Do many people survive stage 3 long term ?

libby2002

hi

I was recently diagnosed with breast cancer. I had 4 months of neoadjunctive chemo only to find that it was in 4 nodes, rather than the previously thought 1. The chemo had killed 95% of the cells in the tumour, but the nodes did not seem to be affected.

I find myself thinking this is just a short interlude before my stage 4 diagnosis. I feel very unhappy and like I will live in the shadow of this beast forever.

I feel forced by others to pretend it's not coming back. I am finding it hard to interact with others and heart breakingly I'm finding it difficult to enjoy my time with my daughter.

My husband is forcing me to return to work, but I feel like it's just a waste of my limited time at this point.

I feel like at the stage I am at the beast almost always returns. What do others think?

Lucca06

Hi libby2002, the early days/months after treatment are tough but it gets easier to not be overwhelmed by what happened. The answer to your question is yes! I was 43 when diagnosed and had two very small children. I'm 9 years from diagnosis on the 23rd of this month, stage 3, huge tumour, neoadjuvant chemo plus also got told 1 node prior to chemo but after chemo & then mastectomy I was told 9. There are lots of ladies on this site who are doing well and lots more who don't post as they are busy enjoying life.

The best advice is to literally take one day at a time and focus on being as healthy & well today as possible. It was the only was I could cope with the fear of the future. Gradually as I felt better & stronger, I thought about the cancer less & less. Some counselling helped too, to deal with the trauma of the diagnosis. Today I am fit, healthy & happy and feel really positive I will be here for a long time!

Stage 3 definitely isn't the end. Take care.

exbrnxgrl

libby,

You have a choice to make. You know the current state of your bc. Does that warrant putting your life on hold waiting to become metastatic? How long are you willing to do that for, a month, a year, five years? Will you spend that time consumed by fear of what is to come or perhaps start putting one foot in the grave? Or, will you do the best you can to stay healthy and then go about enjoying your life?

No one has a crystal ball, no one can predict if you will have a local recurrence, become metastatic or have no further problems at all. I have been stage IV for 8 1/2 years. I teach first grade, enjoy my family and friends and look at what I can do to enjoy life. I can't imagine how poor my QOL would have been if I had spent the last 8 1/2 years getting ready to die. I would have missed some incredible times. Again, you are not stage IV, it's unknown if you will ever be stage IV, so, assuming you are physically well, don't put your life on hold waiting for the worst case scenario to materialize Take care.

Spookiesmom

Eight years ago, at the first dx, I was stage 3, grade 3. I was told I was high risk for recurrence. I went on about my life as normal. Sure, the thought was always around, but not all consuming. I didn’t, and still haven’t made any end of life plans.

This time last year, it came back. Did surgery and rads. Currently on ibrance/letrozole. As far as I know, I’m NED. If I have progression there are other meds I can try. Do I loose sleep over this? No I live my life as best I can, doing what I want, when I want. I have a few other chronic issues, all of which could kill me. I manage them, but don’t worry about them. Around here, I’m more likely to get run over by a lost tourist. THAT scares me.

MinusTwo

Libby -Stage THREE? Good heavens, I can't imagine anyone on this thread giving up at stage 3. At first I thought I read this wrong and you meant stage IV, which of course is more problematic. But many stage IV people live for MANY years. Then I read your details which show Stage 2 (two)

Did you have surgery? How else would you know that 95% was killed? Why didn't you have radiation to mop up the possible random rogue cells? The beast does NOT always return. Hundreds of women have been on these boards with stage 2 & stage 3. After treatment, they get on with their lives and never come back. There are even several threads for 10 year survivors, etc.

I suggest you talk to your doc about getting some meds for depression. Also maybe a therapy group. Yes, we all worry. Sometimes we see every new ache & pain as "cancer again". But it rarely is. And you shouldn't have to live with these feelings. Please call your doc.

MinusTwo

Libby: I'm copying this post from another thread. This is a lady who has been living with Stage IV for 5 years. I think her advice might be useful.

>>>eventually I made "get busy living or get busy dying" my mantra and have gone on to live a pretty happy life.

As you work through this period, don't be afraid to ask your Dr. if you feel anti-depressants or anti-anxiety meds would help you. It can be difficult to find the right drug for you, so if one doesn't work well, ask to try something different. I found counseling sessions to be helpful too. You can say things there you might not want to express to those close to you.

dibel

I went 14 years before it came back. I had completely stopped thinking about it.

beeline

Hi Libby, I am also stage 3 and while I didn't have neoadjuvant chemo, I did go into surgery being told it was a small tumor with no node involvement only to then find it was in 10 nodes!! I am more than a year and a half out now and here to say it does get easier -- but also give yourself a break and do what you need to do to feel better at your own pace. Don't let your husband make you go back to work if you're not ready, but also don't give up on life! Definitely give an antidepressant a try. I was very against the idea, but eventually gave in because I couldn't take the hotflashes on tamoxifen so started a small dose of effexor. It made a huge difference. I took it for about 6 months and have now stopped and haven't had that terrible depression and anxiety come back. It is worth it to enjoy the time with your daughter! (I have two, ages 5 and 7 at diagnosis.)

I highly recommend reading the Stage 3 "5 years and out," "10 years and out," and "15 years and out" threads. They are super inspiring. I also saw your question about 4 nodes vs 3 nodes and wanted to say 2 things. One, as I'm sure you've read, it is rare for HR+ cancers to have a complete response to chemo, and, two, that it is a somewhat arbitrary cut off. If you try one of the online calculators like NHS predict or cancer math, you will see that there is only a small difference between 3 and 4 nodes in terms of prognosis. For me, if I had only 9 nodes, I would be a stage 2A under the new staging guidelines, but because I have 10, I am a 3C which sounds much worse. But if I plug those numbers into a calculator, my odds are basically the same. It is also important to ask your MO because it is different for everyone.

There are lots of wise women here who have been around much longer than me, so I highly recommend continuing to read and look for support here.

libby2002

Hi guys. Thank you so much for your helpful & heartfelt replies.

It has been very difficult for me. My daughter was 7 months when I found out. I love her and intensely loved motherhood from the second it started. I really want a second baby and when I think about what I want to do with these (possibly) limited years all I want to do is be a mom. It is hard thinking that has probably been taken away from me. I am looking into surrogacy, and egg donors (as I didn't have a chance to collect my eggs before this happened) but I obviously need to be in a much better headspace before I do anything like that.

I actually spent a month in November in in-patient psych, because such is the depth of my despair. I was doing better but I have started overthinking my predicament again, and thinking about a second baby some more.

I appreciate all the support here and hope I can get to know some of you more.

libby2002

@exbrnxgirl - that is so wonderful that you're doing well and teaching first grade. I actually taught for awhile, JR. high. I was never able to find my niche though. Always wished that I had gone for a younger grade.


@dibel - did you have a local or distance recurrence


@lucca06 - thank you for your response. It is inspiring to me that you are doing so well after also not having a wonderful neoadjunctive chemo response. Were you highly er+ pr+, also are you now on hormonal therapies?


@minustwo - we thought it was stage two but after surgery upgraded to stage three. I think it sort of teeters on the edge between the two.

MinusTwo

libby - As you see, I'm stage 3 and in year seven. You have to adjust your goals to one day at a time. Every day is a new day. Be thankful for your little one and enjoy each milestone with her instead of worrying about another one. Please considering getting medication or adjusting it if you're taking something now.

libby2002

Thank you for your concern @minustwo.
I have really been struggling, and I am on Effexor as they have told me it's the only med that I can have with the hormone meds.

It kind of works I guess ?

beeline

libby, if you’re on tamoxifen you’re right Effexor is one of only a few that are ok. Another is celexa which you could try or increasing the Effexor. I think there’s one more but I’m blanking on the name.
The other thing to talk to your MO about is if ovarian suppression and an AI might be a way to go. There are definitely drawbacks in terms of side effects, but it is a bit more effective than tamoxifen and there aren’t the same restrictions on antidepressants so you could try a bunch of different ones if needed to find the right one.