLE your best friend. Look up everything. Don't share info with her unless she wants it. I was overwhelmed with too much information at first.
Basically, be a listening post. Cook. Clean. Watch the kids. Be certain she plans GOOD and happy things to do along with all the awful things she will have on her place. Even if they are plans for times ahead like Paris in 2030.
This will be a hard year for you all. Tell her you want to share what she wants to share and are strong enough to hear it. Let her be honest with you. Tell her you are fine if she does NOT want to share anything.
She's the boss basically. I am glad she has such a good man at her side and I am so very sorry for your loss of your wife.
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Dear ed
i don’t have much advice I’m afraid but I think your daughter knowing her dad is such a wonderful man and is there to support her, her husband and kids will lift her. I would start with a website specialising in breast cancer - over here in the uk we have an organisation called macmillan nurses who would give lots of advice maybe you have something similar in the us
I send your daughter all the best of luck and to you a huge hug
Much love to you Ed and to your family xxx
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When my parents were 74 and 79, my sister moved in temporarily with then a 1-year-old as she was going through breast cancer. Even 10 years ago, there was only a limited amount of physical energy they could give the kid, and it only worked because my other sister's family plus her then-husband really helped out with the kid.

You're about the age of my mom now. She's healthy, but no way could she babysit 17-month-olds probably even then, and certainly not now.
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I'm so very sorry for the diagnosis of stage IV metastasized breast cancer your daughter has received. What a blow for the whole family.

I think the best thing you can do to help her is to ASK her what she needs from you and then do it, as much as you're physically able to, for as long as possible. Without putting yourself at risk as an 83 year old senior. You may be able to pay for some in-home services for her instead; that may help her w/o putting you to the task. And other times, your mere love, support and help with the children will be enough.

I think Alvadeer has given you the info you need from a medical standpoint, so that's a good thing coming from a retired nurse who's been down the breast cancer road herself.

My deepest condolences for all you've been through with the loss of your dear wife last year and now this terrible news with your daughter. May God give you the strength & the courage to help your loved ones as you all travel this journey together.
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Don't burden yourself by getting into the weeds about the particulars of the diagnosis. As Alva said, metastatic means it has spread, and Stage IV is the bad version. (It's been in her body for a while.)

Focus on the family stuff. Be a sympathetic ear for both your daughter and her husband, as he's going to need support, too. He's now a caregiver as you were, and he needs a safe place to fall apart if he needs to.

Work on making memories for those kids. If you have a cell phone, take pictures of their mama, put together photo albums of her when she was growing up, and write down memories you have of her growing up. Those kids will want to know about her, and they'll want to know about you, too, so write down memories of your own childhood, too. It doesn't have to be great writing -- anecdotes are fine -- but preserve that history for them.

Keep close to those kids. Help their folks as much as you can as they ask. Do what you can do, but also don't neglect yourself and your grief. Keep going to those groups.
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I'm so sorry to learn of your daughter's cancer diagnosis. 
Alva has offered good insights, especially as to the contributing factors.   I would unfortunately have to agree that Stage IV is an advanced stage.   

Remembering what my father, my sister's friends and I did for her after her D/x also of advanced cancer, perhaps these suggestions would help:

1.   If she elects to get chemo, it could just wear her down.   And she may lose her appetite, or find it so severely limited that it's hard to find food she can or wants to eat.

2.  If eating becomes an issue, we found that juices (w/o all the additives) helped; at one point that was all that she could tolerate.   Tastes can vary during chemo.

3.  I hate to relate this, but it's helpful to know.  If the cancer metastasizes to her brain, other aspects of her body could be affected.

     a.  Brain:  some confusion may result.  Be prepared for you or her husband to take over financial management, etc. before the cancer reaches that stage.   Take responsibility for as much as the family can to redirect attention on household and financial issues so she doesn't have to be concerned about them.

     b.   Spinal cord:   this metastasis caused "drop foot", a condition in which control is lost over a foot, and it can turn outward.    My sister was fitted with a type of brace, but it was uncomfortable, awkward to use, and that situation was very, very emotional, especially since she had been a runner.

     c.    Spinal cord:   she had trouble standing, had to crawl to the door to let the dogs out.  That's when I moved in with her.    I had someone help bring down a mattress and slept on it next to the large couch which she then used for a bed.  It was easier to get in and out of than a bed.   Eliminate as much as you can that requires movement up or down stairs, or in areas where there are no handholds or grab bars.  If you do install them, use only a licensed carpenter.  

      d.    Spinal cord:   You can consider what needs to be done in the house in terms of moving around, create a bedroom on the first floor, close to a bathroom, and avoid climbing stairs.  Get some no rinse shampoo and soap so she can still feel clean, but avoid hazards like showers and bathtub (especially a bathtub!)

      e.    Warmth:   the body can't always maintain heat, so have plenty of warm blankets and heavy sweaters available.   Nightgowns are easier to get in and out of than pajamas, and better for midnight overnight bathroom visits.  Get heavy or hunting socks for her feet.

4.    If she has chemo, be aware of a condition that in 2003 was known as "bacterial showers".   It occurs after chemo infusion, when the chemo nurse uses (sterile?) water to clean the port (a device that's inserted in the chest area or thereabouts to hold the chemo line as it runs into the body.   It's cleaned afterward.  

My sister, who was a nurse, explained that if a tiny bit of  something nonsterile gets into the line, it can cause a bacterial shower.  Hers happened w/i 10 minutes or so after chemo.   She shook violently, as if a seizure was taking place, and she became very, very cold.

She was still inside the Infusion Center, so I rushed her back to the Chemo section and she was treated by a chemo nurse, who if I remember correctly gave her Tylenol.   This isn't something that anyone but a chemo medical person should handle though.  

And your daughter should never be alone for several hours after chemo, not just b/c of the potential shower, but b/c it can be so draining.

5.     Her husband should get her affairs in order.   My attorney came to the hospital after initially meeting with my father, sister and I to discuss end of life documents.   She put a rush on them, came back 2 days later and my sister signed in the hospital.  

Out of space.
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AlvaDeer Jan 2022
Such marvelous info, GA, but also the OP should understand that even when cancer mets to the same organ in some people (say the brain) the results can vary tremendously. 8 years ago the cancer of a friend went to brain. Since she has had four bouts of direct radiation to the area and she has zero side effects being lucky in where the tumors have located. Still works in animal rescue full time, has four dogs of her own, and still going. Each case is like a thumbprint, entirely unique unto itself.
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6.   Peace.     As my sister's cancer progressed, she had trouble sleeping, as did I.   We played soothing music on CDs.   Rhythmic music, such as waves lapping on a shore, calmed us both.    This is also a time when someone with cancer shouldn't be alone.

7.  Socialization: 

      a.    For your daughter, it should be limited to family first, and friends on a secondary basis, but ONLY if she feels up to visitors.   And the visits should be short.   My sister was  a Big Sister, and when one of the young women with whom she worked mustered out of her AF position, she wanted to bring her young daughters and visit my sister, which she did.

She had no idea that cancer patients can have very limited stamina, stayed for about 1.5 hours, and was unaware that this totally exhausted my sister.  
 
      b.   For yours and her family:   It certainly will help you and other family members to keep a balanced lifestyle, remain strong and supportive, and socialization can help.    I found 2 resources:

            i.  Gilda's Club, but it can be overwhelming b/c you would be with many others at various stages of cancer.   I found it supportive but couldn't handle being with so many people who were battling cancer.  I just couldn't get through a meeting w/o crying.

            ii.    Infusion Centers (where chemo and rads are prescribed and carried out):    My sister's offered a few classes, including pottery and colored pencil art, for families and patients.   I took the colored pencil class, a very formal, small get together of others who sketched.  It was very worthwhile, calming, and soothing to spend time just coloring our art work, while occasionally looking out to see a pond, ducks and geese waddling around, and lovely scenery.

8.     Data sources:   CURE magazine; my sister and I both subscribed to it.   It includes a range of article relating to cancer, from new medicines, various gene combinations (way beyond me), families and how they coped.   The family articles were the most helpful.

It's available online and in paper.   And it's free to patients and their families.

The website:  https://www.curetoday.com/

Hard copy magazine is IMHO the best way to read it, not only to highlight important sections, but also b/c you can read a bit, put the magazine down, and continue later.   Online reading isn't as easy.  Nor is the subject matter easy to read.
https://www.curetoday.com/publications

9.   Equipment:   at some point you may need a walker and oxygen equipment, which can be ordered through the oncology doctor.    All the adults in the family could learn how to use the equipment so they can rely on it if it becomes necessary.


If I can think of anything else, I'll post again.  In the meantime, I hope this helps, and wish you and your family all the peace and support available to you during this challenging time.
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AlvaDeer Jan 2022
Facebook has wonderful support groups as well, and those gals know all the answers. They are wonderful support. I agree with the response of Garden Artist in that group therapy and meetings didn't work for me. I was a nurse and just took that role on quickly or felt it put on me. I was better sitting weeding in the garden and imagining every weed I yank out by the roots as a bad cell, hee hee.
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I’ve read all the responses, which are very very helpful but also fairly depressing. To try something just a bit more cheerful, my mother had breast cancer which also metastasised. She had treatment, and it went into remission for 10 years. She said that those were some of the best years of her life.

Try to help make this time good for your daughter. Knowing that the end may come can help us to appreciate the small good things that somehow manage to crop up most days.

Love and best wishes to you all, Margaret
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Ed, I’m just chiming in to say what a huge blessing you were to your wife and now are to your daughter and grandchildren. They all benefit greatly from your love and care. Simply be available as you can, offer to help with what you can, take care of yourself, and enjoy the time with your family. I wish you all the best
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I’m so sorry for your loss of your beloved wife. As to your daughters diagnosis, there has been so many advances in cancer treatment the last several years, including the one your daughter is diagnosed with. I used to work in oncology and I lost my husband to pancreatic ca that had metastasized to 4 or 5 areas when he got his initial diagnosis. He went fast, only lived 3 months. But as I said, todays treatments are so much more in tune with specific types of ca, and help people to live longer lives with some quality.
Many blessings to you and your family. Please remember to take care of yourself!!!! Liz
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Hi!
I'm so sorry to hear about the loss of your wife and now your daughter's cancer diagnosis. You sound like such a caring individual, my heart goes out to you.

My dad was diagnosed with pancreatic cancer in fall of 2020. It's one of the most agressive cancers with a low survivability rate. A year and a half later he's still alive and with a great attitude.

What I can recommend is trying to get the best treatment possible. We live in Orange County, CA. We found out Scripps in San Diego is best for treating tumor cancers out of all of southern California. So even if it's a distance for your family, your daughter may want to get an evaluation there.

My dad when through a round of chemo then went into remission for 9 months and really enjoyed that time. The cancer then came back and he's been going through more chemo. Fingers cross it's looking hopeful that this round is ending soon.

If your daughter ends up going through chemo, have her ask about putting in a port. It's like an implant where the doctors can always draw blood from and insert the chemo drugs without having to stick the patients with a needle everytime. My dad says it's been a life saver because he would otherwise be constantly stuck with needles.

I have a lot of tips for getting through chemo so feel free to PM me or post again if that's what the course of treatment is.

I would suggest trying to keep her spirits up. Same advice goes for her husband. My mom needed just as much cheering up if not more so than my dad. Cancer can be tough on the spouse too. Try to stay positive even when it's difficult. My grandma used to say the power of positive thinking is strong.

Good luck and keep us posted.
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Like the others here, I extend my sympathies on what you've gone through, and what you're going through now. Maybe, in addition to others' sugestions, you could contact the American Cancer Society, and see if they have other suggestions and/or information for you. They also might have support groups, I'm not sure. It's wonderful that you can be such a hands-on grandpa. Like the others, I'm sending good wishes your way.
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DISCLAIMER: I am not a doctor but a breast cancer survivor.

I’m so sorry for the loss of your wife and your daughter’s diagnosis. As I write this, I’m actually sitting at UNC Chapel Hill hospital waiting to see my chemo oncologist for my 6 month checkup following breast cancer in my left breast. I am very lucky as she’s a world-renown doctor that focuses on breast cancer at the Lineberger cancer center.

I had the same type of cancer except I was stage 2; specifically invasive ductal carcinoma. This means cancer cells had breached the milk duct wall and was in my lymph nodes. As for the designations, estrogen/ progesterone positive indicates the cancer feeds off these hormones in the body. HER2 is a protein that is part of regular breast tissue and impacts the rate at which breast cells grow. Negative is better in the grand scheme based on my understanding.

I had a lumpectomy followed by 4 rounds of chemotherapy cyclophosphamide (CYTOXAN), DOCEtaxel (TAXOTERE) and finally 33 rounds of radiation. I lost my hair, appetite and was very fatigued by my 3 round of chemo. I had nausea but only a few bouts of vomiting. Radiation was brutal. The skin was burned off towards the end of treatment and was very painful. Don’t let this scare you. Everyone’s treatment protocol is different.

As a caregiver for my father that had lung cancer before my diagnosis, I say ask your daughter and son-in-law what works best for them in her care and support for the family. I know as her father, you’ll want to do everything you can but you have to also think of your health. You were caregiver to your wife for 10 years and to take on another major role may not be best.

Reading the responses from others, they have great suggestions and mention resources I used. I don’t know if people connect outside of this forum, but I’d be willing to.

My prayers are with you, your daughter and her family.
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So sorry for the loss of your wife and your daughter's diagnosis.

Alva is a nurse so she pretty much told you how it is. Not sure what Estrogen and Progesterone positive means but I do know your daughters age is a problem because her body still produces Estrogen. My sister passed in 1996 from breast cancer at 43. She didn't have lump she had a mass. She described it as not being there one day and the next it was there. The Doctor said that's exactly how that type of cancer is. Estrogen feeds tumors my sister was told. My sisters was aggressive. The breast was removed. She had an experimental treatment thru John Hopkins for 8 months. She could not work because the chemo made her sick. She had a five yr old my Mom went down to care for. My sister went back to work in July. September starting having pains her PCP felt were probably from chemo treatments. Oct she saw her oncologist, who told her any pain should have been reported to him. Tests found the cancer was in her back so she was put back in the hospital to start treatment. My sister passed the next Tuesday. The cancer had gone to her brain.

Now, I gave you the worst case scenario and so should her doctors. Treatments have changed in the last 26 years. Faith and being strong willed have gotten people thru the worst things.

I agree taking care of 2- 17 month old toddlers is not something you are going to be able to do on a constant basis. Your daughter's husband has some decisions to make. He may need to take family leave. Or break up the leave to so many a day. He may need to place the twins in Daycare. Maybe you can help financially to help ease the financial burden. Maybe help pay for an aide so many hrs a day.

While talking to Hospice about the grieve of your wife, talk about your daughter too.
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I am so sorry for the loss of your wife and recommend grief counseling to you. Any cancer is not good to have and being each persons cancer affects them differently I would encourage you to speak to your daughter to first better understand her cancer, what is going to be the plan from her doctors and expected outcome. As well what you can do to support the family. You are a strong man and I believe you will be strategic in support of not only your daughter but her husband and your grandchildren. You are there for a reason and I will pray for all of you for strength. It won’t be easy but is possible. I just went thru this breast cancer with my sister 80 years old and is doing very well two years later.
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I recently went through breast cancer that had not metastasized I was very fortunate. I found the website breastcancer.org very helpful. You will find all sorts of information there. But your best source for information is your daughter.

This is also a great resource
https://www.cancer.org/cancer/breast-cancer/understanding-a-breast-cancer-diagnosis/breast-cancer-hormone-receptor-status.html
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phaT1paTch: I am so sorry for the loss of your dear wife. I am also sorry to hear that your daughter has breast cancer. My cousin just underwent breast reconstruction surgery after having bilateral mastectomies last October. She is a woman of strong faith. Arm yourself with knowledge from some of the many breast cancer sites available online Prayers sent to your daughter and also to you, Ed.
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Cancer care for your daughter will depend on the types of treatment she receives.

Surgery - usual recovery issues of needing help while that side heals and lots of rest.

Chemotherapy - meals, help with housework, lots of rest since she will feel sick and very weak.

Immunotherapy - will probably need lots of rest while her body "learns to kill" the cancer from treatments that teach her body that the cancer is the enemy.

Radiation - lots of rest but not usually feeling sick.

Ask her and her husband how you can be of help.
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