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Topic: Share Your Caregiving Story

Forum: Caring for Someone with Stage 4 or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Nov 12, 2015 11:41AM - edited Nov 12, 2015 11:43AM by Moderators

Moderators wrote:

November is Caregiver Awareness Month and we thought it'd be a great time to thank the members of our Community (and our lives!) for the help they provide while assisting their loved ones in navigating a breast cancer diagnosis. Please share with us your story! We'd love to share it on our site, on the Member Stories: Caregivers pages. Please feel free to share here or send us a PM with a photo we can use!

If you've been diagnosed with breast cancer, please weigh in with your thoughts on things such as:

  • What do you want to hear from your caregivers?
  • What do you need from your caregiver?
  • What kind of tips do you have for them?
  • What has having a caregiver done for you?

On the flip side, caregivers:

  • What do you recommend to other caregivers?
  • What challenges have you faced?
  • What has being a caregiver done for you?

We welcome any and all thoughts on this topic. Let's share our appreciation for the loved ones that help us through!

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Jan 13, 2016 05:08PM Popcorn23 wrote:

my mom was diagnosed with stage 4 breast cancer to her lymph node brain liver and bones. This was back in April 2014 she was 43 she is now 44. She got blood clots from her port and was in the hospital for two weeks in May of 2014 then she had two different chemos and her cancer shrank and her bone cancer went away then she had radiation on her brain and she got rid of the two brain tumors then in the beginning of 2015 she went on horomone therapy and it didn't work all her cancer came back accept the brain he put her back on chemo pills and in august she had a small stroke (t.i.a) caused by a tiny hole in her heart and a blood clot went through to her brain then the chemo pills caused her cancer to become stable then in December 2015 the xeloda stopped working and her onc put her on vinorelbine iv chemo she has had a new picc line put in and after 2 rounds she has gotten sepsis and is recovering in the hospital. It just one thing after another and I just feel empty her husband is to scared to take care of her so at 23 I am my mothers caregiver I am not around any family or friends and have no one to vent to and she often takes her anger out on me I know she doesn't mean it she has 7 kids and a step son her kids range in ages from 5 to 24 and five of them are under 1. It was so unexpected she went to the dr for arm pain and came back with stage 4 cancer .in the pastel most 2 yeas I have watched my strong young mom deminesh to being bed ridden And in and out of sleep. I know she is scared and so am I why does someone who has so much to live for get this horrible disease without even a chance.

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Jan 13, 2016 05:26PM MusicLover wrote:

Popcorn, I am so sorry for al that your family is going through, you are right this is a horrible disease. I can't tell how young your siblings are because your post is missing a digit but I hope that you can organize them to help you as much as possible. I am certain that your mom appreciates you immensely and is frustrated that she can not be the mom that she wanted to be because of this awful disease.

As per PET scan, 3 or 4 nodules in the right breast, 2 of which were actually in the middle of my chest, the other 2 were side by side in the breast. Also DCIS in the left breast. Dx 9/23/2013, IDC, Right, 2cm, Stage IV, Grade 2, 1/0 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 10/9/2013 Femara (letrozole)
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Jan 13, 2016 07:36PM Moderators wrote:

Popcorn,

Thank you for sharing your story here. We're so sorry for what your family is going through, You'll all be in our thoughts, please come here for support any time you need it.

The Mods

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Feb 13, 2016 07:22AM treadingwater wrote:

My mother was just recently diagnosed (Feb 8) with stage IV mets to bone. Her initial diagnosis of Invasive Lobular Carcinoma was almost exactly 5 years ago. She had a top breast cancer doc who suggested she have a mastectomy on the right side. Subsequently, some lymph nodes were removed to be sure the cancer had not spread. All the lymph nodes came back clean. My mother was told she would not have to undergo chemo or radiation as the cancer was "gone". Her only long-term treatment related to the ILC was Arimidex. My mother has had joint pain since taking the Arimidex. Fast forward 5 years. My mother noticed recently she was having some issues urinating and micro study showed hematuria. Her urologist wanted her to have a CT as he was concerned she may have some kidney or bladder stones. And BAM!! White spots light up all over her bones of the CT. After a panicked call that night at home from her urologist, my mother went to have a full body CT, bone scan, and bone biopsy. Feb 8 2016 the Doc confirmed mets to bone - right hip, pelvis, cervical/thoracic/lumbar spine, skull, ribs, breastbone, and right femur as well as to some deep lymph nodes on the right side axilla. The good news is the lungs, liver, and brain look clear. So the plan of action is to take Femara and Ibrance and see from there.

So I am a RN and I am not naive to know what these reports mean. When I see the word "extensive" throughout the reports its not good. The Doc told us that Ibrance is not chemotherapy and that my mother should not lose her hair, which she is very concerned about. Then the Doc wants to make sure she signs up for the "chemo class" and I see when looking up side effects for Ibrance that hair thinning and loss is listed. So now I'm slightly confused. To add insult to injury and allow me to vent, but how in the world would someone who does not have insurance be able to cover a medication that is $21,800 a month??!!! Luckily my mother has insurance. I do not know how Big Pharma can sleep at night.

And to make this a little more stressful/complicated, I am a caregiver to a very close family friend who is progressing quickly with bulbar ALS.

These are all such terrible diseases. I'm only 37 and an only child. I lost my father in 2010. My mother still has both per parents alive and kicking strong. I can't stress enough that life is not fair. So all the projects and ideas I have for my loved one with ALS for her family before she leaves this world, will also be done for me with my mother. The difficult conversations about death and final plans/wishes that I have all the time with my ALS buddy will also need to be done with my mother as well. Just different layers of sadness. . . .and anger.

Thanks for reading my rambling novel here. Had to vent. I put the soapbox away.


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Feb 13, 2016 01:51PM Moderators wrote:

Treadingwater-

Thank you so much for sharing your story. We're so sorry for your mother's diagnosis, and for the pain and anger and sadness. It is so very difficult, and we're keeping you and your family in our thoughts.

The Mods

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Feb 20, 2016 09:10PM PatrickG wrote:

My wife was diagnosed STAGE IV in September of last year. It has been a wild ride getting to where we are, at this time she is stable no progression n the disease. She is strong so very strong. I strive to be the best I can be easy really I love her she loves me and there is nothing that we would not do for one another. My main struggle is trying not to think of the future.

For me the future was always so far away I still have 12 years to retirement and always thought of us going off and doing all that we wanted to do. We have been together for 16 amazing wonderful years and I want so much more. So now that we were getting closer to that time and starting to make those plans this hits us.ILC IDC METS to bones(extensive and systemic). Those terms kind of make thinking of the future very hard. I never want to be without her, she is my life. We have three beautiful daughters that each have angels wings in my eyes, as well as a grandson and my oldest is expecting another(so cool).

I have heard all the sayings take it one day at a time live in the moment and we do but it's always in the back of my mind what next. For her I will tackle what's next with her for her but I wish we did not have to. Childish I know to say I wish as if those could make it go away.

I am proud of her the grace and stoicism she has displayed at being given this kind of diagnosis is nothing short of sainthood. She has moment when she slips she is human but still an angel my angel sent from God to keep this lowly guy filled with love.

I think you have an idea how much we love each other and how we will fight to stay together

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Oct 22, 2017 11:31AM Billwolf wrote:

I got back with my old flame in November 2016. I let my home forclose and moved in with her in January. We were so in love, and happy to be happy again.

This all changed in March with her stage 4 diagnosis. At that time, she warned me that she will be very hard to get along with, and that the chemo will make her crazy. She assured me that no matter what happens, that she will always love me.

Well, I had taken a lower paying job in order to be available for her and her appointments. She has not worked since the diagnosis. September came, and so did the bills . We were living beyond our means due to the lack of income.

I may also add that there are meds involved, oxycodone and alcohol. She was getting prescriptions from another network than her oncologist. My fiancé has a history with both opioids and alcohol. She started the oxy's before chemo, it was noticeable to me.

She was becoming angry and distant. The Oncologist would not start treatment until she was off of the oxy's. She lied the whole while, every time we went to the Oncologist , she lied.

September 15, she went into a rage, throwing me out of the house and her life. No contact, she has shut me down. The story she tells is that I have taken advantage of her and spent all of the money. Before she had a chance to stop me before dropping me as power of attorney, I notified the social worker and Oncologist about the oxycodone and alcohol.

I absolutely love the girl that is in there, somewhere. I am heartbroken as her family is taking her ridiculous story

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Nov 5, 2017 11:40AM - edited Nov 5, 2017 11:41AM by SWallace

My Mom was diagnosed with Stage IV breast cancer Mets to the bone in July 2017. She will be 85 on November 30. She has had mammograms and bone density tests every year with all coming back clean. What is the point of these tests if they are not reliable? It makes me so angry! I am an only child and her primary caregiver. A year ago she was doing well enough that we were attending concerts, plays, and traveling. Now she is mostly bedridden. She takes a couple of steps to use the bedside commode, or to a chair, but cannot stay up long because of the pain. She is on 100 mcg. Fentanyl patches every 3 days, with Dilaudid pills for breakthrough pain. My heart breaks to see how much she has deteriorated in the last year. Her mind is no longer sharp, her body is shaking with movement, and she is pretty much helpless. Her MO has started her on Femara and Ibrance telling her she could survive 5 years of more with this treatment. I think he is an idiot. In just her first month of both drugs, she lost her appetite, dropped several pounds, became even more unstable on her feet, developed 2 urinary infections, developed a blood clot in her leg, had a nosebleed, has blood bruises popping up without hitting anything, has had sore throats and in general feeling yucky. Is this med gonna help her or take her out quicker? We just lost my Dad 2 years ago to pancreatic cancer. He only lived 3 months after diagnosis. I am so stressed, most of the time I don't know what day it is. Is there any chance for this med to help, or are we just grasping at straws? I just need the truth and can't seem to get straight answers from her doc.

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Sep 27, 2018 03:34AM TheMotivator wrote:

My wife was diagnosed with triple positive stage three breast cancer of the right breast at 35 just 4 months after our wedding in 2012. We have been married for 6 years and, for the most part, our marriage has always been about the cancer and her treatments. She went through the double mastectomy, all the lymph nodes on the right side were excised as well as some surrounding tissue, reconstruction, chemo AC and Taxotere, radiation.

Later she had a historectomy (which she got a staph infection!), hormone blockers, which, btw, the side effects were awful for her! She went through all of them and none were real tolerable but she stuck it out with the lesser of the evils for as long as she could. She stopped taking them about a year after she was declared cancer free for the first time. She did well and She had been cancer free for almost 5 yrs. We were just staring to get some similance of a normal life and marriage.

Now the cancer has come back in the liver which makes her stage 4 metastatic. They found the golf ball size mass by chance when she had to have an emergency appendectomy. That mass was not on her last cancer scan 6 mo ago and it was about another 6mo before the next one! This is fast growing and aggressive so having to go in for the appendectomy was a blessing! They have done the y90 radiation treatment, which put her In the hospital for almost a week sick as a dog. Her oncologist put her on faslodex shots and Ibrance. These are supposed to be the ideal treatment for her type of cancer. Well the large tumor shrunk and continues to but smaller tumors are growing around it even through the current treatment. So back on the IV chemo! It's so hard to watch the strongest, most independent woman I know be beat down to a shell of a person, and I'm helpless to do anything except motivate, support, listen and love. We will get through this but it hard knowing that this is here for good now and will not go away and she will never hear those words "cancer free" again.

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Sep 27, 2018 05:15AM Moderators wrote:

TheMotivator and all the caregivers who shared their story here, thank you! We're sorry that you had to find our Community for this reason, but glad you've found us and decided to post!

If you're okay with that, please send us a photo of yourself or something that represents you to include with your story. It can be here or using the private messages function.

Thank you, and welcome again!

The Mods


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May 28, 2019 04:23PM MexicanMary wrote:

First, let me thank you for the wonderful opportunity for catharsis.

Mom was diagnosed with Stage IV breast cancer back in 2008. she found a lump in december 2007 and in June 2008 we were undergoing surgery. My sister is an ENT so she got one of her teachers to perform the surgery like it was his own mom. As a result, she got 43 ganglii removed.

What would I recommend other caregivers?

When we returned home, the vac that was attached to my mom's chest broke! So the first thing I recommend: get a list of suppliers. You will need a LOT of bed covers, the right soap (so that when you wash bed sheets they do not feel scrapy); you also need to have at least one more of the items that you will need for recovery, such as needles, syringes and even the vac. I remember I called the entire city's list of pharmacies to find a replacement and found ONE. Some pharmacist decided to stock his pharmacy like 5 years ago and there was only one left. And at that moment I had relatives and friends knocking the door to visit! hahahaha I am so glad I can laugh now.

Also, have another physician's number near by. In Mexico, for instance, institutional medicine (which is the insurance type one) often lacks committment and not because the doctors are bad (which some ARE) but because they have 70-80 patients to see in one 8-hour day! that is less than 10 minutes per patient! So sometimes you need to get a more thorough examination or give a doctor more time to really READ the results of the lab or studies.

What challenges have I faced?

To not accept what the doctors say at blind faith. I do not sit down and accept what they say at their face value. I ask more questions and I combat their statements until I am satisfied.

Smiling and having a good temperament. It is probably one of the hardest things to do as there are times when you want or need to do something else and it is at that time and moment that your loved ones needs something special or takes more time than what you should give him or her

All in all, taking care of your loved ones will give you peace and strength. The strength to be there for them when they need it. It is not easy to adjust to handling their depositions, to clean them, to accept the humor of a sick person and to understand that there are times when they are bitchy and upset because they are sick with one of the most terrible diseases of all times. It is not easy to realize that their life seems to be slipping away through YOUR firngers and that more than once, friends and relatives look to you saying: "so what are YOU doing to prevent/change/correct this"? As if the illness is your fault and the matching care is your own doing onto yourself.

But stay strong, because in the end; when all has been said and done, you will have peace of mind and soul.


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Jun 6, 2020 08:40AM Dd421 wrote:

Thank you for the opportunity to share my story.

My close friend was diagnosed in 2014 december with Breast Cancer. She decided to follow a holistic treatment plan . All pros and cons were presented to her but in the end it was her body and her decision. I accompanied her to various IV treatments /healthy alkaline based cooking classes and sat and held her when she was discouraged with results. But she had a very strong spirit and a strong will to live. For 4 years she lived her best and healthiest life not knowing the dangers that lurked within. If she felt weak , she never showed it.

Unfortunately in 2018 March she complained of inability to breathe and after an emergency admittance in the hospital it was discovered that her left lung was retaining quite a bit of fluid. This was the first time she started traditional treatment.

I accompanied her to every doctors appointment and to procedures to remove fluid from her lungs till in April 2019 it was discovered that her cancer had spread everywhere and she started her traditional chemo treatments. The doctors put an external drain for her left lung to be drained at home and I was trained to do that. In June of 2019 she made the decision to go thru the Issell immunotherapy program and after driving her cross country I accompanied her to the Issel clinic in Tijuana. I do beleive that this alternative therapy is a good program but it was too late for her. After 7 days there I made the decision to pull her out at midnight and bring her to a US Hospital in San Diego via ambulance. She had developed fluid in her right lung and was put on 45 litres of oxygen. The family decided to fly her back via air ambulance and I accompanied her on the trip back at the end of July..Eventually she had to have adrain in her right lung too and I drained both lungs on alternate days.

Her quick deterioration after that has left me in tatters. She passed away on September 9, 2019 and the last words she spoke to me was to ask if I had passed my reflexology certification test that I took on September 7.

I am now a certified reflexologist and I strongly beleive that my treatments helped her in managing her pain symptoms . I miss her everyday and I continue my practice in her memory by completing my advanced training in Reflexology Lymph drainage so I can help others.

There are no words to express my loss of her presence but God bless all the caregivers and families because it is a very compassionate and brutually raw emotional experience.


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Jul 29, 2020 09:45PM zeek_mama wrote:

I am new to this support forum, and caregiver to my Mom who was diagnosed in May with MBC (she originally had a stage II tumor removed ~10 years ago, followed be chemo, radiation and 5 years of Arimidex) and a clean mammogram in August. It showed up with Mets to many internal organs (including lung) and spine.

Her oncologist was confident Letrozole and IBRANCE combo would be helpful but she's had SUCH a rough time since May with everything continuing to go downhill, trouble breathing. several visits to emergency room, two hospital admissions. She hasn't been able to eat and without taking in enough her potassium fell to dangerously low levels. Then in one of her hospital visits she broke the head of her femur and had to have a partial hip replacement so now she is also rehabbing from that. Then a UTI, treated with antibiotics which lead to terrible c difficile infection where for a week she couldn't even make it to the bathroom.

Now she's essentially bedridden, constantly exhausted and can't even walk, she's so deconditioned. This has all happened so quickly. And Friday a week ago we learned that her cancer is responding to the IBRANCE/Letrozole and the lymph nodes are shrinking and less are positive. so it's working. But why does she feel so sick? She just says she wants to die even though she's only 75. Her oncologist says she shoudl feel better. I don't know what to do anymore, it's hard working full time, raising my daughter and trying to spend full time caring for Mom. I want her to get better. Has anyone been through this? Has your loved one regained their mobility and positivity as the cancer got under control?

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Aug 11, 2020 07:43AM edwards750 wrote:

Bless your heart I’m so sorry about your Mom. She has literally been to hell and back.

I was not a caregiver but my BIL was for my sister. She suffered terribly like your mother. He was exhausted but determined to be at her side and he was.

Don’t feel guilty that you have a family and a child to take care of who depends on you. There is only so much of you to go around. You do what you can but not at the detriment of your child. Not trying to be insensitive but there is only so much you can do for your mom.

It sounds like the drugs are working but I’m sure it will take time to recover from what she has been through which is a lot.

She knows you love her. Keep the faith.

Diane

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Aug 11, 2020 08:39AM - edited Aug 11, 2020 08:45AM by ctmbsikia

Haven't been a breast cancer caregiver yet. I've done 2 rounds of the dementia process caregiving. First was my mother after my father dropped dead (most likely from caregiving!) -then after Mom dies, my mother in law and step father in law were not doing well. It took a while to get things under control. Ultimately, they are also both gone now. I was diagnosed during this last round.

You really need to take care of yourself as well. Very, very important!!!

I recently lost my husband to cancer (well actually pneumonia set in and killed him)-as I look back I learned all I could and how to best adjust to his attitude of his diagnosis to remain positive and for the most part, we succeeded. He was positive and a true fighter. Towards the end though he didn't want to take meds and now looking back I wished he would have told me he may have been done fighting. He went fast and for that, I am grateful. He was never placed on hospice. We were sort of also blessed that our state was on lockdown and my daughter and I were with him every day. Working from home and sharing the load of driving to appointments and treatments. Being together like that was special and will be unforgettable thanks to our ever changing world.

My sister has ILC with mets to her spine. Just recently she was found to have slight progression, so her MO has switched up the treatment plan. First diagnosed in 2014 she had Arimidex and Xgeva. Now, she is off Arimidex and taking the Faslodex shots along with Xgeva. Hope this works for many more years. If she ever needed me I would care give again for her in a heart beat. I pray I won't have to and I go first.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)

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