finding those sneaky mets

Anonymous

Thinking of you Nancy.

It is so hard not knowing!

keeping you in my prayers and sending a gentle hug your way.

Astrid.

Please keep us posted.

Lily55

Hey Nancy that stinks, but remember that chemo is NOT inevitable for liver mets, people can have that section of the liver removed........as the liver regenerates itself so even if it is the worst, which it may not be, you have negotiating room................good luck

I am struggling still some times but I think fundamentally ok........lots better than I was, I have a lot more emotional support than I had, and I am trying to just say to myself, oh well that´s just a thought..............bit I could do with some more energy and less pain......haved decided it is wsise to apply for disability even though I struggle with it. but then its just a word...............................

mtks

Hi, I've been away from the board for a couple of years. It seems when that inner voice talks to you and makes you aware of something that is NOT right and you address it with your oncologist his reply is "you have no breast tissue there" . That should be enough for me but it isnt. Its an area below my left clavical-about 1 o'clock at the top of my breast. It has pain that comes and goes with no rhyme or reason. I have pain when I palpate the area. Area is wider now and seems to have some heat with it-sounds funny I know. I will celebrate my 5 yr Aug this yr! 3 yrs ago he did order a PET scan-neg mri of breast but they couldnt include clavical area-that was a diff order they said. You cant locate it if I am lying down only sitting up..I have had some fat grafting to the upper shelf of both left and right to help with reconstruction. my right does not have any discomfort. My lobular was found at 11 o'clock on my left. It wasnt the lump that they reomved that was ILC but the tissue that came out with the lump..The surgeon said if he would of aspirated it they wouldnt of found it . Good thing I was insistant of a lumpectomy. am I just overly concerned or what? anyone's thoughts?

wallycat

Mtks, so sorry you are having the stress of a possible 'something.'

I don't know that I would let pain be a guide one way or the other. If you find anything that bothers you and unnerves you, I would find someone to biopsy/scan/figure out what it is. How well we all know that it can be anything and rather than spend time worrying about it, investigate it. I had a small lump--it was moveable--about 1/2" down from my initial incision. BS was sure it was fat but since no one found my cancer and they "guessed" wrong on the size and they got it wrong speculating my oncotypeDX socres, he scheduled me for a local surgery for removal. Mine turned out to be fat; finally, they got something right, LOL.

I think if i had not had it looked at, it would really have taken too much energy and time for worry.

Good luck.

mtks

THank you! You are so right!! I just need to ask for an sonogram! ?? my initial ILC did not show up in mamogram and questionable in sonogram. That's when I was determined to rule it out.. I guess my hesitation is that I had fat grafting and it can mimic cancer.

Do you know of any test that actually image lobular in clear view. After reading A bit it sounds like some scans are not as reliable.?

fizzdon52

Hi mtks in my opinion, or from what I have learned on my journey, MRI is the best way to detect Lobular Breast Cancer.

Anonymous

Dear all,

My MO won't do PET scans. I see her about every 4-6 months and she orders a CBC, closely monitoring white blood counts, liver enzymes, kidney function, and calcium/alkali markers. She thinks that is enough. I trust her. But I haven't had a PET scan since my initial dx and testing phase. No tumor marker tests done by her, ever (interesting how MOs are so different in follow up protocol), although 2 years ago I went to see a naturopathic oncologist and he ordered and did the CTC test, which came back great. He also tested my immune system, and said my immune system cells "bite back hard" at what might threaten them, so that was good, too. I haven't been back to him because he's 3 hours south of me and was incredibly expensive. Insurance won't pay. I just survived my latest 4-6 month CBC/follow up with my MO...

Claire

MNLinda

mtks, it seems to me heat suggests infection.  Any redness or an elevated white blood cell count?  Another thing that can create heat is a clot in a deep blood vessel.  A CT or MRI with contrast might reveal something.  Good luck.

mtks

Thank you MNLinda! Looking to address poss. MRI or CT w/contrasr w/ pcp

wallycat

IllinoisNancy,

thinking about you today and hopeful it all went well and uneventfully.

((((((((((nancy))))))))))

IllinoisNancy

Hi Ladies,

Wallycat: Thank you so much for thinking of me!

I saw both of my Peoria surgeons yesterday and they are in agreement that I need a liver biopsy. Since I'm leaving on vacation Saturday, I won't get it until the 7th or 8th of April. I'm still waiting for OSF to call me with concrete times. They said that the 2 cm mass is comprised of tissue so it needs to be looked at more closely. I hate to think that it could be the ILC again but I suppose that is possible. I'm going to try and enjoy my week with family and hope for the best when I get back. I appreciate everyone's support.

Nancy

toomuch

Nancy - Sorry that you're waiting on the unknown again. Hopefully, you'll be able to stay fully in the present and enjoy your family vacation next week. Hoping for benign results in April!

IllinoisNancy

toomuch,

Thank you for your good wishes.  I will do my best and hope for benign but no matter what the results, I will fight with all my might:)

Anonymous

have a great holiday Nancy,

and God willing, all is ok and non cancer when you get the scan.

astrid.

wallycat

Nancy,

waiting for a post from you and thinking about you! Hope your vacation was fun and things turn out great.

(((((((((nancy)))))))))))

IllinoisNancy

Hi Friends,

I had my biopsy on Thursday and the pain was pretty bad for the first 24 hours.  He did 6 biopsies so it was more involved than I thought.  I was told it would be 3-5 working days until I would hear from my doctor of the results.  I continue to keep my fingers crossed but preparing for any and all news.  Thanks for your concern.

Take care,

Nancy 

mtks

hug and prayers to you Nancy. Please keep us posted

Beatmon

Nancy, praying for good results

wallycat

ugh....that horrid waiting!!! Sending good thoughts and thinking about you! Thank you for the post.

hartrish

thinking about you Nancy!

Anonymous

me too Nancy.

GeorgiaRai

Adding my good wishes for you, Nancy! 

IllinoisNancy

Hi Friends,

Still in limbo waiting for results.  Hubby called surgeons office this morning and they said "no news".  The waiting goes on......

Thank you all for checking on me!  Love the support I feel.

Nancy

Holeinone

thinking of you, with fingers crossed for b9 results.....

wallycat

uuuugghgghghg.....waiting.....grrrrrrr........

((((((((((((nancy))))))))))))))))))

IllinoisNancy

The waiting goes on. I sure hope I hear something tomorrow. I feel like my
life in on hold.  Thanks for all the thoughts and prayers....it really helps:)

Chloesmom

Thinking of you!

Annette_U

Nancy, hope the outcome goes well, thinking about you!

Best, Annette

Lily55

Waiting is horrible, feeling for you Nancy.............

toomuch

Nancy - Waiting with you...