Here is what I was told.

lola12

Hi All,

 I really dont understand all that is happening, and boy I can use some friendly input. I had stage 1, grade 1 ILC with some DCIS. Due to unclean margins with DCIS, I opted for unilateral mastectomy almost 2 years ago. Her 2 neg, ER/PR +. Last summer I got a oophrectomy to prolactively remove my ovaries. 

Over the past few weeks, I have had some swelling under my sentinal node biopsy (neg) side, and a little down my arm. First the oncologist thought it could be cellulitus. Antibitics did not help. We did a Doppler ultrasound to check for DVT and that came back clean, no clots, no masses, all good. Next my doctor sent me to a lyphodema specialist who today saw some swollenness, all felt good, but thought maybe it can be nothing, or maybe it can be vascular or it can be lymphodema. Back to my oncologist, all my blood work is fine, tumor levels fine, physical exam fine....her next thought it to do a chest CT just to be sure, and to continue with the lymph massages. I dont understand why she would like an entire chest CT??? I am starting to get very nervous, like cancer is suspected. She just said we need to cover all bases!

What do I do, what do I think. I feel like I should prepare myself for bad news again.

Lola 

barsco1963

Although it is easier said than done, try not to worry about what "might" be. Everything so far indicates no concerns and maybe it is just that your onc does want to cover all bases. I would hope that my onc would do the same and determine that there is definitely no mets.

Hang in there. Keep us posted on the CT results. Good luck. 

lago

Now that we we've been diagnosed our doctors just want to rule out mets. When I got my first scans they saw something on my liver that they assumed was a cyst(s). My onc still wanted me scanned after chemo. They saw 3 lesions that they still think were cysts. Onc wanted a repeat in 1 year.

So this past February was a year, another scan. one of the tiny lesions has disappeared, others no change. Great so I figure I'm done with scanning. Nope. Now my onc wants me to get tested again in 6 months because I'm further out from chemo.

My onc still feels its cysts but want to be sure.

This follow up your onc is doing is a good thing. Don't assume it means they suspect mets. They just need to rule it out. And in my case once the see something they will continue to monitor even though in their gut they know it's nothing.

Hope the LE PT helps get that swelling down and your CT is clear.

lola12

Well, Thank you lago and barsco1963 for talking to me. I am so lucky, my CT was fine. It is really hard not to worry while you are so vulnerable to the life changing information that can come from these results. I wish I can buy both of you a drink! Thank you, your words really do make a difference.

Lola 

lago

Great news. Remember in order to be a survivor you need to live. Go out and have a drink and start enjoying your life again (in moderation… don't get wasted).