First I wanna say that this site is really helpful and I am really grateful to all of your posts. Honestly my parents didnt tell about my moms stage 4 cancer which was diagnosed 1 year ago and I found it last week itself. So, it has been rough 7 days .
My mom had masectomy in the breast and the cancer has spread to 3-4 lung nodules with size of 8 mm and fdg uptake of 2.5 in one and 4.7 in other within one year. I know it maybe not a good forum to post it but I live outside India and I am thinking of eventually moving with them but dont wanna go there immediately and risk their life with covid. I asked the oncologist that question as well but couldn't get a concrete answer:
She has a grade 2 cancer and she went through chemo and radio and now she has been suggested letrozole/palbocicib. My question is how fast does stage 4 cancer spread .I read on internet that grade 2 spreads moderately. She currently only have it in nodules and on internet it says for stage 4 cancer 22 percent people live for 5 years and it is freaking me out. Is there a difference for the prognosis of stage 4 cancer which has reached nodules vs cancer that has reached other body parts.
I know that I can only pray but just wanted to have a perspective on the prognosis part.
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I'm so sorry to hear about your mom. MBC is tough on everyone and sometimes it can be harder on those close to someone with the disease than the person going through it themselves, particularly when you're not getting the full picture.
I'm no expert but learning fast and have found the people on this forum to be extremely kind, helpful and knowledgeable. I'm on palbociclib (also known as Ibrance) myself and I know some people do really well on it for a long time. Sooner or later (hopefully later) a change in treatment will be required but there are other drugs in the arsenal that can be drawn on.
In terms of perspective, it's worth bearing in mind that those in the figures for surviving the 5 year mark were diagnosed 5 years in the past. Ibrance itself is a relatively new drug and treatments are improving all the time.
I can't really help with your decision to move to India but my own experience was that when I was diagnosed with stage 4 this time last year, I had a lot of dark thoughts but largely due to learning more from this forum I'm in a happier place now.
I wish you and your mom all the best. Keep in touch ✨
Thank you Sue. Yeah there are lot of candidates for medicines and that can be confusing too. oncologist said its just combination that you try and see which one will suit. My mom has already tried cheemo and radiation and after that had a PET scan but the lung nodules size increased so they have suggested a combination of ibrance/letrizol
I have been stage iv with mets to the lungs from day of diagnosis. Took a while for it to spread to spine in my back. But for the most part, I can still live on my own and take care of myself. I was ER+PER, HER2a-(?). I was told it was the "good cancer." There are people on other forum boards I met that had been stage iv for five or more years. Some were still working full-time.
Please the American Cancer Society says that (they really need to update that info). I met many many women that were stage iv and were way past five years. As a matter of fact, the other day I was reading that many stage iv are living past 10 years with the new meds. It does depend on what type of breast cancer.
The hardest they can treat is triple negative. John Travolta's wife died from metastatic breast cancer and I was wondering why she died after two years after diagnosis. Just recently I read she was triple negative which is much more aggressive. So with the "good" cancer, women are living much longer.
Hi .It is really commendable how you are taking care of yourself on your own in tough times. Did you use ibrance at some point and how was your experience with it.
I really have no choice. I have no family (really, some people don't...) none of my friends live in Brooklyn so I am alone and I do not drive which is why I stay in Brooklyn bc I can get around with buses and trains. But there are times when I wished I had one person that lived in Brooklyn. My friends have their own families and issues to deal with. So it is not a choice for me to be alone but I am used to since I have been on my own since 18 and supporting myself.
I was diagnosed at stage iv so I never had chemo, radiation, mastectomy. The breast cancer center said it does not matter when you are stage iv to do any of that and then told me I would be going to their cancer center around the corner and be assigned to an oncologist who would treat the whole body. I stupidly asked if I would lose weight. She said no, I would probably gain weight from the meds. I thought geez, not even a silver lining.
I then started at the cancer center so never being sick I was not sure what to expect. I was first put on Ibrance with the injections. All the onco told me was that "food may taste different." I had no idea how cancer worked so just took that at face value.
The first two weeks I thought this is not too bad. I feel normal. Then in my third week, I woke up and felt like somebody beat me with a bat. Chemo fatigue which I had never experienced and which scared the heck out of me. I was so so glad my week off was coming up bc I live alone and have no family or friends that live in Brooklyn and I needed to go food shopping which is not close.
This was in August when I started. I was exhausted towards the end of the third week and took alot of naps. Then my week off came. I was not prepared for it at all bc my onco NEVER even mentioned the possibility of how I might feel.
I have central air. It was August. I had to shut off my central air and my apt. gets hot like an oven. I could feel how stuffy it was and yet I was freezing. My blood felt like it was ice. I had a wool robe on, was in my bed with loads of blankets on and actually put a towel in my mouth, because I was so cold my teeth were chattering and I was scared they would break. I could barely move out of bed. I was scared of how badly I felt. Then when I had to start it again, I felt normal.
I told my onco this on my next visit and she said my body needed to adjust. I told her I wish you would have warned me bc I had no food in the house and I could barely leave the bed. This happened all three cycles. It got the point I was getting depressed when my week off was coming up and I felt like a drug addict. I wanted to take the pills before I was supposed to so that I could feel normal for at least two weeks.
Anyway, an infection developed in my legs (inside boils of my upper groin area) that in the past a dr. would give me antibiotics and it would knock it right out of my system. I learned the first time when I did not pay attention and it grow to the size of a golf ball and when I wound up in ER and they had to put a needle in it to drain it, they gave me a rubber thing to bite down on. I screamed so loud that two other doctors came running into the room. I was NEVER going to let that happen again.
Well, the antibiotics did not work. For five weeks, they had me on them. I had to have surgery where they cut tunnels in my legs and what was supposed to be a one month recovery turned into four months. It was horrifying and tough because I live alone. I had to have a visiting nurse came every day to put in dressing and wrap it bc I could not do so.
When it was over, my onco said she was not putting me back on it. I had no idea that there were different dosages. She put me on the 125 mg. and that was it.
But realize many many women it has and continues to work great for them. That is when I found a forum board and I felt relieved. I then learned that some women on Ibrance (the 125 mg) felt no different on or off the Ibrance. Some women felt better on their week off and there were others like me that on the week off, they could barely get out of bed.
So I realized that everybody has different reactions or side effects. It depends what your health is to begin with and what other meds you are on. So I hated the drug. I was always tempted to take the pill anyway on my week off bc I felt so sick.
But many women from another forum board did so well on it which is why it is the first line of treatment in my area. Some women were on it for 3 years or a bit more if they were in the trial phase. I had a nurse from Pfizer call me every month to document how I felt and such.
So you cannot go by anybody else's experience with it because the most important thing I learned was that everybody has completely different experiences with it.
As you can see, I am a bit wordy. I do not see people much (especially with Covid) so I am alone alot and tend to write long emails. I can go days without talking with anyone and some friends have dropped by the wayside so I tend to write long emails LOL
I’m sorry to hear about your mom. Being a parent who has stage 4 cancer I understand why they didn’t tell you. I was diagnosed in December of 2016 bone only at first. Just recently progressed to my liver. But I still have not told my daughter. As of now I still do most things sometimes just slower or I need a nap. I do not want to add anymore stress onto her.
But one thing I have learnt is don’t go by the numbers on the internet for survival rates. They combined all of the breast cancers together. Plus with all of the new meds her onc should just keep trying combos that work.
It’s very scary at times but have faith and do some research on what her onc is suggesting so you are educated. Best thing is just support your mom.
I’m sorry to hear about your mom. God willing, she’ll respond to the treatment and her stage 2 will go into remission. And she’ll not progress into Stage 4. Wishing your mom and you all the best.
Its totally understandable that you're looking for answers. Uncertainty can create anxiety especially in serious situations like this.
The replies you've had so far are excellent. I would particularly emphasise the advice to be informed through research.
I was diagnosed Stage iv, grade 2, from the start. Breast, lungs, liver and spine. Later spreading to the membrane covering the brain.
I had a lumpectomy, hard core chemo (which I had to stop early due to lung toxicity) with bone strengthening injections, then antibody treatment and letrozole. I stopped letrozole after 3 months due to side effects - lack of oestrogen causing severe dryness/soreness affecting my quality of life. I later read that letrozole only adds 2 to 3 months to survival figures for post menopausal women. Not something we're told when its prescribed. About the same time scans showed progression on the antibody treatment so I was switched to kadcyla and bone strengthening injections every 3 months plus partial brain radiotherapy (the latter being very successful to date).
After six months I stopped the bone strengthening injections due to pains in my jaw and infections/lumps in my gums -well documented side effects. I can't recall the details now but again through research I learned the benefits were relatively small compared to the risks.
I continue to take the Kadcyla and I'm pleased to say I've had very good response on scans, no evidence of disease in the liver, only a few tiny mets in the lungs and spine.
On Kadcyla I've had very few side effects. Muscle cramp was a problem but since I've been taking magnesium twice a day its stopped. Other than that I am, understandably, more tired than I would be without the cancer.
The key thing I've learned since being diagnosed and researching is that when we're signed up to take chemo and other treatments, we're not given information on the benefits so we can weigh these up against the risks and truly make an informed decision.
Other learnings are that no two patients are the same. Our bodies may respond differently to drugs, our life situations may be different etc. Added to that the tumour may not spread/act as expected because real life isn't based on averages. We can be at any point within the curve.
Sorry if I've 'gone on a bit'. I hope some of the info is of help.
Sounds like your mum is doing her best at this difficult time. I truly wish her a long life with optimum quality.
There are many lines of treatment beyond letrozole and ibrance and they continue to come out with more. Ibrance itself is a new drug that wasn’t available 10 years ago.
Please don’t read about the averages - they’re just numbers and not specific to your mom. That’s like saying the average driving speed is 40mph in the US. Well, some streets are 10mph and some highways are 55 - 40mph means nothing. I have liver mets and the stats say I have 1-2 years. I’m planning on being here longer than that, god willing.
Everyone reacts differently to the drugs. All we can do is be our own best advocates to make sure we get the care we need and live a lifestyle that puts us in the best position for survival. Having a positive outlook helps too.
With artificial intelligence and big data analysis, I am hopeful that they will be able to develop new treatments faster and hopefully even come out with a cure. But realistically none of us know when we are going to die. So the best thing you can do for your mom is to spend time with her, help her live in the moment. As a mom, all I want from my kids is the knowledge that they will be okay without me but that they will cherish their memories of me.
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