CALLING ALL STAGE I SISTERS
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I had a bone scan. I don't know if the fact that I also have asteoporosis was a factor in this decision or not. My Oncotype was 18. I failed miserably with both AI's and am not a condidate for any osteo treatment. My doctor is telling me Tamox. I filled the Rx, but haven't taken one yet. The SE's of the others were horrid and I'm just beginning to feel like myself again. I may start taking it after my annual next month, but not before. I want to make sure there are no gyno issues going on before I take something that increases my risk of 2 other cancers and is listed on the AMC's web site 3 times as a known carcinigen. I'm taking DIM and doing all the dietary things in the meantime. It may increase my risks, but there are serious QOL issues in play for me.
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Hi All
While waiting for the Ocono type test results to get back, my MO had me get a PET scan. (I was 68 at the time). That showed no evidence of disease elsewhere. Scan went from top of skull to mid thighs.
Since my Onco score is at the lower end of the scale, he said he saw no reason for me to go through chemo. I did have Brachytherapy radiation, and have been on Letrozole since mid November last year.
I am headed for my 2nd semi-annual checkup (mammo and appointments with both RO and MO) next month. Checkup in April was NED!!!!!!
I am hoping for same result this time..
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Hi All
While waiting for the Ocono type test results to get back, my MO had me get a PET scan. (I was 68 at the time). That showed no evidence of disease elsewhere. Scan went from top of skull to mid thighs.
Since my Onco score is at the lower end of the scale, he said he saw no reason for me to go through chemo. I did have Brachytherapy radiation, and have been on Letrozole since mid November last year.
I am headed for my 2nd semi-annual checkup (mammo and appointments with both RO and MO) next month. Checkup in April was NED!!!!!!
I am hoping for same result this time..
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Hi All
While waiting for the Ocono type test results to get back, my MO had me get a PET scan. (I was 68 at the time). That showed no evidence of disease elsewhere. Scan went from top of skull to mid thighs.
Since my Onco score is at the lower end of the scale, he said he saw no reason for me to go through chemo. I did have Brachytherapy radiation, and have been on Letrozole since mid November last year.
I am headed for my 2nd semi-annual checkup (mammo and appointments with both RO and MO) next month. Checkup in April was NED!!!!!!
I am hoping for same result this time..>3
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Val and Annette, so good to hear from you! I hope you are both doing well and enjoying your families and life itself. Annette, how is your mom doing?
Re: scans -- I was never offered a scan and I do not want to be enclosed for any test. But I do often wonder how I'll know I'm truly cancer free. My BS has said "you will be fine - you will see"....and I suppose that goes along with being Stage 1.
Vicks - I truly hope you find everything is still NED and that you are putting BC behind you. Good luck!
To all the new ladies here, I am sending positive thoughts your way as you navigate the great unknowns of BC. I am impressed with how well informed you are. That is the first step to being a part of your recovery and to understanding your treatment plan and prognosis.
Hugs to all,
Joan
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Val and Annette, so good to hear from you! I hope you are both doing well and enjoying your families and life itself. Annette, how is your mom doing?
Re: scans -- I was never offered a scan and I do not want to be enclosed for any test. But I do often wonder how I'll know I'm truly cancer free. My BS has said "you will be fine - you will see"....and I suppose that goes along with being Stage 1.
Vicks - I truly hope you find everything is still NED and that you are putting BC behind you. Good luck!
To all the new ladies here, I am sending positive thoughts your way as you navigate the great unknowns of BC. I am impressed with how well informed you are. That is the first step to being a part of your recovery and to understanding your treatment plan and prognosis.
Hugs to all,
Joan
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Bgail, my BS wanted me to have a PET scan, but it was denied by my insurance. She had me do a bone scan + CT scan instead. However, I had a biopsied node that was positive for cancer cells (pre-surgery). I was also a higher stage at my initial biopsies (2b/c) than I ended up being after surgery (1a).
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Hi back at you, Joan! I'm hanging in there. (or should I say, hanging on?) (I've missed you) It's that time of the year: labs done this past Tuesday, Onco 6-month check-up Oct 3 and I need to schedule my mamm for sometime after Oct 14. Can anybody say, "STRESS"????
I have never had a PET scan. I had whatever you have before Rads for positioning of heart, lungs, etc., whatever that was. (a CT?) I'd have to get out my Medical files to look it up. Some of those moments are a blur - thank goodness I kept a journal. My Onc relies on blood-work, her check-up of me, and how I feel in general. My oncotype score was 14.
Sending strength to all the new gals. You will come through it. You are stronger than you know.
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I had upper and lower CTs and a PET scan prior to chemo. My age at the time, 40, and bbeing a triple neg. probably contributed to their aggressiveness.
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Hi all. So I go to my chemo class this afternoon and may start TC this week.
Not something I'm looking forward to but I want to start it as soon as possible so I can get it over with. I must say though, my Oncologist and her nurse are AMAZING! I called there a little while ago and her nurse doesn't make you leave a message and she'll call you back. They put me on hold and they she picked up. It was so nice. We talked for about 15 minutes as she tried to calm my fears. I think this will be a positive aspect through all of this. 0 -
MrsCich sending warm hugs and Prayers to you - I was so scared when I started mine , just took one step at a time and got it over with. Felt like you the sooner I got it started the sooner it would be over with.
Doing Rads now.
Big Hugs.
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MrsCich - Having a great team makes me feel like I'm not struggling through this alone. Sounds like you've been very lucky as well with all your specialists, etc. I can only speak for myself, but I was in "fight mode" for a long time and it really helped to know that the key people taking care of me really were on the ball. It has made things so much easier and I feel very lucky.
Good luck with your chemo regimen. Get 'er done!!!
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MrsCich - Having a great team makes me feel like I'm not struggling through this alone. Sounds like you've been very lucky as well with all your specialists, etc. I can only speak for myself, but I was in "fight mode" for a long time and it really helped to know that the key people taking care of me really were on the ball. It has made things so much easier and I feel very lucky.
Good luck with your chemo regimen. Get 'er done!!!
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I had my chemo class this afternoon but that's not the news I want to share. My Onc (whom I love) called to tell me she was reviewing my case because she can't seem to pin point the size of the actual IDC part of the tumor. I had 2 areas. One at 10 o'clock was all DCIS, the area at 1 o'clock was IDC and DCIS. She is presenting my case to the Oncology Board tomorrow morning so they can review it and give recommendations. So, if my IDC is smaller than 1 cm, I won't have to do chemo...just hormone therapy. She has to bring the scans to the board and all the path reports.
I should know tomorrow afternoon.0 -
Ladies,
I have not been here for a while (since the site changed it crashes my computer), but I really wanted to share that today I had my ultrasound (an alternative to mammagram that I requested to get more info, less pain, and NO radiation) and I was very, very very scared. And the results, after 14 months, is, I am so grateful to God and to ALL to report: all is CLEAR! I feel so so grateful.
Love,
Truebbf
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Truebff-Congrats! Maybe you can breathe easier now!
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Congrats Truebff.......treat yourself to something nice now.
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Went to see my oncologist today. This was scheduled six weeks after my last visit with no explanation other than checking on my seroma. I didn't see my labs last time so I asked for a copy. My liver enzymes are elevated, my Vit D is too low. Why didn't he mention this? Now on 50000 units Vit D once a week, no pain meds(thankfully I am healing well from fall and can tough it out) Reaffirms that we have to follow up on everything on our behalf.
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truebff
FABULOUS news for you ! that's great .
I am scheduled for a DX mammo next mo., but really dont want one... do you trust US results and how did you convince your DR/ INS CO ?
Thanks for any details.Celebrate !!!!
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Purple,
I talked and asked and asked alternative and other pros about radiation and was strongly supported in challenging the mammogram in exchange for the less hurtful ultrasound. I also have very small beasts and with the initial diagnosis, they still needed the ultrasound for final diagnosis. It only made sense to ask for this and not the mammogram.
I needed the diagnostic test to be the least harmful to me. It took some courage to request this, but I am VERY glad and VERY grateful for the support I had in doing so, which is why I am sharing it here, so you all can consider this for yourselves too, if it is the right choice. I've had all the unnecessary radiation I can tolerate and if I need any more, I want a VERY good reason.
Also this did not hurt my poor recovering breast.
I cried through the whole procedure, I was so scared.
And I am down on my knees in prayer tonight. God Bless us all. This is scary stuff and LIFE is dear.
Amen. Awomen. Achildren.
-true
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Thanks truebff
I now have breast LE ( never had rads mind you!) and I really dont like the idea of a DX mammo creating that dent !!!!
Good for you !0 -
My u/s didn't show my mass. If it wasn't for me pushing to get a MRI I would never have known that I had 2 areas..one being IDC. The mammo I got the day of the biopsy didn't show my cancers due to dense breasts.
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I am due for a mammo next month. I am requesting an ultrasound instead. I still have some pain in my breast and I also want no more radiation!
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Thank you all so much for all your kindnesses and well wishes.
And I wish every one of you the support and courage to request/ask for the information and the tests most apprpriate for you too!
Mrs.Cich, It is very important for us to realize that asking for the right-for-us-as-indiviudals tests is something we can and should do. For someone like you with very dense breasts, your test sounds like it was essential!
In my case, the mammagram is a very painful and not very productive proceedure as I have very small breasts and their reading was still in need of an ultrasound. Also, in my case too, I found the lump myself before the mammagram and it was very early, thank God.
The ultrasound really is the best test for me at this juncture anyway and the least painful also avoiding further radiation. I did tell my MDs that if there was an important reason, I would submit to further/other tests. But right now,I am very grateful for all the support I had in going over the "standard" proceedure to request the one I felt was most appropriate for me.
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Truebff & others...I'm still months away from the first followup and my BS told me in the very beginning of this (when I ask about followup) that I would continue to get mammograms. After having a mammogram, ultrasound and MRI, I will only agree to an MRI. The MRI should my lump as did the ultrasound, but it was the MRI that found another cluster of calcifications that had irregular cells, that were ultimately taken out with the cancer. It seems to me that the MRI is the gold standard, not the mammograms that everyone touts.
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I found mine as well. My first u/s showed nothing and I was told it was "probably a ridge of breast tissue" and that didn't sit well with me. I called a bs to see how much a MRI out of pocket was because I was told it wouldn't be covered by insurance because it wasn't medically necessary. I have no Hc of BC and am too young for yearly mammos. The only reason I got the one I did was because try wanted to try a mammo or u/s guided biopsy if possible. MRI guided was the plan but its much more difficult thy way. Luckily the 2nd u/s I had showed the areas and we were able to do an u/s guided biopsy. The mammo wasn't too painful for me but I was big busted before BC now I just have these awful TEs.
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As far as mammography, the latest improvement is Contrast-enhanced spectral mammography that was approved last year.
Anyone know about this? You won't find info on this on the Komen site or where it can done. It is like an MRI in it's ability to see suspicious areas because of the dye, but you get the results immediately.This place in CA is the first commercial place to have the machinery, but I have no idea if any hospital/cancer centers are using it. I know the Betty Ford Center in Grand Rapids, MI isn't....I would think the BF center would be very progressive...but it isn't.
http://www.diagnosticimaging.com/womens-imaging/content/article/113619/2073398
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I agree Junif. I have (had) very dense breast and never felt anything on exam. My routine found a small change, less then 1cm, followed up with US and biopsy showing a slightly larger area then an MRI which found 4 more totaling more the 5cm. A 5th and the largest was found during surgery (I guess no matter what they find or what they tell you, you just never know!). None of the test are infaliable, it's all a crap shoot but I would need to go with the one that turned up the most information (short of exploratory surgery).
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I agree Junif. I have (had) very dense breast and never felt anything on exam. My routine found a small change, less then 1cm, followed up with US and biopsy showing a slightly larger area then an MRI which found 4 more totaling more the 5cm. A 5th and the largest was found during surgery (I guess no matter what they find or what they tell you, you just never know!). None of the test are infaliable, it's all a crap shoot but I would need to go with the one that turned up the most information (short of exploratory surgery).
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I agree Junif. I have (had) very dense breast and never felt anything on exam. My routine found a small change, less then 1cm, followed up with US and biopsy showing a slightly larger area then an MRI which found 4 more totaling more the 5cm. A 5th and the largest was found during surgery (I guess no matter what they find or what they tell you, you just never know!). None of the test are infaliable, it's all a crap shoot but I would need to go with the one that turned up the most information (short of exploratory surgery).
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