New to group, but not new to BC :(

ali_lpn

New to group, but not new to BC

ali_lpn

Hi ladies!  I was lucky enough to stumble upon this website when I needed it the most (during another sleepless night).  I was originally dx in Aug 05 and had a right mastectomy, 12 weeks of chemo and 6 weeks of radiation.  My oncologist (at the time) gave me a script for tamoxifen and basically made it sound like it did not matter one way or the other if I took it.  He said it would only prevent recurrence by 20%.  After researching it, I decided not to take it basically because I was sick and tired of being sick and tired.  I was only 32 at the time and felt like I was 72 during that time period.  NOW I wish I had taken it.  About 7 or 8 months ago, I noticed a few little lumps on my reconstructed breast, but I needed a replacement implant because the radiation had hardened mine.  SO, being the procrastinater that I am, I put it off until I had a rock hard breast with lumps and an ulcer (I know how horrible that is, but I have a huge fear of the unknown I guess).  I finally went to my plastic surgeon because I had convinced myself that my implant had burst.  She immediately sent me to my breast surgeon who immediately sent me to a new oncologist.  I am in a phase III study receiving Avastin/Taxol 3 weeks on, 1 week off.  I have mets to the bones in my hips, lower back and pelvic area.  I also have mets to my right lung.  They also found a large node in my left axilla.  The first go around, the CA was in my  lymph nodes under the right arm.  I had 22/30 + nodes.  I know that I did this to myself.  I am a nurse and I know better.  Thank goodness for my wonderful family and girlfriend who never once said, "I told you so".  I started my second round of chemo on May 1st.  I had my week off last week and felt worse that week than I did the weeks that I was doing the chemo.  I figured that was because of the steroids.  Anyway, I happened to find this wonderful website and appreciate you ladies so much for being so honest and telling your stories.  I really relate with most of you.  It helps a lot.  My big problem right now is that my hair is falling out.  It was tramatic when I lost my hair the 1st time and I was just starting to like the way I looked and now I am losing it again, big time.  It is to the point where I need to just get rid of it because there is hair everywhere and I hate that.  I just can't bring myself to do it though.  It is even more tramatic to me this time.  I know it seems shallow, but I hated being bald last time and my oncologist said he doesn't know how long I will have to do chemo so I could be bald even longer this time.  Anyway, a HUGE thank you to you brave women for letting me know that other people do this 2 or 3 times, so I can too.  You are all in my prayers.

Ali

smithlme

Ali,

I am so sorry that your journey has taken a detour...translation...this sucks! I am a triple negative and have been diagnosed with BC twice, barely a year apart. I went through chemo the first time, but this time it was early DCIS and I don't have to have it.

Losing your hair once is bad enough. I couldn't imagine losing it twice. If you choose to shave your hair, it is totally up to you. Losing mine was so traumatic for me. It was such an overwhelming, defining moment, for me. Being bald and wearing scarves made it obvious to all that I was "ill." Take good care of yourself and let us know how you're doing. We're all here to listen...

Linda

cp418

Sending you hugs and so sorry to hear you are going through this misery again.  Stick with your new docs and take each day one at a time. Joann 

Ivylane

Ali:  So sorry you are dealing with this yet again.  Don't beat yourself up over the Tamoxifen (or lack of).  It may not have made a difference anyway.

I was also dx'd with BC twice and I took Tamox the first time, plus chemo plus rads (after a lumpectomy).  15 years later I got dx #2....hang in there. 

As far as the hair loss, I think that maybe once you get rid of what's left on your head you may feel less stressed about it.  I've been there, and once I was bald I didn't have to look at the hair loss every day.  Get yourslef a couple of cute hats and know that you will see hair again when treatment is done.  Good luck Ali, I'll be thinking of you

ali_lpn

Hello Ladies!

I had chemo and an appt with the doc today.  He was so pleased with the way my breast looks, the tumor are still there of course, but are much smaller...thank goodness.  He also told me that the CA is in my both of my femurs, which I did not know...I was pleased with his being pleased though.  I did shave my head...it's just hair right?   

We are having a hard time getting my pain meds right though and that kind of sucks because the insurance won't keep paying for changes every week.  I just had to pay cash for a new script because they would not pay for it.  Luckily, it wasn't more than I had, but it could have been then I would have been out of luck.  Anyone else have this kind of problem, with getting it just right?  I'm hoping this combo works to at least take it down to a dull ache and make it tolerable. 

Thank you all so much for the nice responses.  I wish I had known about this site the first time around when I was so horribly sick.  You are all in my prayers.

Ali

SueG

Hi Blue16

 It is some months since you made your post but I was attracted to it because after 14 years disease free I am now facing my second diagnosis.  I had a mastectomy nearly three weeks ago and will see my oncologist next week to determine appropriate systemic treatment.  I am ER+PR+ and Her2-.  Tumour was 2.2cm this time with lymphatic invasion.  No lymph nodes left to take so no staging available there.  I got away with surgery/radiation and tamoxifen last time but I suspect the dreaded chemo is on the horizon now.  Drat!  Just grew my hair too! 

If you are still around drop me a line if you have time.  Would love to hear how you are doing and any other long term survivors who are facing this horrible disease again.