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stage 4 breast cancer caregiving
Isla
11 Posts

my daughter has stage 4 breast cancer and is receiving chemo, her cancer two cancer markers are going down, but she is being greatly weakened by chemo…does anybody here know how many chemos do they usually give in this situation? She has had 6. Thank you so much!

37 Replies
supersu
711 Posts

good morning @Isla

so happy you found this corner of the internet. the cancer connection community is a warm and welcoming place to ask questions, share stories, and get support.
everyone here is either a cancer patient, or like yourself; a caregiver.

what a great MOM you are. thank you for being a caregiver for your beloved daughter; as hard as it is to believe, not every patient has that kind of loving support. it is a hard job - I hope you know that YOU ARE APPRECIATED.

I will tag a couple of members who may have experience with chemotherapy. @ashcon & @Skye2 if you are able to address caregiver Isla's questions that would be so appreciated.

I am also going to link you a couple of members who have caregiver experience. @Brighty & @Cynthia Mac if you could connect with caregiver mom, Isla, that would be so appreciated.

I trust others on a like path as your family with chime in throughout the weekend.

again, welcome here. please let us know how things move along for your family. there is much information to be had here. browse thru the previous posts in the discussions area, or ask a new question if something specific comes to mind.

have a peaceful weekend
su

#caregiversareANGELSonearth #welcomenewmembers #cancerinthefamily #breastcancer #cheomotherapy

Skye2
60 Posts

@supersu @Isla

Hello! …and welcome! I am so sorry you and your daughter are going through this, but how wonderful you have each other.❤️

I have invasive ductal carcinoma, small tumours, but they spread to lymph nodes, so I am considered stage 2.

I did 5 months of chemo - Adriamycin and cyclophosphamide, every 2 weeks for 2 months, followed by Taxol chemo every week for 3 months. I don’t know if this is the same chemo your daughter is getting?

I found the Adriamycin harder to tolerate from a side effect perspective, but was usually feeling better by the 2nd week.

Comfort foods, small meals, a comfortable bed, and lots of water. The water is very important before and after chemo, to hydrate and then flush it out! I always felt better when I got all my water in - 2 litres/day if possible.

Daily exercise- a walk even if she is able for some fresh air…and a little sunshine for some vitamin D, and then rest and sleep to recover. With the Taxol chemo, I received steroids which gave me insomnia, so on chemo day, I was always awake late! It took a day or so to bounce back.

My appetite was very fickle during chemo- I would crave certain foods, and despise certain food (cooking) odors. My tastebuds were also affected, and most often food tasted like “cardboard”. During the summer, I ate a lot of salad - “eat the rainbow”, but into the fall, I wanted soups and stews… the one thing I couldn’t do was plan and “make” meals- I just had no energy. I struggled with fatigue as well as bone pain, which made my walks and hikes more challenging, but unless I truly couldn’t push myself to go, I went. I very definitely had “off days”, where I stayed in pyjamas all day, and just read, or slept, or watched movies.

I also found I was weepy, and blue…just worn down despite having family and friends supporting me. I was fortunate that in the summer we could do porch and patio visits….not so now in the winter! And of course, Covid just makes everything worse.

I did FaceTime a lot, and one ”breast cancer friend” even organized a zoom call so I could ask questions and visit.

There are cancer psychosocial resources available in every cancer treatment facility, and I would highly recommend seeing what they have to offer, even just in counselling. There is also a dietitian avmailable too!

I wish you and your daughter strength and hugs to get through this very difficult journey. We are all here to help and encourage you whenever you need it.❤️

Isla
11 Posts

thank you for your reply to me! This is second round with breast cancer, first time she had bilateral mastectomy, but no chemo. She was cancer free for several years, but had not follow up from BC cancer agency, something that I don't understand at all. When she had some early symptoms she went to her GP and even a naturopath, they dismissed it as “Covid” stress, or similar…her symptoms were also vague: tiredness, slight shortness of breath…nothing was done for her…she went on working on a stressful job for the year, and then sought doctor's help for worsening fatigue…shortness of breath…a scan finally revealed the ugly truth…stage 4 cancer, spread to many organs…I am so angry that there was no follow-up…and no action by GP even in time….it's hard to get pass that now when she is fighting for her life…

Trillium
1761 Posts

@Isla - I would have a hard time getting past the anger and frustration you feel too. I’m so sorry this has happened to your beautiful daughter.

I am caregiver for my son who was diagnosed with stage 3 testicular cancer in Jan 2020. He had seen his GP for an enlarged testicle just months after his dad died from cancer, and was told it was normal. 2 yrs later he was diagnosed with this cancer. I was so upset but then had to focus on getting him well with his current team of Drs.

Now whenever both my son or daughter are not well I immediately fear that it is cancer that may be misdiagnosed. My son had a lump in his remaining testicle this past summer and luckily told me so I could get him to his doctor( he has a disability) and an ultrasound which was diagnosed as a benign cyst. So hard to not think about a possible error in that dx but I have to trust that it is all ok until I see something to the contrary such as the growth getting bigger.

I so hope for your daughter that treatment can alleviate her cancer and that your family and friends surround you with support. Try your best to focus on the here and now and follow her lead with the decisions she makes going forward following the advice of her care team.

Warm hugs for you both❣️
Trillium

Skye2
60 Posts

@Isla @Trillium

…I have no words…your stories are beyond tragic.😢. As for your daughter Isla, is there anything else I can offer in advice or help?

To both of you, I would be paranoid as well of every symptom I ever had…. I don’t know how to get passed feeling let down by doctors and a system who could have helped you at the time. Life certainly is not fair, or none of us would be here.

Having said that, please keep us posted, and know that we are all thinking of you.

Brighty
8152 Posts

@Isla your story is truly heartbreaking and I"m so very sorry that you are going through this with your daughter. It's dreadful when a doctor dismissing a patient's symptoms and by the time they are diagnosed it gets to this point. I don't know how I'd get past the anger either. I had anger too, but I'm not even sure who I was angry at. I was just angry at the world. My fiance was the opposite, refused, refused and refused to see a doctor, although he has very obvious symptoms which developed and got worse as time went along. He had esophogeal cancer. He had hiccups, heartburn, regurgitation of food, lost a ton of weight, and got to the point that he could only eat boost and ensure. And he hid this from me ! He wouldn't come over during mealtimes, so he could hide the fact that he wasn't eating. When I offered him snacks or food he'd say he wasn't hungry. He wouldn't even come to the wedding tasting when we were selecting the menu of what we were going to eat. He said it was too “girly” to do stuff like that. When the truth was, he couldn't swallow food, and didn't want me to know. It took me literally 5 months of nagging until I could get him to a doctor. He didn't even have a health card! He didn't take care of himself at all and hurt to watch. It took pnemonia that finally got him into emergency, where they asked all his symptoms and he told them. They wondered why the heck he waiting so long to get to a doctor!!!! More tests were done, endoscopy, biopsy, and then the diagnoses which shattered both our worlds, stage 4 esophegeal cancer. Even with all those symptoms, I never in my wildest dreams imagined such a diagnoses………….he was only 41 at the time of diagnoses. Wasn't cancer supposed to be a disease for older people? How wrong I was!!!!!!!!!!!!!!!!!! So what was supposed to be wedding plans, prep, showers, bachelor parties and the whole thing turned into a year I will never forget. It was a year of devastation, crying, driving to hospitals, doctors appointments, watching him waste away, and feeling constantly helpless. My heart goes out to you. I only learned things along the way of how to cope and get through. I called up the hospital I was already seeking councelling at for anxiety issues and asked them to get me into group therapy which they did. I had a group, plus a one on one lovely therapist who taught me coping strategies. Number one, self care. But isn't self care selfish I asked? NO, it is crucial. you can't care for anyone unless you care for yourself. Which I didn't. I was run down, lost a tons of weight, didn't eat either and cried all the time. I was looking after him all by myself and with no medical experience, had no idea what to do, had no idea how to work the feeding tube, no idea how to cope. My parents were a great support to me, while his family bailed. To be continued…….I don't want to lose this post so I will post and then continue…………..

Isla
11 Posts

Thank you for your words….I am (and our family too) doing everything we possibly can for my daughter now. I just fear that her body can't take the heavy chemotherapy as her side effects have been brutal…and also waiting anxiously for her cancer markers to go down, they have come down a lot, but still have a long way to go…we have been told that once they plateau, don't move downwards anymore, then chemo doesn't work…also that she will be on treatment (possibly IV) indefinitely afterwards….this is all so heavy to take in. I would like to advocate somehow or lobby for, whatever the word, for BC Cancer Agency to have at least regular follow up for breast cancer patients…I still have no clear answer if they actually do any follow up. My daughter was told after the first bout with breast cancer, that there will be no such thing….Very horrible to me as I know in many other countries it's a given,,,follow up exams regularly….does anyone here know??

Brighty
8152 Posts

@Isla so I was left alone to care for him…………which was overwhelming for me emotionally. I cried ALL the time. My parents saw how run ragged I was and called up his family, who had bailed on us and YELLED at them. She said they had better step up and help out. And she told them exactly HOW they were to help out. This and this day, this brother was going to drive, this and this day the father was going to drive to appointments, and that's that. You need help, because you need to take breaks to look after yourself. The only way to take breaks is to ask for help and be SPECIFIC about what you need from others. And believe me, it was a fight to get his family involved. His dad would say he was busy on the golf course and to leave him alone. I even spend many hours in the oncology social worker's office. There were times after his chemo when he was so weak, I couldn't get him into the car. I called his dad, who hung up on me………..and then the oncology social worker called him to come help, and he hung up on her. Then when I told his dad what days I needed help with driving, he said he didn't want to drive in rush hour traffic. Come on!!!!!!!!!!!!! It was my own family, my mom who came to the hospital to help out with getting him in the car etc. After my mom being very rude to his family, they finally stepped up and pitched in which took a huge load off me. I didn't feel as alone and overwhelmed when they started pitching in. Anyways, I think I'm going on and on now, but basically my tips are self care, asking for help, be specific about what you need, get support from family and friends you can count on, a social worker too, I also went to work which took my mind off his cancer for a bit, did my mundane tasks like grocery shopping, to keep the normalcy going, watched the shows I like to watch, to give me some joy and take my mind off things……..and spent as much time with my fiance as possible. I pressured him to talk to a social worker too, but he'd have none of that. I also learned (from him) to leave our evenings together a ‘cancer free’ zone. He wanted to talk about normal things too, the hockey game , the kids at my work, and do normal things too if he could. Mostly all he could manage was to watch tv. but at least I could be there with him to watch and laugh. Just being there is enough. Let the person know how much you love them. Try and do things with them, like a walk, or a game, or funny show. Ask them what they need and what they feel up to. it's such a hard and devastating road to walk, but you don't have to face it alone. This site was a lifesaver for me and I hope the support here will be a lifesaver for you as well. You have heard from some wonderful members @Skye2 @supersu @Trillium ……….and i'm sure you will hear from others too. Please lean on us here. We understand.

Isla
11 Posts

Dear Brighty, I am so sorry for what you had to go through….when reading your story it was just like my dad's…long time go…same cancer….he refused, did not want to see a doctor…could not eat…I was just 15 at the time and was absolutely bewildered what was going on? How come dad can't swallow, can't eat…even broth did not go down, in the final days at home….he passed away in a hospital…I was with him in his final minutes till nurses whisked me away….It's unimaginable what you have gone through….your dear fiance…your future plans come to nothing….so much suffering….I would like to hear how everything went…and how you managed….and how you are doing today…sending you hugs and prayers…

Brighty
8152 Posts

@Isla I'm not familiar with the BC health care system……..ive never heard of such a thing as no follow up…………………… @WestCoastSailor lives in BC…………….could you possibly shed some light on the health care system there?

Isla
11 Posts

Hi Skye2, thank you for your kind words! I just want to do something about this neglect by the “system”, I am a teacher and have a strong sense of justice, I don't want anyone else to get stage 4 cancer when it could have been caught in time, this stage has a very poor prognosis, which truly scares me….would it have killed to order at least an xray? (by GP) when my daughter first complained about shortness of breath…her cancer history was know to the doctor….I just can't seem to get past this although I am very involved in her caregiving now….and extremely busy…how can I find out if it's really true that BC cancer agency doesn't do follow up exams..or was her oncologist at the time just saying that???

Gee
3 Posts

@Gee and thank you for reaching out. i am so sorry to hear of your sons diagnosis and the passing of his father. Talk about an emotional roller coaster. i am glad the second scare was just that but i can only imagine the feeling and i too would be rushing to the Dr.

This seems like somewhat of an out body experience to me and i am just going through the motions right now. after months of misdiagnosis & 3 biopsies we finally given a diagnosis Dec 0½1. and had to travel to Toronto the next day to start treatments away from other children and family. its been so hard but thankful for Facetime .

sending healing thoughts and prayers to all the families at all stages along their journeys. My heart goes out to all

take care and thanks for having a place to chat

Brighty
8152 Posts

@Isla im so sorry you had to go through that with your dad!!!!!! Thst must have been horrible!!!!!! My fiance passed 3 and a half years ago but NOT because treatment was not successful. It was. Even with stage 4, he could have survived. The surgery went so well that they got all cancer out and he was cancer free. Then he went back to his addictions, smoking and drinking. The doctor warned him it would kill him to do that again. His stomach was like a third of the size after his operation and in no way could stand those addictions. But the addictions were powerful and over took him. There was nothing anyone could do to stop him. One day I came home work and found him unconscious on my bed. He had been without oxygen for over an hour and it too late too revive him. I blamed myself for a very long time. But I found hundreds and hundreds of empty alcohol bottles all over my apartment that day. There was no stopping him. The alcohol killed him in the end,when he could have survived. I went for grief councilling for a very long time and worked through the anger and guilt. Im doing ok now. Councilling helped as did the support on this site. So now it's my turn to help others going through this dreadful thing. We will be here for you every step.

Whitelilies
1862 Posts

@Gee Hello…..How is your daughter feeling? How are you doing? May I ask……as you shared you travelled to Toronto……are you at Hospital for Sick Children? (One of the best, in the world)…..if you stay alongside her…..they can help you with affordable accommodations nearby…..I think there is a Ronald McDonald “House” too…..for family members, wishing to be near, their loved ones, getting treatments. At whichever Hospital she attends…..there should be a Social Worker to help and support family/family members….they are a wealth of knowledge….

Let us know, if you can, how you are both doing!

Regards

Whitelilies

Gee
3 Posts

@Whitelilies Hello , yes we are here at sick kids and it has been an amazing experience with everyone. from the moment we walked in all the right people were in place and applications were filled out and social workers, teachers, ect… If you have to be anywhere i guess here is the best.

thank you

Gee

Isla
11 Posts

@Brighty oh, I am so sorry that he could not get free from those substances…and, for sure, you were not to blame. Nobody can force another person to do anything, same was with my dad, he listened to nobody….as sad as it is, there is only one thing to do: Let go…you are probably a very kind and empathetic person…"too kind" I am tempted to say, not trying to offend you, but I am glad to hear you have recovered and have found peace….as far as my daughter, she wants all help, all treatment, all prayers, anything that would help heal her cancer, she is in the middle of her wonderful career as a young teacher, much much loved by her students and her colleagues and friends and everyone in her life. That's what's killing me, she always helps everyone, counsels the broken hearted and is everyone's friend in times of trouble….she has so much to live for, so much ahead of her…Frankly, I don't know how I will live on if she doesn't survive this cancer….we are very close, always been, and I can't see any “higher” purpose or meaning or benefit to anybody that she got this hideous cancer…I cry every day and really struggle to keep my head above the water right now, sleeping only with sleeping pills….trying to stay strong when caring for her…

Trillium
1761 Posts

@Isla - I can’t imagine your grief and fear at the possible loss of your daughter with this metastatic cancer diagnosis. It is normal to have the symptoms you are describing but if it starts to prevent you from helping your daughter then that is the time to seek professional counselling and help from your doctor. Getting sleep with the help of medicine is better than not sleeping. It was helpful for me too.

It is vital to take care of yourself too. The analogy of the airplane oxygen mask applies to all of us caregivers. You have to put your own mask on first before you can help others with their mask. Even though you have been through other caregiving situations before, we have to practice good self care with each new situation.

For me this free caregiver course below was so helpful. @Gee may find these links helpful too.
https://ontariocaregiver.ca/scale-program/#

Advocating for better followup care of breast cancer patients is a great idea! If you post your question under the breast cancer forum ( go to cancer type link under forums) will get response from others with breast cancer. Meet @ashcon who became a fabulous advocate and may have tips for you.

The Canadian Cancer Society has a great information specialist program where skilled people can answer your questions, help you find resources for your questions and will be your best guide.

https://cancer.ca/en/living-with-cancer/how-we-can-help/talk-to-an-information-specialist

Thi Wellsprings program has free online supports for parents with children for @Gee and many others for caregivers, as well your daughter may benefit from these great programs @Isla

https://wellspring.ca/online-programs/programs/all-programs/

Keep hope that treatments will work until you know they wont and even then there are possible research drug trials that she may benefit from as many here have. Fight the good fight….


Whitelilies
1862 Posts

@Gee Hi……this is wonderful to hear…..so glad you feel well supported there….All Good!

Whitelilies

Brighty
8152 Posts

You absolutely did NOT offend me @Isla . I can't imagine what you are going through………cancer is so grossly unfair……….there's no rhyme or reason as to who gets it. I get the daily crying and the sleeping pills, because I was and still AM on sleeping pills. I still do cry sometimes. Yes, like @Trillium said, please seek councelling at the cancer centre. They are trained to help you with situations like this. My councellor always said “ you are stronger than you think you are.” I didn't believe him and wanted to swat him one when he said that. (no not really lol) but we are stronger than we think. To be honest with you, I felt the same way, didn't know how I would go on if I lost him. It was my brother that got me a sweet little 4 legged feline best friend named Vinnie who brought me back to life and gave me a purpose to go on. And besides Vinnie, my purpose, (who is currently snoring in my bed) I suppose is to give back here on the site to the folx who helped me get through a terrible time. I will be praying for you and your daughter. Treatments have come such a long way, and so many people live well and much longer with stage 4 cancer these days. I pray treatment works for her. There's ALWAYS hope. And we will be with you every step of the way here.

@Brighty Thanks for tagging me. Let me rush to add that even though I have male breast cancer I'm no expert.

@Isla This is the common procedure for most cancers in most places including BC. When treatment is successful - there are no signs after a period of time - then the patient is released to the care of the GP. That said, a good hand off includes making the patient aware of what things to be on the look out for. Lungs, liver, bones are all common places for metastasis to occur. So indeed shortness of breath should have been flagged. However a simple X-ray isn't usually enough to detect tumours in the lung. Hence the use of low dose CT scans for lung cancer screening. GPs aren't specialists though and when in doubt should be handing it off to someone who is - respirologist maybe or back to the oncologist.

Depending on the type of breast cancer your daughter had there may have been followup treatment to manage hormones but even that is often handed off to the GP.

We trust doctors with our care. It is important though to be advocates for our own care. Easier said than done. Fear of re-occurrence is very common though and many doctors don't take those fears as seriously as they should.

#mbcNeedsMore is a good hashtag on social media to find more information about the efforts being undertaken to educate breast cancer patients on what to be aware of. We have a group dedicated to advanced cancer that you may wish to join. https://cancerconnection.ca/groups/home/75

@ashcon or @Kims1961 do you know where that pink (of course!) graphic of metastatic signs for breast cancer patients to be aware of is? I've looked for half an hour and can't see it. Or maybe I saw it on Twitter…

Angus

ashcon
2081 Posts

Hi @Isla

I join the others in giving all my heart and hope to you and your daughter! She sounds truly marvellous and lucky to be so loved. It sounds like she's got some fierce determination in her too, despite her weakened state! I am crossing fingers that her markers come down and she can move forward with “living with her cancer”. How old is your daughter? I've heard of many young-ish women with stage 4 living for years, just keeping it at bay. I hope the same for your daughter.

I understand your anger about the apparent lack of follow up after her first dance with cancer, and then the lack of diligence when she started having suspicious symptoms. I'm in Ontario myself, but I have heard that most (all?) cancer centres in Canada offer some kind of follow up or hand off when they discharge a patient back to their primary care provider. I found this link from BC Cancer Centre

http://www.bccancer.bc.ca/health-info/coping-with-cancer/life-after-cancer

I think there are so many stories out there of missed or late diagnosis happening for one reason or another. Whether it's something the doctor(s) did or didn't do, or the patient did or didn't do. I applaud you for wanting to ensure that what happened to your daughter doesn't happen to anyone else.

There's also the PHSAs Patient Care Quality Office for putting in a complaint or concern.

I also hope that your mind and soul can start to settle soon, that you can get some sleep, and that you can start pursuing wellness for you too. For your daughters sake! There are some amazing sleep and meditation apps out there. I didn't really put too much stock in them myself, but after not sleeping for 5 days when I got my cancer diagnosis, I tried them and they did help!

Good luck with your self care and your advocacy. ❤️

@WestCoastSailor that pink graphic of signs of metastatic breast cancer doesn't sound familiar to me. But I recall my oncologist rhyming off things like bone pain or any kind of unusual pain lasting more than 2 weeks, fatigue, headaches, changes in vision, shortness of breath….

#advocacy #mbc #chemosideeffects

Kims1961
2181 Posts

@Isla I am so glad you have posted and hope you feel the circle of support from all. Some great responses here.

After I finished active treatment for breast cancer, I live in Ontario, the plan was to see my oncologist yearly, unless i had any “concerns”. As a breast cancer patient - I wondered how would I know what is a concern? I agree - they really could do a much better job of follow up and reviewing health history.

I wonder if your daughter could mention the side effects of chemo to her medical team. During my chemo treatments, they were able to lower the dosage on one of the meds, to help it be more tolerable. They should also be able to clarify what the treatment plan is and length of time. That is a very valid question.

@WestCoastSailor …I couldn’t find the info that you mentioned but did find this on the www.cancer.ca page linking to info the American Cancer Society:


I echo the words of others. You are an incredible team for your daughter. This is hard - very hard. As a parent, we wish we could take this all away - but - she has love and support - and a place where she doesn’t have to be strong or positive or a warrior - but rather just be your daughter.

Please reach out anytime. You are not alone. We are here. Kim

Littlebeth
119 Posts

WestCoastSailor

Here is the URL for the graphic you mentioned:

https://www.abcdiagnosis.co.uk/resources/infographics/


Skye2
60 Posts

@Isla

Everyone has offered up alot of great advice and support! And “yes”! …absolutely, keep in touch with your daughters care team. I had one particular medication that debilitated me, and my oncologist removed it after my first treatment. I was “interviewed“ on admi for every chemo session about literally everything, and the nurses would call the oncologist if I was having any kind of problem.

My Dad died of kidney cancer when I was 25, and a new nurse. I know the role of caregiver as well, and you need to stay on top of your health and well being for all your sakes! Some great resources mentioned here to help.

I am approaching the end of my treatment (12 radiation treatments left), and I’m scared of recurrence already! I’m in Ontario as well, and I really hope there is some kind of follow up?!

Anyway, this is your time and your daughter’s time - I hope you both have family support who can step up and support as well as your doctors and oncology team.

Isla
11 Posts

@ashcon @WestCoastSailor @Brighty thank you so much for your informative replies! I know there is no going back in history, but I don't want anyone else to go thru this the way my daughter has to….she was offered hormone therapy pills after the surgeries and first bout with breast cancer. However, the Tomoxafin (not sure of spelling) didn't suit her, the side effects were so horrendous that she could not work or live a normal life…she is single and has nobody to support her, so she quit the hormone therapy.

I do now blame myself for not pushing her to go for further exams, even after her GP didn't take her fatigue seriously. That spring (2020) I was myself so exhausted, selling our family house in the middle of Covid outbreak…I should have done more for her, as she complained about fatigue so much. But, again, that is in the past.

I just have to process things thoroughly, I have always been of the opinion that one has to advocate for himself, “the system” does not catch everything, in big cities you are just a number…few people really do care about individual people in the medical system. We are lucky to get max. 15 min. with the oncologist at her appointment, not her fault either, she is booked solid all day. She does drop by usually when my daughter is receiving the chemo IV, because the clinic is small and her office is beside the treatment area. But, again, my daughter's treatment is in one person's hands, it's a scary thought to me! She has to much to live for, she wants to return to work, even part-time….I honestly don't know how we will go forward if this treatment is not successful….I won't google this anymore as every time I do so, more bad news face me.

Thank you for your responses and help. I do so appreciate it in the midst of this gloom…

It feels like life has stopped, especially now in Covid time, can't go anywhere or do anything, or see anybody, I don't want to bring any further illness to my daughter…

Isla
11 Posts

@Kims1961 thank you for your words. My daughter does not know how long chemo will be continued, she receives info about the next appointment while she is finishing her current one at the clinic. I understand hat chemo will not be continued anymore when the cancer markers stop going down and have reached a “plateau”…there is so much that we don't know or understand and it's very stressful to start researching on your own….

Brighty
8152 Posts

@Isla im not sure why I didn't think of this,yesterday. Id like you and your daughter to meet another wonderful young lady who is dealing with stage 4 breat cancer. @Cupcakes can be of tremendous help to you.

Cupcakes
103 Posts
Thank you for the tag Brighty
Hi Isla‍ welcome to our family. Reading your story is nothing less than heart breaking. I am so very sorry. What an absolute cheat on your daughters life. I am trying to understand how the doctors could let her just slide through with no follow up. Unfair. I hope if you continue to get your story out there it will absolutely encourage others to follow up and get checked. You just may save some lives out there. No one should have to go through this. Stage 4 sucks I remember in the beginning even when I’d hear the number 4 used in a sentence I would cringe. How crazy right? But I want you and your daughter to keep hope. I’ve been living with it 2 years now and was given in the beginning 2 months to live. So don’t take what they say necessarily. I live a totally normal life. I’m not sure what chemo your daughter is on but I can tell you a bit about my chemo journey. I am on the 4 treatment now. I have done 2 IV’s and 2 oral chemos. I’ve been lucky with minimal side effects. I read your daughter is having bad side effects ? Are they helping her manage them? You have come to a good place here. The people are outstanding. You caregivers have a special place in my heart because we know you go through it just as much as us patients. God bless you for that. Some of the stories I read my mind can’t comprehend. I’m glad you are making connections here. If you or your daughter ever want to reach out feel free. It’s just nice to have someone that can relate ❤️
Gee
3 Posts

@Trillium thank you i will most definitely take a look at that. 🙏

Essjay
1721 Posts

@Isla so sorry to hear about your daughter.

i hear so many stories about cancer returning some years after being first diagnosed. It is a cancer patient’s nightmare. When it returns it’s usually not in the original location, it’s emerged elsewhere like the bones, the lungs, the liver, the brain. And I hear stories about the challenges being diagnosed too. When cancer appears in a distant part of the body it is stage 4 and incurable. However, the treatments are improving quality of life for many stage 4 patients. I’m especially inspired by @Beespecial and @Mammabear who are living their best life with stage 4 breast cancer and there are others who may wish to chime in.

Im in Manitoba and 3.5years post my breast cancer diagnosis (stage 1). My family doctor is responsible for twice yearly checks for the next few years and for ordering my mammograms and breast MRIs. She also orders tests to check out any symptoms I have - I’ve had a few bone scans and a brain scan recently - all clear for cancer. But it’s up to me to make the appointments to see her (I have to remember) and it’s up to me to raise issues or concerns. We have to self-advocate, and we have to be self-aware, but no amount of self-advocacy is going to change the facts that when Cancer metastasizes it is incurable.

How are you doing? Are you getting help to process what is happening to your family? There are supports to help patients and families and it’s well worth tapping into them. And spending time doing things you love to step out from the cancer world - so important…

best wishes, Essjay

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