anyone HER2+, er and pr-?

smbc09

Hey there everyone! I am currently in the hospital for pancytopenia due to the chemo and am sooo frustrated with everything. It seems at times that everything I have gone through as a patient isn't worth it. Physically I am exhausted but I expected that, however I wasn't ready for the mental and emotional roller coaster. I work in healthcare and see all sorts of patients, some terminally or traumatically ill or others not sick at all, but now that I am the patient I am losing my faith in the system. I try to keep reminding myself this is for longevity and not immediate health. I, for the most part, have been a compliant patient, none the less things just seem to keep getting worse rather then better.  First it was just a lump that didn't even hurt, which led to the cancer diagnosis, so I had a port inserted in preperation for chemo. Then there was a complication with the port so that delayed chemo and I ended up having to get a whole new port on the other side of my chest. Finally chemo started and was supposed to last 3 months (6 sessions). Which was going to be followed by a year long regimen of Herceptin. Unfortunately my cancer didn't agree with that plan and decided to take up residence in more of my breast tissue (luckily still just my breast) which was caught during a mid regimen check up. Okay I can handle it, right. Hmph! Plans changed and my team, myself included, decided it would be best to prolong the chemo, doubling the number of sessions to 12 and length of time to six months. It has been five months now and I am beyond ready to be done with it. I have been admitted to the hospital so often lately that they should just save my room for me in anticipation I will be back. No matter what I do right now it seems as though it is a losing battle. I have tried to keep a positive attitude through all of this and I am just at my wits end.

I apologize for going on and on, it could be far worse. I guess I am just scared that the chemo is going to end and the cancer is going to come back, as I've been informed it most likely will within 5 years. Then I will have to go through this all again, and that I don't know that I can do. How do those of you who have gone through this keep your head up?

jill323

smbc09 -

Hello.  I noticed that you posted several hours ago and no one had responded - and I thought to myself, well even if I could not lend too much in terms of like experience, at least I could reach out to someone in the hospital going through all this crap.   I hope you don't mind a sympathetic ear. 

The one way we are "alike" is that while my signature line says ER+, it is very weakly "+" and my doc has been treating me as if I were ER/PR neg and Her 2+ (and the Her 2 positive part is very strong).   I completed chemo in December and radiation just a couple weeks ago.  I am now in my herceptin only phase.

Well... I have to admit, you have been through the gamut.   But, even through all your discouragement, I see signs of strengh with words like "I try to keep reminding myself this is for longevity and not immediate health".   While I don't even pretend to compare what I went through with what is currently happening to you, that is how I got through the rough patches - keeping focused on the end game - which is kicking this thing's butt.   You can tell I am a bit competitive.  For me, I simply cannot let this thing win.   It gives it too much credit and I have too much going on good in my life to let it win.   So.. if staying "positive" doesn't work, then get mad.  Sometimes directed anger might be just what the doctor ordered. 

As for your note, the part that got to me was that you were "informed it will most likely come back within 5 years".   In general, if cancers come back, there is a higher statistical probability it will happen in the first five years.  However, were you told something specific about your case that suggests it WILL come back for sure ?     If not, then don't let it become a self fulfilling prophecy.   One step, one day at a time.  

In the meantime hang in there.  Get through this immediate crisis.  You have come too far and been through too much to let this thing get you now.

Take care, and I hoped this helped even a little.

Jill

otter

smbc, there is a whole forum on these boards for women with HER2+ BC.  It's called "HER2/neu Positive Breast Cancer."  That would be a good place to find others with your diagnosis.

I'm a bit confused by your treatment timeline. I read your other posts and your biography.  Maybe you've left some things out.

You didn't mention anything about surgery or radiation, except to say that you weren't having a mastectomy.  You said the plan was 3 months of chemo and then a year of Herceptin.  I'm assuming from your signature line that you've already had a lumpectomy and sentinel node removal--is that correct?  If 2 of 3 nodes were positive, didn't the surgeon check the rest of the axillary nodes (with axillary dissection)?  How about radiation treatments--do those come after you've finished chemo?

Sorry--I'm just curious.

otter 

Brenda_R

Have you had any surgery yet?  I'm just curious too. I had a large lumpectomy first, then chemo for 3 months, then 7 weeks of rads, and then 1 year of Herceptin. Overall it took me a year and a half to finish active treatment. For us Her2 gals, the first 2 years after active treatmnet are the riskiest ones. Of course they still go with 5 year timeline, but I'm not quite 1 year out from active treatment and my onc acts like I'm totally cured and shouldn't worry about it at all. I think there's a lot of difference in doctors and how they "treat" patients.

smbc09

Sorry for the delay! I did leave info out in my previous post. There were multiple biopsies, a couple of surgeries, and various other exams that took place in the middle there I just didn't take the time to type about them. I am feeling a little better these days, thank you to everyone for your assistance. "Luckily" the cancer spread to my mammary lymphs only and not to my axillary lymphs and there has been no spread since. Hopefully only two more chemo sessions left, before the next step! : )