Nursing mom, age 41, aggressive Stage III, what the f*#k??

Hi Santacruzmommy-Welcome and Sorry you have to be here. You will get lots of good advice and support here on these boards. I dont know much about HER2+ or FEC but wanted to let you know i read your post and wanted to send you a big hug., The boards are slow right now, but i know many will chime in here soon.

You are in my thoughts and prayers.

Hugs,

Debbie

SantaCruzMommy, like Cathy and Debbie (and others who will be along to say hello), I'm sorry you had to find us, but also glad you did. You can count on the wonderful members here to share their insights and experience, and give support and hugs.

Also, the main Breastcancer.org site has 6000+ pages of searchable information about treatments, medications, nutrition, the emotional side of dealing with this wretched disease, and much more.

Judith and the Mods

I also want to let you know I hear your fear and sorrow over this dreadful disease.  I am now 16 months since diagnosis.  I feel well physically.  You will get through it.  I think it helps to have people who understand what you are going through.

Hi SantaCruzMommy - I was also diagnosed at the end of June with Stage 3.  Also have young children - 7, 5 and 2, and live in Oakland.  Maybe we should plan some kind of northern CA get-together!

Hi There,

I just want to say that you are not alone. There are many mothers on here like myself who also have small children. I agree with you that this disease is total crap. We have Herceptin and it is our miracle. I am wishing you all the health and wellness you deserve. Feel free to message me on anything! Lots of love!

Popping in to add my welcome!  Sounds like your onc is very proactive.  I was diagnosed at 42 and my son was 8 at the time.  Was a crappy year, that's for sure...but i think the kids help us live as normally as possible in order to keep their day to day routine normal.  I know that helped me get out of bed some days when all I wanted to do is wallow.

Sorry you had to join us....but we are a great group.  Come here often to vent..we get it like nobody else does.   

Just welcoming you here too...I was 40 when diagnosed.  I was not a nursing mom but my kids were 4, 6 and 8.  Same as you-healthy, always someone who felt lucky, happy, etc.  Was not someone who needed a wake-up call. 

That was over 5 years ago.  Stage III is very scary.  We all understand!

Welcome and I'm sorry you've had to join us here.  It sounds like you have a great attitude and that will be key in getting through this.  I have two small girls as well (youngest was 18 mths at dx.) and they are my motivation to keep fighting & survive.  I'm so happy you found a great onc as well.  I hope you find great comfort in this website and come here when you need to.  It has been so good to me and I would have been lost without it at times.  Sending you huge welcoming hugs.

Take one step at a time right now SCM,  don't try to get too far ahead of yourself i.e. lyphodema.  Hopefully that will be a non issue for you in the future, but after your surgery you should get fitted for the arm sleeves (insurance should pay for them) especially if you fly frequently (or at all---I don't and am always thinking the next time I fly I'll probably forget to wear mine lol!).

I know what you mean about looking foward to the surgery though.  I wanted mine GONE the very day I found out it was cancer.  Waiting sucks.

Take care,

Sharon

Hi Santa Cruz.  I wanted my surgery over with SOOOO badly when I was waiting, and I didn't even have to wait through neoadjuvant chemo, surgeon thought she could get it all without that.  I also had a BMX.  It's a long story, but I had a big invasive tumour on one side and ended up with some in situ disease on the other, so I'm  glad I did it.  That was 71/2010 and I would make the same decision in a heartbeat.  

I was extremely scared of developing lymphedema.  I remember my surgeon specifically saying she didn't think I would (I am slender and fit), but I did.  I caught it early.  It improved with treatment and is very minimal and manageable now.  I really hope for your sake that you don't develop lymphedema, but even if you do it doesn't necessarily mean you can't be active.  I play all sorts of sports, work out, carry my preschoolers around, etc.  Honestly, if I were a heavier person, it wouldn't even be visible now.  With the right kind of preparation and treatment, the lymphedema doesn't get in the way.

There is a great group on the lymphedema board of this site, with a couple up-to-the minute informed women frequently posting on it, Kira and Binney.  There's also an excellent website about lymphedema and related post-treatment problems:

http://www.stepup-speakout.org

One of the areas of investigation right now is how to catch it early, and if doing that can actually reverse lymphedema.  Also, there are steps you can take that may reduce your risk.  Do the exercises the surgeon gives you, but be mindful of any restrictions on range of motion early on. The lymphatics are delicate and need some time to heal.  Early compression may also reduce the risk.  Seeing a certified lymphedema therapist as soon as you can, whether you have lymphedema or not, can also be helfpul getting through recovery from treatment.  And I second KerryMac - exercise is great in so many ways.   

Early in treatment, I was scared out of my shoes about the cancer and about the possibility of lymphedema, but I wish I'd been in a better mental space to educate myself a little, especially about the lymphedema.  I may not have been as frantic if I had known it was something I could live my life with.  

I hope this is helfpul and not scary.  I feel like being stage III and lymphedema are two aspects of my cancer that leave me feeling left out of all this "early detection!" Pinktober stuff.  Nobody wants to see this or put it on their posters, etc.  But there are definitely a lot of us here, and I hope you will find good support.  We here on these boards! 

Hi SantaCruzMommy,

Our stories are very similar!!! I was nursing my 3rd when I found out a swollen lymph node.  I was about to wean him out when I found my lump.  Even then, doctors dismissed it as nothing and I was only diagnosed 7 months later.  Here I am 2 1/2 years out from diagnosis, 2 years from surgery, and doing great.  I'm treated at Stanford and live in the Bay Area.  

I also did neo-adjuvant chemo to shrink my tumor, and what had been a 12x10cm huge area of enhancement on my MRI at diagnosis (the whole breast it seemed) disappeared completely - no breast cancer cells were found at surgery in my breasts, and only a few scattered and stubborn cells remained on the lymph nodes (which were removed at surgery and further treated with radiation).  I did a year of Herceptin (had my loading dose prior to surgery) and completed a vaccine trial in July.  

There's a lot of hope for us HER-2+ gals and survivors in general.  BTW, I wanted to let you know of a great support group in the Bay Area for young survivors.  Check them out at http://www.baysnet.org/

All the best to you in your journey!!! 

Hi Santacruzmommy,   Your story is very similar to mine, I have a 5 year old and a 4 month old and was diagnosed when he was 10 weeks old, they also sent me away and thought I had a blocked duct.

I have started off my neoadjuvant chemo with FEC and it seems to be working, I have done 3 so far, I've got one more FEC and then I am doing Herceptin and Taxatore util January, then I will have surgery in February.

How do you know you have lymph nodes in both sides positive??  I have suspicions that I do to but I only had one side biopsied.

Good luck with your surgery, I am dreading mine so much. 

((((hugs))) ... as I was reading through your thread, I kept saying to myself..."I feel that way..." and you have really collected a lot of women who also "feel your way"!  So, I wanted to thank you for starting this!

Yep...it sucks a$$.  But, it doesn't have to take our spirit, personality, drive, motivation, happiness ... we just keep on keepin' on.  I am inspired by you and the women who have posted here.  I'm adding this to my favorites!

hi,

just wanted to add a hello since we are kindof neighbors, i'm in carmel valley! i was diagnosed at 44 and have 3 kids too, although my youngest was 7 at the time. i had a bilateral mastecomy and had no problems with it. the recovery was really easier than i expected. i did have an 'oncu-pump' placed during the surgery, which delivered local anesthetic to my chest via some little wire-things, and that was in place for the first week or so.....it really helped with discomfort. i think it's newish.....my surgeon is the only one using them here in monterey....but you might ask about it! i also had 11 nodes removed from one side and 4 from the other, and no probs at all with lymphedema...knock on wood. hang in there.....i'll be thinking about you..pm me any time and i'll be happy to share any info i have about local docs, etc. hugs,

christine

Hi santa for me its been a long, long road with the tissue expander in situ, and not a pleasant story for me, but Ive known others that have had no problems, at the end of all what its meant to achieve is quite OK looking, radiotherapy is a change with the skin texture over the pectoral muscle, but once you finally have the change over to the prosthesis, you will see what the purpose of it all was ! Unfortunate for me is that they inserted a larger expander in than my rib contour could cater for, so a small fold was there from day one, some days after recovery, and then new tissue grew under that fold which created all sorts of added pain factor ! But Ive been told that I was an unusual case ! Yep that sounds like me !!! I had a prophylactic mastectomy on the other side at the same time as the change over from expander, and there you can see why they do it this way ! Still no-body explained it to me, I just had to experience it in the dark.