CALLING ALL STAGE I SISTERS
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Hi everyone, I'm new to your group and had a question. I am 34. Was diagnosed stage 1A, no nodes. Had both removed and chemo no radiation.
My follow up care is only a physical exam by my MO every 3-4 months for the first year then once a year after. Never had a scan or anything like that, and I guess I never will. My MO says this is normal follow up care.
What's your opinions?0 -
Hi Dora - As if this isn't all confusing enough, it seems there is a great variation in baseline testing, followups, monitoring, etc. There don't seem to be any accepted standards. I was diagnosed early. My MO uses Adjuvent Online, but also gladly ran the Oncotype DX test at my request. My numbers were right on the border, but I chose no chemo. I had multiple tumors and chose bilateral surgery. I'm about 2 years from MX. It sounds like the plan will be to see both the MO and BS for 5 years. So far, I've been seeing them both every 6 months.
I had baseline bloodwork (blood counts, tumor markers, Vit D levels, etc) and DEXA bone density scan and will have those routinely for five years. I am taking Arimidex, which is hard on the bones. I also assumed I would have baseline and periodic scanning, such as a PET scan, but my MO says it is not the standard of care and in someone who is asymptomatic and with normal bloodwork it makes no sense to be exposed to the radiation.
Best wishes!
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Welcome, Dora ~
As TinaT has said above, there doesn't seem to be any set aftercare standards.
I saw my RO & Surgeon only for the first year after my surgery.
As I am now a little over 4 years out (Nov 5), I saw my MO every 3-4 months & now see her or the NP every 6 months. When I reach this coming November, I have been told I will see them once a year thereafter.
I do think seeing the MO only once a year will be a scary but, in another way, I will be happy to reach that milestone.
I have blood-work, TM's (tumor marker test CA27.29), and occassionally, Vit D) each appointment. DXA bone density scan every two years as I am on the AI Aromasin because I am post-menopausal. And, of course, the dreaded Mamo once a year.
Good luck to you, Sweetie. You are the age of my youngest daughter. I wish you all the best.
Stay in touch. We are here for you 24/7.
Hugs!
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Thank you ladies. Lately all I think about is a reoccurrence. Stupid huh! I guess I will do as I've always done and listen to my body. And keep my faith in my doctors that they know whats best. No blood work schuled for me and myMO seemed to think the Oncotype test is not beneficial. Hummmmm it spends where you go I guess
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Oh, Dora, it is in no way stupid to think about recurrence. IMHO, if there is anybody who says they have not thought about it at one time or another, they are not fooling anybody but themselves. Don't mean to sound harsh, just my opinion.
I am a bit surprised you have no blood-work scheduled. When is your next appointment? Maybe they will do labs on the day of & pass on the results later by phone. Some offices do it that way. I go in 1-2 weeks before the actual MO appt. for lab-work & get the results during visit. That way they can explain any changes or answer any questions I may have. They can tell a lot from your labs.
I imagine the reason you did not have the Oncotype DX test is because of your age. With me being 56 at the time of DX, having an Oncotype DX test would determine if chemo would be benefical for me or not. Mine was a 14 so I did not have chemo. When you are younger, they prefer you have some sort of chemo TX.
Yes, just listen to your body. You know when something is not right. Let the MO know if you are concerned about anything. That is what they are there for: You.
Stay in touch.
Hugs!
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Hey Dora I was 46 when I was dx and though not as young as you, the only routine blood work my med oncologist does is a CBC. When I was going and seeing the Radiation Oncologist he was checking cancer markers. I asked my MO why he didn't do them and he said that with breast cancer they really didn't show much. So, I now take Tamoxifen (couldn't take Arimidex) and I go once a year to see the MO and have a yearly mammogram. I'm no longer going to see the Rad Onc so I'm not having the cancer marker tests done any longer and he (the Rad Onc) was always wanting to do a chest x-ray or for me to get a PET scan or a CT scan and a bone density test. I've had all of them done but the PET scan. It was going to be quite expensive for me (my out of pocket part) so I chose not to have it done.
My med oncologist also did not offer me chemo... he said he met with a board of 12 other oncologists at the hospital and went over my case before he met me for the 1st time and they decided together that it would not be beneficial to me. (go figure) He also did not offer the Oncotype test. I did ask about the BRCA test almost a year later and they check with my insurance company. I was told I could have it done, but it was going to cost me 1200.00 out of pocket. I didn't have that in my pocket and at that point my treatment had already been completed. The only reason I asked was because I have a 23 yr old daughter and 2 biological granddaughters and my daughters OB/GYN told her to have me get it done so they would know what risk category she was possibly in. Unfortunately I couldn't accomodate.
I wish the lab companies would realize how much these tests benefit women and their children that are survivors of breast cancer and come down on their prices. It is totally ridiculous to me that a lab test for a few vials of blood should cost over 3000.00 for a test to see if you are a carrier of a gene for breast cancer, etc. The test has been around for a while and should not be so outrageously expensive. (VENT!!) If I could have afforded this test if would have let my daughter GYN know when she needs to start having her 1st mammogram because she could be in a higher risk category than some others, or it may not be that at all. But I highly suspect that she would be, considering my 1st cousin had breast cancer and my great aunt had it and another great aunt had it also. Kind of strange no immediate family members have had it though. Guess it skipped a generation?
Hope all of you lovely ladies have a great and blessed Tuesday... babysitting again today
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Hi ladies! I'm jumping over from the winter rads group and the IDC 2013 survivors. I'm also a Sheila so I hope th
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...so I hope there's no confusion. (Didn't mean to post that before I was done!). I'm looking forward to chatting with you all! Take care!
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Checking in....Hi Val, Hi Sheila and new Sheila, Dora, Tina....that's a far back as I read tonight...
Dora, like Val said, there is not one of us with Stage 1 who does not think about recurrence.
As far as the oncotype score, it is usually given when it is uncertain as to whether chemo would be warranted or now. You have chosen chemo, so you don't really need the test.
I saw my BS at 6 months post surgery, then annually. I also see RO every 6 months. And I see MO every 6 months. The cancer center staggers my visits so that I am seeing a doctor every 3-4 months. I get blood work and have never had a scan.
I hope you are doing well and continue to get good reports.0 -
Hello I am new to the list. I seemed to have been a
Little obsessed over the last little bit that I had a recurrence. It wasn't till yesterday that I realized my mammogram was today and tomorrow is the 1 year anniversary of my dx. It was fine by the way. It is somewhat comforting knowing that others worry too.0 -
Welcome to our group NEWBIES..♥
Ibethewife After 8 years if anything happens to my body...my mind goes there...it's a normal reaction to most of us
Dora...Most every MO is different
The first 2 years it was every 3 months with BW and Tumor Marker test
3 to 7 years was every 4 months...just recently i graduated to every 6 month......
No scans just blood work and Mammo once a year
Sheila #2 You are at the right place..sorry lately I was MIA a lot.....but I'm back to my post...
And for my other Sisters a big hug...i missed chatting with you all here......
♥♥♥♥♥♥♥
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Swgee ~ Welcome! How did you fare with Rads? I hope you didn't burn too much or that you were too fatiqued. My burn was near the end of the 28 regular tx & during the boosts. The Silvadeen was a big help & I would always recommend Aloe Vera. I know many gals have many tired days but I didn't, got lucky there, I guess.
ibethewife ~ Welcome to you as well. Isn't it something that at first we almost count the days - days of treatments, days of doctor appointments, days of crying, days of cooking, cleaning, caring for our family & many days of trying to put our fears on the back burner. And, then, the time has come & gone for our mammo, & the day of our 'anniversary' is upon us.
We all look forward to getting to know you.
Hugs!
(Hi Sheila & Joan! Good to see you, Renee gal!)
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Thank you thank you thank you, everyone. I think I've been. Looki g for that standard of care and it's not out there. Not in my case at any rate.
I have my first 3 month check up in June and I guess I'll see of they do labs. I hope so, for peace of mind.
As for the BRCA test. I wanted to say that it is outrageously expensive. My insurance company denied because I have a genetic test exclusion in my policy. And yes it's legal, I found out. Long story short, my sister had the test as her insurance paid for it. Hers was positive. BRCA test checks for all sorts of mutations. Since she was positive for a specific mutation they new exactly what specific test to do to look for my mutated gene. I paid $500 and they did three tests and one came back positive for the delitrious mutation.
Just thought I'd share there are more alternatives to the expensive test and they're all done by Myrilab.0 -
What? Middle-aged is 40-60ish? I'm thirty-seventeen....(47)... So I'm middle aged? Sheesh!
Don't know what stage my tumor is... Seeing surgeon on Thursday...
Blessings to all of you!!!
Karyn
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Hi everyone, its been a while. 2yrs since my dblmx..now my mom was diagnosed with stage 1, good news, only a very small place so she,s doin a lumpectomy with balloon rad. Does anyone know much about this?? I go in for an ultrasond wed. Cuz there is a spec they can't figure out, th nxt day is her surgery. Just tryin t get some opinions. She has heart disease as well! Thanx,
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I must add that I also did th brck test and it came bk neg. My mom was diagnosed a month ago and will be havin a lumpectomy nxt week
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Hi and hugs to everyone here...
Joan0 -
Wow, so many newbies! Glad to see you, sorry that it had to be here. Not that Sheila's "place" is bad, but that you had to have BC to be here!
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And here's another newbie! I've been reading the thread for a few days, but just thought I'd peep out of lurkerdom and say hi! I just had my lx plus oncoplasty last week and am now "officially" a stage 1.
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Hey ladies I lost this group somehow and have not been on in a while tried to read and catch up but still have a couple of pages to go.
Seabeal who was your rads onco in San Antonio, just curious.
Ironmagnolia I live an hour from SA. Dr. Ledoux was my PS, PRMA is great. I was not a candidate for diep flap so I ended up with implants, but they look great and Dr. Ledoux was the only one willing to do nipple sparing on me. Like Seabeal can't say enough good things about PRMA.
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Sherry, my radiologist was Dr Eyre. He was a real sweetheart, very quiet spoken and gentle. I had minimal SE with some burning toward the end but nothing like I've seen others go through. I would recommend him in a heart beat and of course since he was recommended by Dr. C I never had any hesitations.
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Dora
I am not on tammi, but it might interest you to know a new study came out just yesterday , claiming that several cups of coiffee a day boosted the effects of tamox. significantly. I put the link on the tammi thread, but you can always google it.
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Hi ladies, I've been on the board, but haven't participated in this particular group. But I am one of you (and hope to stay at this status!). Next Thursday I begin taking Tamoxifen. Dealing with some SE from my first Zoladex shot. Fun! fun! fun!
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LOVE your avatar ReneeinOH! Specially the purple hair!
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Thanks! That is Hit Girl. She's comic book and movie character. I chose her because wanted to take out cancer the way she takes out the bad guys (no-holds barred, very violently!).
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ooooooooooooooooooohhhhhhhhhhhhhhhhhhhh! I thought it was you! You coulda just kept quiet, I wouldn't have known the dif-but great vibe!
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I was on the same wave length as you, Eph. I thought it was a cool Halloween costume.
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Hi,
I join Sheila (thanks for starting this group, my first home at BCO), Seabeal, Mimi, Val, Eph, Sherry, Meece and any other "founders" in welcoming the new ladies. So glad you found us, but sorry you have to come here.
As Sheila says, we never feel "out of the woods" but I can go for longer periods without thinking about BC once the treatments are behind me.
Dora, so sorry to hear about your positive genetic test but thanks for sharing the creative way that you were able to narrow it down from your sister's test. Wishing you the best outcome for you and your sister.
Smiley, sorry to hear about your mom - I don't know about the baloon rads. You have a lot going on...
I have to get back to work...so wishing everyone a good day here.
Joan0 -
Hi Sisters...♥
i have a question for those who have had a Pelvic/Transvaginal US
What was your experience/
You can PM me if you want..
Thanks
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Sheila, I couldn't tell ya cause I've never had one, but if I had----it would have been the most action I'd/I've had in forever & day, I know that!
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