Help me to get out of my funk!

Sissydi

Her2+ compadres......I need your emotional strength and a perspective. I've been doing a lot of reading on breast cancer, on this website and a few good breast cancer books, and can't get out of my funk on my diagnoses. Somebody on another thread made the comment that chemo doesn't work all of the time, in response to her finding a new lump. ....now my mind is telling me, well, chemo just temporarily is staving off the inevitable, that I will die early from this horrible disease eventually.



I get so much conflicting info; I've heard other women say their onc's are excited they have HER 2, then I see where grade 3 has a high recurrence rate, then I read about someone who has a recurrence immediately after finishing chemo. I do read the threads of longer term survivors checking in, and that's always super helpful to me, and I'll be fine for a while, then I'm back to the dark place again. I know this is somewhat normal for where I'm at in treatment ( I just finished TC #2 of A/C), so I'm mid treatment and feeling blue.



Take a look at my diagnoses...I'm 48. Has anybody with a diagnoses close to mine been encouraged by your onc? Mine doesn't quote stats; he says each patient is different, and he looks at each of us on our own merit. I know he can't tell me anything for sure, I know none of them can. I'm just scared.

Sissydi

Also should add that I really fall in that pretty little grey area of stage IIb and IIIa....onc says I'm technically IIIa because of one node....

Laura5133388

My onc told me that with Herceptin, my percentages were just as good if not better than those who were not HER2+.

These boards are great and full of a lot of good advice, BUT....you are going to see every bad story. Just as you will not have every single side effect of chemo, you must not envision every bad outcome.

kltb04

I could have written that post Sissy...you know I am in the same place you are (a few years behind as I am 38) so I can't offer any grand advice.  We are about the same but my dr has me at IIb and my tumor is larger.  I guess because I only have one node, but I may have more because I only had a SNB!  So who knows...the main difference is that I am ER+ but what I hear about ER- is they respond better to chemo.

 I often wish I didn't have the her2+ going on but we just have to hope and pray the Herceptin works.

You know I have no words of wisdom because I have been down too - I just tend to go up and down numerous times in a day rather than stay down.  As I posted on the chemo board this morning, I had the most disturbing dream last night...I have talked with a couple people about it so I am more comfortable talking about it now...it was like I was seeing a calander/planner but it only went 2 years out.  That was it but it was enough to really shake me up.  I know in my head it was just a manifestation of my fears.

Hang in there sweetie...PM me if you want to talk.   These boards are invaluable but I tend to spend a lot of time on here and read things that I would have no idea about had I just been going to my drs appts and taking their advice/words about how I was doing.  So I try to back off on it for awhile when I get too down.

ILBoysMom

I don't think the funk ever goes away.  I am approaching my one year anniversary from diagnosis and I still hit that lowpoint every once in a while.  I am one of the unlucky HER2+ ladies that cannot handle Herceptin.  They stopped mine at 24 weeks due to loss of EVF.  Now I just pray that what I received was enough.  Since my bilateral mastectomy and reconstruction surgeries, I have a lot of nerve pain on the mastectomy side still and shooting pains in my lifted side that have not subsided.  Every time I get those aches and pains, I think the worst.  I have a thickening area on the lifted side that they are now watching after I brought that to their attention.  I don't think about BC every minute of every day anymore - but probably at least once an hour.  My doc says that's pretty normal after having your world shaken as we have.

rozem

my onc told me the same thing.... with herceptin the odds are as good as being her-

remember, people come to these boards when they are newly diagnosed.  The vast majority of people who do well move on and don't visit again.  I suggest you visit her2support.org - great stories of long term survivors (many many with positive nodes). 

We all worry, i worry every single day (im 43).  like Laura5 said these boards are great but sometimes  you need a break.  It is tempting to look at all the stories, the good and  the bad and try to draw similarities and conclusions.  We all do it.  I give myself breaks from these boards even though i have made some great connections here because sometimes its just too much to process.  Some people can handle all this info much better than others. 

you are in the middle of chemo, i find chemo messes with your mind. I still go to the dark place but not nearly as much as when i was going through chemo

lago

Sissy there is always risk in life. Currently I'm NED and feeling great. But I could be struck by lightening tonight  (will stay far away from windows since it's going to rain this evening) or some other malady other than breast cancer… but I'm not worring or even thinking about it.

My theory is if they are telling me I'm NED then I'm NED. I'm not going to worry about what "might" happen because it "might not" happen. Do you worry about getting into a car accident? The chances of that happening are higher than recurrence for you… but you put on your seat belt. So do what you need to do to stay healthy (exercise, healthy diet and lower that stress).

In order to be a survivor you need to be living your life… not looking for mets around every corner. I know this disease is suck a boogie man. I also know that once you start feeling better and yourself again a lot of these feelings will go away. They did with me.

and remember that once you pass the 3 years NED, being hormone negative your risk for  recurrance goes way way down. Not so true for hormone positive. Also:

"Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors" source linky 

So many of us do make it. Chemo works for most of us. Don't assume it won't for you. BTW I was 49 at diagnosis… had my 51st birthday this February. I celebrated by getting my nipple/areala tattoos and made cookies for my BS office, Onc team and my PS office. THis Aug 31st will be 2 years NED. I plan on making many more batches of cookies.

rozem

karri/sissy

just wanted to add...i spoke with a 10yr survivor a few months back (stage 3, tons of nodes) and i asked her how she got past the fear of reccurance, did she question/research her doctors/treatments etc.  Her response ?  she said that going on the internet was not what it is today and she did no research, she just "did what i was told"  and as for reccurance? she said "i didn't ask and they didn't tell me "

sometimes ignorance is bliss

Sissydi

Thanks everybody....sorry for whinning!

fightinhrd123

Hey there, I had almost ur diagnosis, they think I had 4 pos nodes but i did chemo first and had complete response so who knows!  it does get easier as time passes, not gonna lie, I still think about it way too much, but its not as scary anymore!  My other friend who had same diagnoses pretty much as me at the same time is doing good too!  Hang in there!

Laura

Sissydi

Thank you Laura

Corinne6

Hi all, just coming to help.  I am 3 years out also. Doing great. My dr's told me this....Her 2 positive is better than most cancers because of the targeted therapy with Herceptin. I was also told that if you look at statistics...you have a greater chance of not getting it back than getting it back. Also told by all my dr's that if you exercise 30 minutes a day 6 days a week you have a 40 percent less chance of getting it back. I am in a support rowing group where some ladies have gotten their type of cancer back and they have been years clean without a 3rd round. I guarantee that the farther away from the time you had it you will feel better about it. I thought my life would always be fear and I would never get back to feeling good about life. That is wrong...I am doing great and you will put this behind you someday...with a little of looking over your shoulder. By the way my support group is great www.rowstrong.org If any of you are this way come join us!!

Sissydi

Thanks Corrine! Your group looks like fun! Except I'm in Florida