CALLING ALL STAGE I SISTERS
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Nancy I take 3mg of melatonion at night.
Odie welcome to the thread but sorry you have to be here with us. It is a great group of ladies and never hesitate to jump right in or ask questions. I kinda failed my first mammo. Actually was too young to get them yet but gyno felt a lump and sent me for one. Ended up having ADH and had to have a lumpectomy. Then 14 years of good mammo's and then IDC. Did you have an oncotype dx done. That really helps in trying to determine if you need chemo or not.
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Good Night ♥
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Tina, Glad I'm not alone with a pile of things undone. Of course, having BC makes us think that we may never get this stuff done. My problem is I felt great 2 days after lumpectomy and started driving and went to work in a week. So, I sabotaged my own free time. One thing I did was after dx I gave up my evening classes so now I have nights free. I really like that. I hope I can use the time well.
I am happy to say the critter returned twice, made a lot of scary noise, then left. I never saw a thing.
Hoping to sleep tonight - I took the day off from work, rested, then cleaned the house for hours. I'm paying now....
Tina, how did the decision to not do chemo come about? Was it not recommended for you? There seem to be a lot of variations among oncologists.
Thoughts and hugs to all,Joan
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I figured I'd join in this group. I've been so focused on the triple-negative and Grade 3 aspect of things that I need to step back and remind myself that, at least as of my official diagnosis, I'm still Stage 1. Surgery tentative for late October (BMX w/ reconstruction). Wish it would come sooner...!
Joan and Tina - I know the feeling. I used to keep a diary on a regular basis but now rarely pick it up. I thought this would prompt me to start again, but it's been about 2 months and I haven't had a chance. Or maybe I'm afraid that once I picked it up and started writing, there's just too much to say and I have no idea even how to start. On the other hand, I guess by keeping up with my regular activities, I'm staying occupied.
For all the insomniacs out there - you have one more companion for late-night posts.
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Good morning, I'm new here and just loving this site. Meeting so many wonderful ladies. I was diagnosed with IDC, stage 1 BC in April 2011, had BMX in May 2011. My worry is that I have only been put on Tamoxifen for five years. No chemo or rads. I don't understand why no radiation followup just to be on the safe side. Oncologist said that the Mammoprint test came back so low risk that it wouldn't benefit me by getting radiation. I'm not complaining here, just have that constant worry that we all wake up with. Also, he said no scans are necessary anymore. At all. I just take their word for it that it's all OK?
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My understanding is that when you have an mx, they usually don't bother with radiation because they've taken as much of the offending tissue as possible, but that chemo usually is involved. Your case could be different (small tumor and no nodes), so perhaps you don't need the chemo. Check around online, and don't be afraid to ask him for a specific explanation as to why no chemo.
Even with chemo, that fear is always going to be there, but I understand your wanting to cover all the bases!
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Yes, that's exactly what he said. Small tumor size, node negative, low risk, BRCA negative. All factors fell in my favor, which I'm so so thankful for. Still that stupid hovering fear. Thanks for answering
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Welcome to all the newbies - this is a great place to be but sorry you have to be here with us. You will find lots good information and support here
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Hi Everyone, I've been floating around different sites for a while now.Started out in the LCIS group and thought that I'd be there forever but I got the preverbial curve ball thrown at me and ended up being diagnosed with IDC this April ,3 years after LCIS. Bummer. I had a BMS NS/SS with expanders in May and my exchange was done in August. I started Arimidex in July.My new silicon breasts are settling in and not in a good way.I know that I will need more surgery to get them right and that pisses me off to no end. I wanted all this stuff to be behind me and it's not. I've had multiple joint replacements and a lot of down time due to that .I guess I'm just tired of recouperating every year from one thing or another.I'm generally a pretty upbeat person but this cancer stuff is dragging me down!
Anyway, I wanted to respond to Shelia about pap smears. I see my Gyn every 6 months and at each visit i have a vaginal ultrasound and was having pap smears done but recently the pap smears are being done every year.I've only had 1 abnormal result a few years ago and nothing since.
Barbara
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momof2infla-I had a lumpectomy with rads. If I had had a MX I would not have had to have rads. I had an oncotype dx done and I scored a 23 which gave me a 14% chance of recurrance. If I had done chemo it would only benefit me by 2 to 3% and I had two MO's tell me they did not feel that it was worth it so I did not do chemo. I think the mammo print test is similar to the oncotype dx. Count yourself lucky that you did not have to do rads. I did it ended up with permanant nerve damamge and will now be having a MX with reconstruction to get rid of the pain. Reconstruction is now more difficult because I had radiation and have the damaged tissue from that. I am also on Tamoxifen for 5 years. But we all worry about that what if. I still worry about that as well but praying one day that will go away.
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I don't want to have reconstruction on my missing breast because I don't want anymore intractable pain. I am thinking of getting the other breast reduced so it looks nearly the same size as my other....like a tripleAAA...and no more bras! Has anyone had a breast reduction and do they cause alot of pain?
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Joan811 - My oncologist said she first was going by her experience with many other patients. The fact that I chose mastectomy over lumpectomy seemed to make a difference to her. She ran me through Adjuvent! Online which is not a genomic test, but a large database that uses the pathology findings. That showed that my chance of recurrence with both hormone therapy and chemo would only be increased by about 2% over hormone therapy alone. She also ordered the Oncotype DX at my request. My score was 18 (low limit of intermediate range), but still indicated only 2-3% increase in protection. My onc was not pressuring me one way or the other, but was in complete agreement with my decision to opt out of chemo. I know that 2% is a real number that represents real women, but I choose to take that 2% chance....
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rachelvk - I kept a diary as a teenager, but never as an adult. When I was feeling very philosophical about life right at the beginning of all this I started writing a bit. I did find it a good way to get rid of some of the anger, which I've really gotten past. I have been taking photos of myself during this whole journey and I continue with that. Looking at the pictures really helps me to remember what I've gone through this year and how far I've come. So, each person deals with it in her own way I guess!0
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momof3infla - Radiation is typically done after lumpectomy, not after mastectomy because all the tissue surrounding the tumor has been removed. I'm sure there are exceptions when the tumor is very close to the skin or chest wall, but as a general rule this is the case.
The Mammaprint test is not to determine if radiation is necessary. It is similar to the Oncotype DX test and helps to determine if chemotherapy is necessary. Here's a page on BCO that describes it:
http://www.breastcancer.org/symptoms/testing/types/mammaprint.jsp
My case is similar to yours (except I had ILC and DCIS). I had BMX so no radiation. My Adjuvent! Online and Oncotype DX both indicated that chemo would only add a minimal increase in protection over hormone therapy alone so my oncologist didn't recommend it.
I will be having 6 month oncology visits and bloodwork, which will include full metabolic panel, blood count, and tumor marker levels. Other than a baseline bone density test (because I'm taking Arimidex instead of Tamoxifen) I haven't have any scans at all, even after BC diagnosis. Since my cancers were quite small, found early, were "well behaved", and I had no other physical complaints the BS and MO felt the radiation of PET, CT, and bone scans wasn't warranted. I was a little uncomfortable with that at first, but I'm OK with it now. I'll be in close tabs with both of them over the next 5 years.
Congrats on all your "good news"!!!
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Thanks TinaT, you just eased my mind a LOT!
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Had my first mammo today... took me 7 months after the rads...was sooo scared......GOOD NEWS. 1-2-3 done and everything is just fine.YAY.......
When will we ever stop worrying??????????
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Hey I forgot...lots of newbees...sorry but welcome.....best buch of sistas you can find...Good luck everyone...God bless.hugggggggs K0
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Welcome to our new sisters.
DocBabs...May i ask you why you were having pap smear and VU every 6 months?
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Congratulations granny you just graduated (((♥HUGS♥)))
Good Night All.
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Granny - GREAT news on the mammo - and no, of course we never stop worrying. Maybe when I'm 90....
Tina - Thanks for explaining your decision path (no chemo, no rads).
Because I did not have mastectomy, there will always be concern that if I could grow a tumor in my past, I could do it again.
I have asked about MRI on other side and CT or Pet scan but was told not to worry about that.
Have a good night, all!0 -
Sheila, After I had the one abnormal pap, maybe 10 years ago, my Gyn wanted to do them every 6 months. Then He died 2 years ago and I started with another Gyn.He switched my paps to once a year but wanted to do the VU every 6 months.I think both were and are just be cautious.
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Tina, I could not get my pictures out of Picasa to post.I'm not much happier these days with the new girls.For one , they seem to be getting bigger! Not really sure how that's possible.My scars especially on the left are nasty, a lot of skin puckering.I know that the actual incision line should fade but the puckering will not go away. Also when I lie down in bed both breasts slide off to the side leaving huge dents in both breasts.This cannot be normal? I have to wait at least 6 months for complete healing but it's going to be the longest 6 months I've ever seen.
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DocBabs - So sorry things aren't going well. I've read that things do relax and settle after exchange so that could explain them looking larger I suppose. Mine have actually gone down a bit due to the initial swelling I suppose. Ack! Everybody is just so different so there's no predicting exactly what's going to happen. Stressful.....0
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Granny................................congrats.........................you done good.
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I am having two different pathology reports. Some pathologists think that the biopsy specimen is stage 0 (DCIS) others think that it's a stage 1. The doctor at Vanderbilt Tn. tells me that there is no way to tell until it is removed. Two different surgeons tell me that I need a MX. I wish the biopsy could be more reliable. The tumor has grown so fast that it leans more toward invasive on assessment. It was 1inch when biopsied.
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Welcome RubieSlippers - Glad you found us but sorry you have to be here with us. The majority of the time the biopsy report will give you enough creditable information to make decisions on treatment options. If your cancer is that aggressive it sounds like you don't have time to wait around for more testing. Right now you are most likely being bombarded with tons of information and your head is in a fast spin. We have all been there and this is probably the most difficult part. I would go with the doctor I felt most comfortable with - decisions, decisions??? I am sure some one else will come along and render some good advice. In the meantime, good luck to you.
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Welcome to all the new ladies. Everyone here is so helpful and responsive to any questions... and don't worry ask away at least someone can point you in the right direction!
I had a pap just last week... the first in almost 2 years. Glad I did even though I didn't have a problem and I'm in meno. Both by age and the "little white pill"
I also have trouble sleeping sometimes and use melatonin but use it because it also has benefits for those with BC - check out the natural girls thread. The melatonin I use is sublingual so it goes into the bloodstream faster, it's 2.5 mg. When I really can't sleep, I take an advil along with a cup of hot chocolate.... granny's recipe, not the one here but my DG.
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I had my first oncology appointment. I got a complete rundown on chemo (she is medical onco so...) but we are awaiting the oncotype score. She uses the score but the cancer center uses a much lower number for "no chemo needed". So, the waiting continues into next week. If chemo, I will choose a start date of 10/21 if I can. If no chemo, I move on to the radiation oncologist. I still have to work in dental surgery which was rescheduled, pushing me closer to my treatment dates. I have been forced out of my sense of well-being and back into the patient mode.
I hope each of you is doing well enough today, and can enjoy the week end.0 -
Joan, The waiting is always the hardest - not knowing what is to come next. Glad the onc did the oncotype test for you, mine didn't. The rad dr thought it was important for me so he scheduled it - he does all my tests now... the MRI, mamo, blood-work... I feel very confident in his opinions. Let us know how you are doing. (( hugs ))
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