Help please -how did it get this bad & don't know what to do.

Hi Michele,

When I found my lump -- at first I thought it was a cyst since it grew and shrunk along with my monthly cycles.  It didn't hurt -- silly me not knowing that cysts hurt, cancer sometimes doesn't.  It was diagnosed as ILC that was extremely sensitive to the levels of estrogen in my body.  Go figure... And finding out about mets is the shock of a lifetime.

What worked for me was getting my treatment plan -- I finally felt in control, taking charge.  Also, working as much as I could, hanging out with friends, doing my normal things, was my way of saying f-you cancer, you can screw up some things but you aren't screwing up everything! 

Any little treat I gave myself was me thumbing my nose at the cancer.  I found strength some days that made me proud.  When I broke down and bathed in self-pity I felt like crap but I kept thinking I had every right to feel like crap.

Many women, myself included, focus on others instead of themselves.  Now is the time to put yourself higher on the list.  I cannot emphasize this enough Michele.  Visit the Mets and Recurrence Board -- you'll find that us mets girls can be around for quite a while, and you will get lots of support from all the boards.  The women here will throw you a lifeline of support, I don't know what I'd do without them.

I wish you all the best,

Elizabeth

xox

Michele - so glad you have a tentative plan.  You will love the port.  I loved mine.  Now is the time to get some rest and prepare for the fight.  You can get through this.  I know we all have tips on how to get through chemo etc.  I have a list and will be happy to post it if you'd like.

Hugs

Liz

Michelle54, with regard to the medical world automatically knowing the difference between cancer in your bones and arthritis in your bones, don't count on anyone "knowing the difference" right off the bat. It seems (in my experience with ILC) that no 2 pairs of eyes will necessarily look at (or interpret) your results the same way. I've been told I have lobular, tubular, tubulolobular invasive carcinoma. Iv'e heard it is both invasive and in situ, strictly invasive, more insitu than invasive and everything in between. Post lumpectomy, I had clear margins, questionable margins, positive margins with lymph node involvement being macro involved, micro involved, fairly well established in the node, bad cells inside as well as outside the node, only a minimum degree of involvement....all depends on who you ask I guess. I could be stage 1A,1B, 2A, or 2B, maybe even a 3! Take your pick! Hang in there

michele54....all the good vibes I can pull together are coming your way right now...I went through all of this test stuff and know that it is so very hard....I even get nervous when I think about the tests that I will need in the future....my very best wishes for the very best results tomorrow...JudyO

Good luck tomorrow Michele!  The breast cancer docs at Penn are fabulous; you will be in good hands.

Michele:  I'm praying for you now as I write this.  I have ILC, Stage IIIA with 3 tumors in left breast, the largest being 8.5cm, and also had more than one lymph node involved.  I also had MRI, bone scan, cat scan, chest x-rays, mammograms, biopsy, etc.  It's exhausting.  Now I just kind of lay there and think of the beach!  Anyway, hold on to hope.  You are not alone and try to find all of the success stories that you can.  I was diagnosed in Oct. 08, started chemo immediately.  I contracted pneumonia in December and spent a week in the hospital.  I was really sick.  On Jan. 7 09 my doc said he didn't think I had responded to the chemo as well as he had hoped and it was time to have surgery.  He sent me for an MRI.  The MRI shows that the tumors and lymph nodes are all gone.  I went to the breast surgeon on Feb. 7 and had a follow-up digital mammo with magnification and an ultrasound.  Same thing, no tumors or nodes.  I'm having bi-lateral mastecomy on Feb. 23.  SO, why tell you all this?  Because you need to know that there is hope; that you are not alone.  You will get through this and be stronger for it.  Then you will be able to share your strength with someone else.  It's okay to cry too.  I can't stand it when people tell me "You have to stay positive."  Yeah, right.  All of us here know that our cancer could return or metastasize at any time.  Some days you just can't be positive.  Those are the days I pray the most.  But we learn to take it one day at a time.  Get the book "There's No Place Like Hope".  You can find it on Amazon.com or just about any bookstore.  It's terrific, and you will be able to relate to it's message.  Another good one is "Cancer and The Lord's Prayer".  Fantastic book!  God bless you, hang in there and remember we're hanging with you! 

Michele,  gentle hugs.  All this is so stressful.  You can vent here anytime you want.  Don't give up hope. 

Hugs

Liz

Michele, I know this is torture, waiting and not knowing, but when you first came on it sounded like they for sure thought it was cancer.  Now it sounds like there is ALOT of doubt.  That is a good thing!  There is a very real possibility that this will turn out in your favor.  Doen't make the waiting easier, I know, but you still have hope that you are dealing with contained breast cancer!  Hang in there, Marsha

i have read all the posts concerning you michele, and i see some of the girls know where you are going to be treated and have all the confidence in your doctors. this is especially improtant. I wish for you peace and hope you will be able to relieve all the anxiety you may have right now even if you need some help like zanax or something like that.  my doctor ordered alprazalem for me when i was feeling overwhelmed.  i think they are doing the right thing by testing. Its better to catch the problems right away and then you will be closer to the cure.

After I was dxed w/mets-

I did not have surgery (thats to keep from spreading, which it already had). Onc said I could if I really felt the need to but asked to hold off for 6 months so he could see if treatment was working.- it is easier to moniter the activity of the cancer ie whats the primary mass doing- getting bigger/smaller etc than trying to moniter the spine mets.  It doesn't bother me so I never got around to surgery.

Because I am highly er+ we decided to go with AIs (I am on Femara) first.  Since I was not post meno, I get injections of Lupron to shut down the ovaries and take the AI. You can also have oopherectom, both do the same thing.

We decided to hold off on chemo and herceptin (I am low her2neu+) and save it for the time when AIs don't work.

JUST REMEMBER THAT CHEMO AND SURGERY ARE NOT ALWAYS NECESSARY!

PLEASE pm or call me if you want to talk or have questions.

Elaine

Michele,

From your path report, do they think the tumor is fast growing?  They say that most tumors have been there for years, so it is unlikely that this wait will have an impact in the bigger scheme of thing.  The benefit of having a surgeon who knows what he is doing is worth it.  My thought is that if the radiologist had agreed, it would be shocking (smile).  I've rarely seen two doctors agree.  Try not to worry about it, and take comfort in knowing that there is an experience radiologist that doesn't think it is cancer.  That's big in my mind as most radiologist are very conservative and with your diagnosis will consider anything that looks like it could be worth checking out further.    Easier said that done, but the reality is that you have done all you can do for now.  There is nothing more that you can do.  You are scheduled to have it examined further.  At this point, you are not stage 4, and to be honest, it looms out there for all of us.Try to put it out of your mind for now, as there isn't anymore that you can do.  Sound impossible?  It isn't.  Just a little background, my son was diagnosed with leukemia when he was 4 and relapsed when he was 5.  The first time, I worried myself sick with not sleeping and doing all the "what ifs".  Didn't help, but did make it hard for me to take care of my son.  So when he relapsed, what I would do is have a set time of the day, where I would allow all those what if feelings to set in and really cry/scream whatever I needed to do.  But then, I'd pick myself up, take a shower, put on happy clothes (bright colors), and got on with things.  If thoughts/ideas came up during the day, I'd just say, well I'll think about that tomorrow during my scheduled time, but not let it consume me at that moment.  It worked for me, you may want to try it.  We are all different and that was a way that I used to stop the thoughts from consuming every moment, was by giving them their own scheduled time.  I slept at night with the thought that I had done every thing I could for that day.  There was nothing to be done.  My son was alive, so I would sleep.  For you, before you go to sleep, remind yourself you have done all the things you could for the day in your fight against cancer.  Put those thoughts to be and then try to do an "inventory" and release all your muscles starting with your toes.  It sounds funny, but as I would start with my toes, I would sometimes find my legs tensed or shoulders, etc.  Didn't even realize it was happening until I stopped and thought about each muscle and whether it was relaxed.  Then do so me deep breaths with the knowledge you have done what you can do.  May not work for you, but can't hurt to try! 

Michele,

It's been awhile.... how are you? 

Hugs

Liz