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

Michele54: What JudyO said... I think we've all been where you're at, reeling with fear, uncertainty and doubt. But it's true that once you get the specifics about YOU and YOUR case and get a treatment plan in place, the fear, uncertainty and doubt are replaced with hope and determination, a much better place to "be"...  you will get there too...  nothing is for sure, either good OR bad, so please try to take it easy on yourself, take only ONE step at a time, and take heart that no matter WHAT, there is so much more hope now than there used to be, thanks to many brave women who have paved the trails we now tred...  Hang in there... 

Michele54: good for you...  and don't worry too much about the pain either...  it's more like annoying discomfort and drugs do help!!! Don't have a port so can't speak to that... not everyone needs one...  take care... 

Michele, please don't jump to any conclusions about anything until you have all your tests, talk to your team of drs.  I also had ILC had rt mastectomy and chemo.  I wish like Marsha that I had had both removed at the time but just didn't have enough information.  After 4 years of being lopsided finally had reduction and silicone put in.  I promise when you get all your information and get a plan in action you will feel better and more in control and please remember none of us come with an expiration date.  gentle hugs. sherry

Michele54:

Try to take one day at a time. The first part of this journey is one of the hardest.  Seems like every time you turn around you get confusing or bad news. Eventually everything is in and you can start deciding what you want to do for treatment.  You never know if you make the correct decision, you just make the best decision you can at that time with all the information you have. It is doable but sometimes you think it isn't. You will surprise yourself and don't expect to make it through without lots of tears and anger.

As for a port, I love mine. I am 17 months out of chemo and still have mine that I have flushed once a month. Ports save your veins and most people have excellent luck with them. I had a unilateral mast with no recon and had less pain with my mast than I did with the excisional biopsy.  Snowbird is right about drugs helping a lot too.

Hang in there. Once all the information is in get a doctor to answer all your questions. Write them down, ask them and write down the answer before moving on, take someone with you to appts, get copies of all your reports (even if you have to pay for them), put them in a 3 ring binder with tabs to separate the sections. I know it doesn't seem like it now but you can do this.

Best wishes as you travel this road. Come here for support.

Wink

I agree with everyone, once you start doing something it feels better. I had one boob removed and other than the bother of the drain bulbs it wasn't very bad at all. I made sure I rested as needed, ate good meals and did some excercise. I had a port put in for chemo. I thought it would be a major thing but my son came with me and after we went out to get something to eat. It really made it easier to get chemo and have the blood drawn. I know people can have the ports block up but I think this is not the norm so don't worry about that. If it happens they will deal with it. I had my port removed a month after I was done with chemo. I am one of those personalities that feel this is a bump in my road of life and any reminders get kicked out as soon as possible. I am not sure if they will do the chemo before surgery on you. Some times they like to get the size down. Chemo before can be a good thing in that they can see if the chemo is working for you by the changes in the tumor size. I did dose dense (this means they give it to you every 2 weeks instead of 3) AC and then taxol. There are many differrent chemos being used so take time and research the option they give you. I didn't have problems with chemo. I think I was more frightened by the what if than the actual thing. It is scary but it goes by quickly. Make sure you don't rush this to much, I think I did and now regret some of my decisions. I am looking at getting the second boob removed since I have had some pain in it recently. I personally should have had both done initially since I am one of those constant worriers. I would not wish all of this on my worst enemy but I believe we must deal with it the best way we can. I tell myself if I am to die tomorrow would I be happy at how I lived today....and if I live for many tomorrows I don't want to regret how I wasted today. Try to keep that in mind.

Hi Michele,  I know it's hard to positive, but try your best.  I read my Bible and met with my Priest while I was waiting to get all my results.  God is always with us.  Put your Faith in Him right now & let Him carry your burden.  It was very hard for me too, but worrying won't help.  You are doing the right thing.  Coming to these boards and getting to know all the helpful ladies on here.  There are also some wonderful/positive prayer & inspirations threads that may help you settle some of your worries.  My prayers are with you!

OOPS, forgot my funny for the day for you Michele:  When I went in to have same day surgery to put my port in, I left a note taped to my chest, above where the port was to go, that said "Beer tap goes here" with an arrow pointing to the spot.  The prep nurse let me leave it there for the surgeon to find.  They said he just rolled is eyes and kinda snorted.......

Hey Michele, haven't heard from you today and wondering how you are doing.  Isn't your appt with the onc tomorrow?  I'll be thinking of you and sending you all kinds of positive thoughts and vibes.  Take someone with you so you don't miss anything.  I remember my head was doing one of those woo woo woo things like I had water in my ears.  Some even take a recorder with them.  Check in when you get a chance.  Marsha

Michele, Stage IV is just Stage IV. But I would think it's better to have fewer spots, as that would indicate a lower tumor load. There is debate among oncologists as to whether it makes any difference in overall survival as to when mets are detected, which would imply that it doesn't make any difference whether you treat one spot or a hundred spots. But logically, it seems like mets would be easier to control if there are fewer of them.

Hi Michelle,

I know it is hard, but try to wait until you have a more definitive test like a PET/CT (don't forget to ASK for one when you see your onc).

I will tell you a little story - 5 years ago I went to the doc because of bad reflux - she thought it might be my gallbladder but sent me for an abdominal ultrasound. Found nothing wrong with my gallbladder but did find a 6 cm tumor on my right kidney! Was sent to a urologist who then sent me for a CT scan. From the CT scan he told me he was 99.9% sure I had renal cell cancer. I was a basket case. I didn't have any of the risk factors for kidney cancer. I didn't want to believe it so looked up on the internet benign kidney tumors (just to see if there were any) and decided that was what I had. When I mentioned it to the nurse when I went to for a pre-op appointment she looked at me like I was crazy and muttered under her breath something like "in your dreams". Well guess what, I had my kidney removed and when the doctor got the path report back he was stunned. I had a very rare benign tumor that looks just like renal cell on imaging. So I guess what I want to say is - wait until you get all the information before you get all worked up.

Like others have already said, relax and take a deep breath. Will pray that your onc visit goes well and that you can get a PET/CT soon to put your mind at ease.

Hugs,

Suz

Dear Michelle,

We are all waiting for a message from you today! Hope everything went ok and you have some information or appts. Don't forget to come back here where you can get all the hugs and support you want!

 Peggy xoxxo

michele54:  Just found your post today and can relate.  First, so glad you are feeling a little better!  

I have ILC that is locally advanced.  I am 56 and my tumor size is 10, had one node pre-chemo that was enlarged, had my chemo up front and just had a mastectomy - waiting for pathology report.  I had some things come up durning a bone scan too, but as it turned out just due to degenerative disks in my spine.  

A big help for me, using my sense of humor.  Trust me, I found humor in the most surprising places!  It helped me get through!  Again, so glad you are feeling a little better!  Wishing you more "feeling better"!  and LOTS of Good News!      

Michelle - I have ILC and pre-surgery my tumor was estimated to be twice the size it was.  Please just try to take it one step at a time.  I would get myself all worked up over the what-if's and you just can't do that with BC because you won't know everything just yet.  Hugs.

MIchelle,

I met a woman at an ACS event who was diagnosed with ILC 10 years ago.  They gave her 2 years to live.  Did you catch that I met her just a month or so ago?  She still shows no evidence of disease! 

I too have had things show up on tests, and that ultimately leads to another test, which leads to a tie breaker test.  It is not unusual at all to have things show.  Since you have breast cancer, they will error on the side of linking it.  I can also tell you that when I was diagnosed I thought it had spread everywhere.  My eyes, my chest, my bones, my liver, anywhere I heard that mets go, I was hurting there.  I would wake up saying my liver was hurting.  I was sure I had at most 2 years to live (isn't weird how 2 years pops up?).  I started returning things, giving things away, etc. My scan summary ended up similar to yours - arthritis, hernia, etc, little things I never knew about.  Another thing that happened, was a few days after my diagnosis, a plane went down in Spain and many people died.  Those people likely thought they had plenty of time.  It was a reminder to me that none of us know when we will pass from this world.  It will happen to all of us sometime, but we don't know when. Live your life.  Focus on what you know, not what you don't.  I remember some days thinking, well this may kill me, but I don't think I'm going to die today, and would just get on with the day.