CALLING ALL STAGE I SISTERS
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jodimaca...Yes in a way they were comforting and anxiety producing.. But when he ordered all those tests I didn't even know what to think but the worse. Because i was already DX stage 1.
I kept a diary for one year that helped me a lot emotionally.
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seyla - I am not sure I can even keep a diary - I have been struggling with concentrating on a good book, backgammon, etc. Not a horrible chemo fog, just a loss of je ne sais quoi...:)
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My concentration still not good. I cant even read a book anymore.
But diary is there. All my treatments, my tests, my fears about loosing my hair.....I read it couple of times, it helps me knowing where I was and where I am now.
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I had head to pelvis CT scan, MRI and chest xray before surgery and a nuclear bone scan and a bone density scan post surgery. My surgeon checked everything he could with everything he had. We don't have oncotype test here so the onc just goes by the cancer stats.
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raeinnz - See now I am jealous - I would much rather have had those than the oncotype which effectively told me nothing other than what I knew - I am intermediate everything
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Hi, my name is Jeannie, I believe I am stage 1 but not absolutely sure. IDC but don't even know the grade. I had a lumpectomy 3 weeks ago but have not been told if the margins were clean. Still have not heard anything back from my sentinel node biopsy or my MRI.....both 10 days ago. I do know I go to Victoria in January to start my 16 weeks of radiation therapy. Will miss my kids but can come home on weekends. Will be glad to get all my information. Everyone here seems so informed with what's going on, I really feel in the dark here. Have called my onc. twice in the last 10 days but won't talk to me till he has all my test results back. I know he just wants to be able to give me an accurate and final diagnosis. One more thing.... I have breast implants, under the muscle so the lumpectomy didn't affect it. I still don't even know if I have to have the implant removed! Anyone else?? Thanks for any replies. Oh and by the way, I hate pink too!
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Hi rae...5 years ago they didn't do onco test.
Sometimes I ask my Oncologist these questions and he looks at me like why do you care after many years. I just found out about that percentage thing on ER+ I was 90% and PR+ 10%
I don't know if i asked this question before but HER was 2.2 I still don't understand what it means if its high or what?
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Jeannie (fellow pinkhater from Seattle here) - I am stunned that you don't have every bit of this information. I knew when I left the hospital that he had found clean sentinel nodes which were later confirmed. I knew within two days that I had clean margins. I knew BEFORE surgery my grade and stage. It just seems like cruel and unusual punishment and I am so sorry for you having to wonder. I guess what you do sort of know is that you won't be having chemo - I don't think they would have scheduled radiation already if you were - so this bodes well for your situation. You also likely have clean margins or rads would not be scheduled. I am very surprised you are not having Canadian protocol radiation, more like 4 weeks I believe. Do you not have oncology or breast surgeon appointment coming up?
The other night, some family members were telling me how much better the Canadian medical system is but I am struggling to believe that based on your post.
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seyla - i was a 2 and was told that 3 was positive for herceptin. I wish I had been dealing with this in 2005 instead and then I wouldn't have all this stuff in my head
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Ladies - I changed from jodimaca to raincitygirl because i found out if you googled my screen name, everyone could see our posts. Nobody knows me as raincity girl so....
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i think I was DX at the perfect time because May 2005 Herceptin was approved for early stage BC. And I was one of the first patient getting it so they really didnt know my outcome.
I guess they don't call it the miracle drug for nothing.
Sometimes I question myself why I was treated so aggressively. Tumor was 1.2 cm and I was already 6 months post menopausal.
Now we really opened a can of warms.
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warms or worms
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warm worms, eeww
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deborye - glad for your good news - may you encounter no warm worms
where in MA?0 -
Chelmsford, 45 min from Boston
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Worms.
It is scary i googled my screen name and information is there.
Changing the name has no effect then it will show the info under your new name. I don't like this.
Hi Deb.
Hi JMW
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I have been keeping a journal since dx, it is mostly on the computer, I also have a notebook filled with test results and doctors comments. I should up date my computer notes again.
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Also have anyone had to have non nipple sparong reconstruction? My bs didn't want to take any chances with it in my nodes
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Deborye - Danvers
now in Seattle! Husband from Maine.Seyla - I don't like that either. Maybe someone knows how to set that to be private? I couldn't find anything..
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damn, I was trying to insert a funny cartoon with no luck...
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I noticed another think any outsider can post through googling without being a member.
HMMM. Let see what can be done or if something can be done.
No personal info or don't use family members names when you are posting if you really concerned about your privacy.
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So glad (so sad) to have learned this though. You are up very late, especially with DST starting....
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You know what raincitygirl.....I decided not to obsess over it. But its not just BCO>com has ths info. IT says something like board readers.com and even the members of the thread are listed.
After these many posts Im leaving it alone. I don't want to get all upset about this.
What do you say?
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Not that anything I say is all that interesting, it is that I have elected not to tell quite a few people and the potential is now there for them to find out. It means I don't really have control over who knows and damn, that is the one thing about BC I wanted to control along with some professional reasons. That said, I searched for a contact place to write to and didn't find one but will try again tomorrow. I didn't mean to make it your job
Now go turn those clocks and get some rest 0 -
lexy - I had clean nodes but I chose BMX (one prophylactic) to give myself the best chance of preventing recurrance. When we were disussing the options my surgeon said 'nipples are breast tissue. Why would you leave a large area of breast tissue which could be a site for a recurrance?" 'Sensible question' I said so I chose to have the nipples removed. I had implant recon but no fipples or tattooing. Am happy with my decision.0
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This site is my journal...i knew when I first registered that it was public information, thats one reason why I do not include my DH or kids names. My screen name was someones email address I saw once, so I decided to use it as my own. I have a tendency to watch my words when I post, but not always...
I wish I could figure out how to print out all my posts...
Lexyloo - I had BMX w/TE and did not have nipple sparing. I documented my progress with photos from the night before surgery through exchange. You can PM me if you want more information...
Onestep - I PM'd you back
((((Shelia))))
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It is so great to see you, Michelle !
{{hugs}}deborye ~ NED on your MRI ! YAY !!!!!!!!!!!
YAHOO !!!!!!!!!!!!!! 
Dang, that's good news!!Welcome Jeannie !
mellysu ~ 2 years like me! YAY! What a beautiful life this is! {{hug}}
Have all my clocks set except for the cars. Watched a late hockey game, we lost, boo-hoo.
Getting tired, must be feeling that "other" time that shows on the computer, not the time on my desk clock! love to all
♥
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raincitygirl - I know what you mean when you say its not chemo fog just a loss of je ne sais quoi. I used to read heaps but now 30 mins and my mind is saying enough or watching TV an hour is about all I can really concentrate on! Very annoying.
sheila - re HER2. The routine test that is done on all BC samples is the IHC (immunohistochemistry) test which checks the levels of a certain protein (receptor) on the surface of BC cells to see if the cells use Human Epidermal growth factor as fuel to grow - just like the tests for ER and PR look for estrogen and progesterone receptors to see if the cells use estrogen or progesterone as fuel to grow. A score of 0 or 1+ means there are normal amounts of the receptor present; 2+ means there are a moderate amount of the receptors present and 3+ means there is an excessive amount of receptors. 0,1+ and 2+ are classed negative with 3+ being positive. However a 2+ score can be double checked by another test, the FISH (flourescence in-situ hybridization) test which checks the number of HER2/neu genes in each cell. If normal levels of the gene are present the HER2 is negative and if excessive amounts of the gene are present the HER2 is positive (there are no number values attached to this test). Does your path report say whether the 2.2 is the IHC or FISH test? It sounds like the IHC because it gives a number but it is unusual because it should just be a 2+. Hope that helps you understand it a bit better but sorry it doesn't explain the 2.2
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Oh rae....Thank You. You explain everything so clearly and I noticed that in other posts too.
I really don't know. All I asked was my HER2 level and he wrote down 2.2
I think I should really forget the tests done more than 5 years ago.
I got all the treatments and everything is fine so far.
You must be sleeping now.
♥
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O2behealthy, I don't know if it would work, but you could at least give it a try. Go to your home, and then to your recent posts. It may list them all. Ten I would highlight and copy each one, and paste it into a Word doc. Other than that you could do screen shots of all of your posts.
I sort of use this site as my journal as well, but when I move past an event in my life, It sort of gets lost in the fog that was my brain. (I never recovered completely from chemobrain. My onc said she could set me up with a neurologist, but I am afraid of what they might find...or not find).
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