CALLING ALL STAGE I SISTERS
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I have been lurking here on this thread for some time now and feel it's time to join in if that's ok. I feel the same way that some of you ladies are feeling about nobody getting it especially family members. I am now 15 months out and still get moments of the what ifs. My family is ready to move on but it is very hard for me to. Don't get me wrong - I have many days where I don't think about BC that much but then there are some days when I think of all that I've been through and get really sad. By coming to these boards I know that I am not alone in how I feel and there are many other women who feel the same way. Can I join in that group hug?
Donna
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Thanks so much for your inputs. I just got a call from my BS and she said the MRI showed my rt. side is good but there were some spots in the surgerical side but given I just had surgery a couple weeks ago we will wait and do another MRI in 3 weeks to compare. Wow this is such a waiting game. I chose to go to the med onco before the onco test is back just to get a feel for what is happening. I want to see if there was no test what would his thoughts on chemo be.I have had one wrench thrown in to the mix each and every step of the way. My BS has a very so sure of herself attitude and is very patronizing when I question anything. I am the type of person that goes with the flow and does whatever I'm told but at the same time I am also the one that if there is a small chance of some side affect or anything little as it may be it will happpen. I just had 3 ankle surgeries to fix an ankle that should have been easy to fix.So when it comes to dealing with the littlest of chances of reoccurance I am leaning towards not taking any chances at all. Chemo scares me so but so does even a 2% chance of another cancer. especially since she was so shocked to find another at surgery.
I am going to med onc on thursday but in my head I think I have already made up my mind on chemo without the onco test. I'm not sure how this doc is gonna be with my decision. My BS keeps telling me oh you won't need it and your score will be low.How does she know?! She has already had some surprises with me already.She said for someone with a small stage 1 grade 1 cancer(2 now actually) my case has kept her busy.
Anyway I go on thursday and can't wait to at least get some of the process started even if its just a discussion. I just hope he listens to me not like my BS.
Thanks all
Vickie
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Vickie, everyone here will definitely tell you that we are all different and so you have to make the decision that only you ultimately will have to live with. As someone posted before, your BS is not the one who normally decides your ongoing course of treatment. I'm even surprised she is the one to order your Onco test but it's good that she did - cuts down on your med onc having to order it and making your wait even that much longer.
Going to the med onc before the results are back is a good thing. I recall other, earlier, posts from some of our sisters who were also told the same thing, that the onco score would probably be low and then the results came in high so please don't rule anything out. Med Onc may recommend chemo and then you will also get the oncotype score, and maybe go for another opinion, to help you decide.
Remember, whatever the outcome, we are all here for you.
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Welcome, Donna, to the world wide group hug!!
I agree, some days are harder to get through than others. Sometimes my "down times" last for a couple of weeks or more, then I'm okay for a while & then, BAM, I'm right back where I started. It's one foot forward - two steps back or sometimes two steps forward & one step back.
I could not make it without these sisters here. We will help each other.
{{hugs}}
Valerie
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I have been up for about 5 days now.I think i am finally facing it.well maybe.well maybe for now..
today i went for my mammo as my old one was outdated.my breasts are clear.it seems dr#1 did something right .BUT the nodes are still indeterminate mamographically.I have to see onc.tomorrow.I am bringing my tape recorder but i dont really know what to ask him.
who know what questions need to be addressed as he will offer me some kind of treatment?
K
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Newbie here! Stage 1 BMX 6 weeks ago. So glad to be here, sorta.
I know we'd all rather be somewhere else. But I know God has good plans for me. So, I'm just starting my journey and already have been greatly encouraged by you.Vickie--hard to play the waiting game, isn't it? Did all this come out of the blue for you? Do you have your initial path report? If so, then so will your onc. He/She will know or evaluate your best treatment. After my initial talk with my onc, his reccommendation was just tamoxifen for me. I've resisted. But started it yesterday. At least, once you leave the office and get your Onco tests back, you might be better able to ask some more detailed questions. I'm getting a 2nd opinion. Still not sure I need Tam. But I have even more questions now that I'll ask onc #2, then I did with the first one. And, you can always get a 2nd opinion. I guess going back for a mastectomy is not an option?
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This is a great site. Since being able to "talk"with gals that are going through BC it has given me a place to release some of my anxiety.I thank you all for that:)
Hi Happymom!
I was never given a MX as an option in the first place. This all came on as a surprise. I was mammoed, biopsed and operated on in a matter of 3 weeks. My BS is young ,a cutting edge type and so into all the latest and upcoming treatment which I saw as a great thing at first until I learned that the only options I was given was hers.After finding a second nodule I thought to myself I would have had an MX and then would be done with making decisions.Now I am so afraid not to be the most aggressive. i know the onco makes the call but my BS told me at first I was leaning both ways as far as chemo. Then she changed her mind. now i find out she really shouldn't be voicing her opinion. I know i will be recieving 7 weeks of rads and 5 years of tamoifen.Now that is my BS telling me not the onco so who knows.
I have thought about asking my BS about a MX but I don't think she would see that as an option. I am having a repeat MRI in 3 weeks before treatment starts because some spots showed up and we aren't sure if they are from the surgery or not so we have to wait till I heal more.
I am going to the med onco thurday with my questions so we will see.
Great thoughts andenergy to all!!!:))
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Thanks for the welcome Valerie! It's nice to know I can come here for support when I need it. I am looking forward to being part of this thread.
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Donna....We love to give hugs, as you read everything goes here. We have our little therapy group.
Dee....welcome and more questions you ask the better it is ans take notes during or after you get home. i kept a journal for almost a year after the my DX.
granny...This is #3 oncologist right?
♥
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More Hugs to All My Sisters
♥
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Sugar77, Shelia, Valjean and Karenien - thank you so much for your responses. Not the answers I wanted but I guess I'll just have to change my attitude and focus a bit. I wish I could 'know' in my mind that I am 'ok'. I see the onc tomorrow so I guess I'll just have to see what she says.
On a brighter note...I am meeting with a cosmetic tattoo artist to talk about 3D tat's
I wish they had temporary tattoo's so I could 'try them on' for a few days to make sure it is what I want... -
Michelle Ill be thinking of you tomorrow.
♥
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Michelle, have you ever been to TimTams website? You have to be invited and it is very secure, but there are women who have had the 3ds and they look really great. I met a woman who had nips made, but no color and she was excited to think she could have color tatooed on them.
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Michelle ~
Hugs for tomorrow!
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good morning to all!! Hope everyone can start their day with good thoughts and positive energy.
I have my first med onco appt. tomorrow and as excited about it as we waited for xmas day when we were kids.Thats crazy HUH.
I want to check him out before deciding on going for a second opinion.I want to give him the benefit of the doubt. Just becasue I'm not fond of my BS I am hopefully done in that dept.I thought I would see how he is and how he works in this hospital. I am going to a local hospital for all this instead of into Boston(I live very close to Cape cod) but have thought I made a mistake on that. I will make some decisions after tomorrow.No onco DX back yet but can get a feel for whether I will like him or not.
Anyway my best to everybody and finding you all has been a godsend to me.
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Hi all---what are 3D tatts? Can anyone explain? And I think "try-ons" is a really good idea, Michelle! They have them for little kids.
I know I'll need one for my right side. I also know the lady my PS uses. She's very good. Of course, it costs extra and not covered by ins. ??? (another subject! lol) inthepink--will be thinking of you tomorrow. Ask as detailed questions as you can. Maybe take your path report with you and have him spell out exactly what you're seeing. I'm doing that with onc #2. I didn't with #1. Keep us posted!
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Meece - I have checked out timtams site and will forever be grateful for Fumi's dedication to that site, it was so crucial to my decision making process when it came to reconstruction.
Happymom8285 - 3D tattoo's are really awesome if you don't want to do nipple recon or don't want projection. My favorite artist for 3D tats can be seen at www.vinniemyers.com
Thanks for the prayers, hugs and well wishes on my appointment. Here is the post tx f/u schedule: appointment with onc every 6 months with basic labs (CBC, Metabolic Panel) and physical exam. MRI every two years. Nothing else unless symptomatic... kind of a bit of a let down after the last 14 months of craziness. I also felt patronized when I expressed concern about lab draws once I remove the port. I have bilateral LE and even though it is mild and under control, I do have quit a bit of discomfort and still have flare ups. I refuse BP's in my arms and the nurses are very cool about taking my BP on my calf but they cannot do blood draws from the foot without dr orders. My Onc will not write the order for foot draws. I have researched this and have valid reasons for not wanting lab draws in my arms but do you think I could remember enough to make my point....Nooooooooooooooo!
Feeling a little let down...
As far as nipple tat's...why is everything so complicated? My PS is 200 miles away, the tat guy that works out of PS office only works there 2 days/month. When I asked if he had website with previous work, I was advised that all pic's are property of Doc's he works with so he has no portfolio. I cannot take a day off to go look at pictures and discuss shading, just to turn around and take another day off for tattoo's (if he can even do the type of tat's I want and based on our phone conversation it dose not seem like he has any idea of what I want as far as 3D tat's). Went to a local cosmetic tat artist and she was absolutely sweet and willing to learn but completely honest about her abilities and not willing to use me as a Guinea pig (love her!!!) then went to local tat place (best in town) and the guys there say they can do the tat's however not sure if they know enough about the precautions needed with implants and how much iron oxide there is in there ink (which can interfere with MRI/Scans). Not sure what to do now...maybe I'll email the guy in MD that I like and see if he is going to be in AZ any time in the next century...
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inthepink - I was excited about meeting my onc the first time because it meant we were that much closer to actively fighting the beast! I second Happymom, bring your pathology report with you and if you have one, bring a digital voice recorder as well. I recorded all my initial appointments with docs so that I could review the meetings at a later time, when my emotions were not so high. It was amazing what information I missed during the appointment. I remember I heard one word and suddenly that was all my mind could focus on, everything else was like Charlie Browns teacher "wah wha nah duh..."
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inthepink...We'll be thinking of you tomorrow.♥
I chose to stay very local with my appointments too all walking distance.
Michelle..i know this wasn't what you wanted to hear but at least you know your schedule now. How about mammogram? Is it ok to use the hand for Blood work/
Last year my oncologist was surprised that I was still not using my right arm.
But I still hand them my left arm for BP and blood draw.
Good Night All!
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Shelia - I told the onc I did not want any mammo's, I just don't see the value with Bilat MX. She actually agreed (apparently that was a big topic at the last onc meeting).
I find it amazing how uninformed doctors in general, especially onc's can be about LE. LE can develop at any time after lymph nodes are compromised weather it is immediately after surgery or 20 years later or never... I was one of the lucky ones and all it took was letting my guard down once, allowing my BP to be taken in my affected arm and WHAM - LE! I already had LE in my trunc and should have known better. Now I do and for me it comes down to risk tolerance. Yeah, I can have labs drawn from my hand, however ANY injury, bug bite, burn, ect can trigger a flare up and/or infection FOR ME. My doctor does not have to live with LE and it's many 'gifts' but I do. I am just not willing to take that risk and I don't think I should have to. What would they do if I had no arms??? They would have to draw blood from somewhere else. I know feet are not the first choice and it requires a little more work but it sure beats a flare up.
Whew - why couldn't I speak up like that at my appointment!!!
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Hello inthepink
I sensed the concern in your posts and wanted to extend my support. Yes you will find these boards to be quite a godsend. There are lots of great stories and good information. Although your surgeon may not have the best bed-side manner, I wanted to mention that (in my opinion) she's doing everything right and steering you in the right direction. My case is very similar to yours. During my lumpectomy, a second lump was discovered and removed. After testing it was determined I needed clearer margins so I needed a 2nd surgery a month later. It's not the fault of the surgeon or because someone misread the mammogram. Sometimes it just happens that way, they see stuff better "in person". And I'm glad the good doctor was alert and didn't just stick to the mammogram plan; if she had I would still have the 2nd lump still growing inside me. I am also HER2-. I don't think it is your surgeon's bias against chemo....it's that our type of cancer isn't as aggressive as HER2+ and therefore chemo isn't standard treatment for us. (PS- I completed 6 weeks of radiation. Started Tamoxifen a month ago. Last week I had my followup mammogram and it went great!)
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Hi everyone. Diagnosis 2/22/2010, IDC, Stage I, Grade 2, .9cm 0/3 nodes, ER+/PR+, HER2-, BRAC1/2- 3 surgeries before i got clear margins. Next step was going to be mastectomy which i'm grateful i didn't have to have. 34 radiation treatments..no chemo..now on femara for the next 5 years. I had a total hysterectomy/ovaries in 1999. I took premarin for about 4 or 5 years, but was advised to stop the hormones so I did. I was wondering since i've been off the hormones for quite some time and had clean mamos for so long how could I get a hormone driven cancer? I guess I was under the false pretense that because of the hysterectomy and not taking the hormones i was relatively safe. Man was I wrong. I still have days that I still can't believe it happened.
Doc says I have 95% cure rate which gives me a lot of confidence but on the other hand in the back of my mind I keep thinking what if I'm in that 5%. I know it's a crazy thought to have and I should be grateful my chances are so good. But my mind says to me "well you thought you would never get breast cancer in the first place". Anyone a few years into this that can put my mind at rest? I think some of it is that i'm so still so fatigued from the radiation and still healing from my radiation burn that i over think things. I guess i'm still very scared even though we caught it early.
P.S. Anyone else on Femara? Had any side effects?
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Good morning! Today is my 1st appt. with med onco and I am excited as wierd as that may sound.
My onco score is not back yet but wanted some input if anybody else out there feels the same as me.
My margins were in question by the pathologist. My BS took out a second small tumor that did in fact turn out to be cancer. Had a MRI next but it was too soon after surg so it has shown some other small spots. Going back in 3 weeks for a repeat. That in itself scares me a little that the BS and the path had a conference and my BS decided they would just radiate an extra week to cover that.
Given all this and my age and the fact that I always fall into the small percentage of anything I really wish the onco test didn't go out and just opted to do everything.
Also I read that the onco test scores are based on my taking tamoxifan for 5 years. What if that doesn't happen for 1 reason or another(bad side effects etc) does that mean my risks are higher?I have been doing some reading on Tamox and the side effects seem doable except that I had a hysterectomy 3 years ago because of horrible hormone fluctuations and went right onto HRT and was so loving feeling so good. Then had ankle surgery and a DVT and was told to get off the hormone therapy immediately. Of course now I suffer so once again from menapause symptons and if Tamox makes it worse I'm not sure I want to take it.I am only 49 so have a long way to being post menapausal.Also when I mentioned to my BS I have a history of DVT she just blew it off as nothing because it may have been from the ankle surgery which my ortho was so shocked at because it came way after and I was up and about so he thinks it was from the HRT. I think NOBODY knows so why should I take the chance on the Tamox. I guess I will find some of that out today with the onco.
Given all this I really am leaning towards chemo no matter what the odds are and onco score is. Does that sound crazy?!
I can really use some advice.
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Michelle - There is a woman on these boards who is a permanent makeup artist and they do 3-D tattoos. Her name is Judy and her screen name is FACECRAFTER. If you send her a PM she can help you find somebody in your area hopefully.
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Pink49 - no, it does NOT sound crazy. You have to do what you feel is best for you after being given all the available options and scenarios.
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hi everyone.the BS is dr #3 who i love.she sent me to the onc.the first one i saw.i love her.she told me it looks like 1 more node is involved.the 2 drs have to talk now.i am doin the happy dance.its looking good.I hope they all agree now.I love these new drs.
thanks sistas for telling me over and over again change dr.2nd opinion..very important.
God bless all of you.Love ya
K
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My onc said never use my left side for draws or BPs. Never. So even six years out, I only use my poor right arm, and hand. No, Seyla, they say no draws on that side at all, not even the hand. My veins which used to be prominent are very faint now. I asked the hosp. nurse before my last surgery to use my foot, and she also said not without dr. orders. Hmmmm.
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Not sure how many of you have ever had blood drawn from your foot, but let me say this... OUCH!!!! I had it done once in the doctors office a few years ago and it was the most painful thing I've ever had done and I by no means am a whimp! I pray I never have to have that done again. Those of you who have suggested it to your docs are much more brave than I. As a nurse I definitely don't like drawing blood out of a foot either because I know it hurts and you do have to have a doctors order to do it. Maybe it wouldn't be so bad if they used numbing cream. LOL!!! As for having blood draws and BP's in my affected arm I don't let them do that.
Hugs to all, especially you grannydukes on your second opinion!!
Renee
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I had blood taken from my foot...i almost killed the nurse who tried to do it.no one should be subjected to that kind of pain...that happened years ago and i can still feel it.
im still doin the happy dance.
Patoo thank you for telling me to get 2-3- even 4 opinions...thats they key you know...luv your dr.
God bless each and every one of you
K
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