feeling uneasy about treatment

[penelope]

Hi I just wrote out a whole long post and lost it. Frustrating.

I am feeling very uneasy and am hoping some of you very knowledgable women can help.

In Jun3 05 I was diagnosed with 7mm er-, her2+ node neg tumor. I immediately before surgery had a CT/PET scan which was unremarkable besides the tumor in breast. So I had a bilateral with implants, went on to have 4AC and 11 months of herceptin. Last summer I had a bone scan...normal, abdominal CT scan in Oct 06....normal and a chest xray in Dec 06.....normal. In Jan 07 I replaced my implants with bilateral diep, and since that time I have had trouble around my sternum. Before the surgery I had always thought that it was just a rogue nerve, a short quick stabbing pain that came and went. Now that surgery is over it is more pronounced. It is stabbing, quick, burning at times and still comes and goes. If I press on my sternum it does not hurt, and all bloodwork is normal. But I am freaking out. I keep thinking this is mets. I do not even know what my risk of recurrance is. How would I figure it out anyway?

I have a new oncologist because my insurance changed. I have seen her once and at that time discussed my treatment with her. Although she said my prognosis was "excellent" I got the feeling that she would have given my taxol. I do not have an appointment with her for two months so I gave her nurse a call to talk about the symptoms I have been having. Her nurse said she would give me a call back and move up the appointment but she never did.

Any thoughts here ladies. Any at all?

[Mary Jo]

Hi Penelope,

No, I do not have any thoughts although the fear of recurrence is something that is real and something we all live. Whenever there are aches and pains we panic. I, too, think your prognosis is good and with all the scans you've had I'm sure it is nothing. Of course, like with anything, when in doubt it needs to be checked out.

God's Peace to you,

Mary Jo

[penelope]

thanks mary jo

[MJo]

My thought is that your chest area has been through some major cutting and stitching, and it's not surprising that you have leftover pain.

[penelope]

thanks ladies.

Does anyone know what the risk reduction of 4 cycles of AC is? How about herceptin alone?

[jener8er]

Penelope!! I wish I'd seen this post when you first posted - I have the EXACT same thing as you! And mine also started after my exact same recon as you last year! How weird is that?? I had an mri of the whole area (I also have a palpable lump that seems to be getting bigger..) in December and there was NOTHING there. I really think it's related to what they do to us in that recon surgery, and I think it takes a looooonnnnnggg time to go away. I'm almost a year out of surgery and my sharp pain still comes and goes. It's bad when I exercise too, it hurts when I breathe in deep. I'm convinced it's the recon. How is your's doing btw? Are you still happy with your results? You look GREAT. I'm waiting for yet another surgery date from UCLA to finish mine up once and for all. I just want to be DONE. Anyway, I hope you're doing good, and I wouldn't worry about the weird aches and pains, I'm sure it will get better eventually.
Jenny
PS One thing that I remembered hearing at the conference was that when cancer decides to grow, it presses on a nerve constantly, it does not come and go.

[Margerie]

Penelope,

I also had bilateral DIEP. I could be wrong, but I am pretty sure the sternum area is where they access your blood vessels to "hook up" the new flap. They actually take out a small piece of cartilege. I had a small hard lump in this area and ps told me it was probably a deep hematoma related to this dissection. It has softened up a lot, and is not tender any longer.

Maybe you can ask your ps about it the next time you see him/her.

[penelope]

Thanks Jen and Margie,

Jen I have been meaning to call you about the second stage but have been running around with my head cut off as we are moving.

the pain I have is deep and ache and definately comes and goes. Thanks for that little tid bit. It eases my mind.

I also seem to have trouble on the side of my right shoulder blade. I have already had a abdominal CT scan in Nov and there were no aliens so I think it must be my gall bladder.


When does this stress end!!!!! I think it is going to drive me mad.

Thank you ladies!!!! Praying for all of us.

[fauxgypsy]

I understand your worry but I am wondering how much it has to do with having a new doctor and the unreturned phone call. I would follow up with the nurse and get those lines of communication open now. I don't think that that is acceptable behavior. I know that they are very busy but you need to be your own advocate. The clinic I go to is very well known but there is a huge caseload and they seem to have a problem with communication. I know that I am not my oncologist' sickest patient but I am going to do everything in my power to not become that patient. Communication is paramount.


Leslie