CALLING ALL STAGE I SISTERS
Comments
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beth your surgery was right before mine, my PS said I need to wait at least 5 or 6 wks minimum before swap surgery after final fill,,,, and at least 3 full months following Mastectomy... so tissues are really more healed. Just wanted to mention that - - both BS & PS say it is actually safer to wait a bit longer - even a bit longer then the 6 weeks post last fill,,, not sure if any of your DRs mentioned that - i know the expanders are awful - i have only had one fill and second one is tomorrow - I was a 34 C so he says he wants to overfill me so when he places the implant in the tissue looks a bit more natural vs so stiff... by overfilling me and letting the skin get used to maybe 400 cc for 6 wks then swap and would be a better end result. anyways I just wanted to pass that on - you may already know about this and maybe just need to get the swaps done - I hope you will have a smooth surgery too, it is definitely a difficult time when dealing with reconstruction on top of healing from MX and beginning meds like TX.... blessings & strength to you,0 -
I had heard others say this but when I asked my PS she said there is no reason to wait. She does the exchange right after the last fill.
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It's interested how different the PS are. Some say change the dressings, some not. Some say ok to bathe some not. Some wait, some don't. My PS waits four months after final fill.
Bethq - good luck with the exchange!
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Thank you!
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Okie - when you say instant menopause - do you know if once you go on Tamoxifen and say you do stop having your period - after 5 yrs does it come back or permanently gone for good once the estrogen is gone? I am about to be 43 - I get my period regularly and it has not been inconsistent but I do get night sweats - drenching ones and terrible - really bad PMS and moodiness and tearful more so after the midway point.. just curious - once you are medically taking Tamoxifen - is the CHANGE to menopause fairly certain for rest of your life?0 -
ANY HELP CLARIFYING MY ONCA DX REPORT WOULD BE GREAT... not sure if my actual recurrence is 17 or 18% without doing anything or taking TX,, ????? and if it is that percent - does that also mean 17 or 18 percent likely to just get cancer in my left breast or a METS (distant recurrence if a stray escaped breast and bypassed the lymph node removed)...if I write up what my ONCA dx report indicates, can anyone please try to help me understand it better?
my score at top is a 9 (and what I am not so clear on is that means 9% risk based on me Taking the Tamoxifen - is that correct
someone prior had mentioned that my real risk may be 12 % - if I scored a 9... that is the confusing aspect for me - I was under the impression that if I get a 9 - assuming being treated with TX - that my actual risk was more like about 17 or 18 percent for a recurrence or new cancer in the breast
and the next score is a prediction of 7% for a distant recurrence within the next ten years.... assuming taking the TX for the 5 yrs...
my ER+ score is 8 - says anything over 6.5 is positive - so I am not at a the upper end of that scale that goes up to 12.5
my PR+ score is 9.5 - says anything over 5.5 is positive - so I AM at the upper end of PR+ scale that goes up to 10
has anyone else here been more PR+ vs ER+ and have any advice about the taking the Tamoxifen benefit based on the info above with my IDC, stage 1, grade 1?
I appreciate any thoughts.. thanks everyone
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Trying to figure out which thread to call "home" and I guess this one is the one. I have been saying I've had no side effects from Tamoxifen but since restarting it after the exchange I haven't slept well. I usually either take a Percocet or Lunesta (insurance only covers 15 per month) to get to sleep but if any noise wakes me I am up for the night. I know I need to ditch the Percocet but not sleeping is miserable. Maybe if I stick to Lunesta I will sleep the entire night since Percocet wears off in 4 hours.
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bethq, I have insomnia also, but after 1 or 2 nights of not sleeping well, the 3rd or 4th night, I usually get tired enough that I do sleep. It is frustrating. Make sure whatever you take does not interact with Tam. I have been taking longer walks and reading before I go to sleep...maybe it's helping. I have had insomnia for a long time, so it's not really a new SE for me. I have also tried Sleepy Time tea, but it tends to get me up because I have to pee!:). I am thankful I am not on steroids...NO sleep with those.
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Keepthefaith I have to get up at least twice to pee even without tea! I found I have been sleeping better on the couch and when I do the young adults kn the house aRe extra quiet so that works! Last night one of them was doing laundry at three am. Grr.
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Bethq: I read a recent study that found the effectiveness of tamoxifen was improved with melatonin. I talked with my Onc and she had read the study as well. My onc said it certainly wouldn't hurt to try it so I have. Though I wasn't having trouble sleeping on tamoxifen, the melatonin does knock me out -- so much so that I have cut the dose in half each night! Might be worth a try!
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Beth - try not taking the percocet - i found pain meds made me antsy and I could NOT sleep if they were in my system,,, they stay in system about 20 hrs after taking it too,,, even one pill, (so I read). Lunesta may not be strong enough - i believe it comes in 3 doses... i have great success drinking lactose free, fat free vit D enriched milk - and having a bedtime treat - the carbs and protein help me snooze and out into deep sleep,,, valarien root drops, honey and lemon mixed with tablespoon apple cider vinegar and down it in couple shots, i used to take an over the counter CVS brand docylymide succinate (unisom type) sleep aid tablet - i would break in half and take half the suggested dose and that worked - they still make it, no drowsy effect in am... i hope you won't try ambien - as that drug is highly addictive fast - very hard to wean off once begin taking for a month or two... so best to avoid at all costs... i do feel it is the energy from pain meds that is keeping you up and making you restless,,,, as that was what happened to me - now I take nothing and sleeping well again... good luck and rest - even if not sleeping - rest,,
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Sometimes I have a hard time sleeping because of aches. I like benadryl it helps sleep and itching. I can't wait to be off the pills.
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Bethq and Keep the Faith---I have struggled with insomnia for years--prior to B.C. and now moreso--it is a side effect of the Arimidex. I think with Tamoxifen you have to be very careful with anti-depressants, but sometimes a low dose of one is all you need to get a sleep buzz. Have you had any luck with drinking warm milk or cocoa? The tryptophan in the milk can sometimes help. I also have a script for generic Xanax and I break them in 1/2 as a full one will make me drag the next day.
Sparkle- I know it is days later, but what lab did your Oncotype DX test? Mine was done by Genomic Labs in CA. My score was 8, with a 6% reoccurrence with drug therapy. I couldn't read the second page it was so tiny, but my MO said if I had a score below 10, I was ok to skip chemo I can't remember if it was 10 or 18 at which chemo was considered. I am sure at 18 he would have said I needed it. and maybe we were going to debate it if it was between 10-18. I think all his remarks were tempered by the pathology report from my surgery as well. I had a small tumor, stage 1, grade 1. I am so blessed to have this man as my doctor.
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Hi Ladies - I too have problem with insomnia
too much thinking and fearing about future, have not decided about any anty-depressand till I make my decision to take or not to take Tamoxifen , I would help myself with Ativan from time to time, with not much sleep I am not getting stronger0 -
My oncodx was a 34 but I am not concerned. I am not a number.
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Hello ladies, new to this thread. I just read thru a few pages and I am glad I found this thread. My bs says I don't need radiation and doubts I need chemo, but of course MO will decide that. When I met with bs, ps and mo preop, I was told they would do the onco test..now this morning when the bs called she said they didn't do it ! Im pissed about that..it makes me feel like just a number. Of course I don't want chemo but last year I was dx'd with lcis, had lumpectomy with NO further treatment, look where I am now ! I cant take tamox because of clot risk and the fact the I am a smoker (trying to quit). I don't want to be sitting in this position a year from now because they didn't do anything else. Bs said my tumor was smaller than originally thought 1.8mm. How does it go from 5cm's to 1.8mm's ??? All I do is worry about this..to the point where it consumes me.
Another, when the bs first called with results (last Thursday) she said they found ALH in the opposite breast so I confirmed that this am when I was talking to MY bs..she said "no it was LCIS" so I said..precancer? she said no it is not precancer ! WTH ?? Last year I was told that LCIS is precancer. I am going to one of the the best cancer centers in boston (dana farber)...but I just don't trust them
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Ganzgirl. My MO is at Dana Farber. They have the pathology reports on line for you to see if you login to Patient Gateway. It depends how recent they are but everything from my surgery was available once the doctor had spoken to me in person (Sometimes they show up with a date after which you can access them directly). That may help with some of the confusion. I tnk some refer to LCIS as precancer but other just as a marker for a higher risk of invasive cancer. You can always ask about the Oncotype test. My MO sent of for it a lttle while after my lumpectomy as they keep the tissue.
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BB, my onco was a 21 and I opted for chemo also. My MO telling me it would benefit me by about 5-6%...nice that we get so many different answers! Regardless, I don't regret my decision. I hope your SE's diminish as time passes. I am almost one year from DX and finally feeling closer to 'normal' than I have since my DX. It seems like it takes a while, but MO also told me it takes about as long to recover as it took for your treatment. I think she was right about that!
ganzgirl, sorry you are confused about your DX... I think LCIS is Lobular Carcinoma In Situ. In Situ meaning that it is confined to the lobes, but is a malignancy. When it becomes invasive and goes outside the lobes, it becomes ILC. Invasive Lobular Carcinoma. Same with Ductal. I had DCIS and IDC both. Maybe the ALH was what she was referring to as "pre-cancer"....? I believe you will be treated using the guidelines from the "worst" DX of your pathology report. It can be very confusing. When in doubt, keep asking questions! Good luck.
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Thought I would chime in to the discussion about Onco type. I am 59 (58 when diagnosed)). My score was 21 and my oncologist said a score of 31 or over would she consider me getting chemo. With my score of 21 chemo would only benefit me about 2% to 3%. My recurrence rate is 13% with hormone therapy. I declined Tamoxifen due to the scary side-effects. That decision was agonizing for me, but I am fine with it now. I am just over the one year mark of my diagnosis and sort of feeling back to normal, but it's a new "normal" for sure.
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Redheaded1 - yes mine was done there too -
Genomic Labs in CA
, my score was a 9 and said recurrence (with tamoxifen would be 7%) so I assume without tamoxifen about a 15% recurrence rate prediction - - - so for a 1.1.cm total tumors - two small next to one another - not near chest wall! RT MX so tissue is out and 1 Sent Node removed - cancer free in that = I feel like the DRs did great job with surgery - no infection, my reconstruction is at half way mark and I am finally sleeping again - taking just 25mg zoloft and that DOES allow me to sleep but requires a good 8 1/2 hrs to sleep - but i say sleep and rest and peace of mind helps the body heal,,, i just feel adding a tamoxifen daily and dealing with SEs - not going to be good for me just now... i feel more at ease not taking it, that seems to have been my original GUT instinct and still is,,,, thank you for sharing your info - I hope we both will do well and not have recurrences,,, EVER!!!
I am reading PINK LEMONADE - a survivors story - she was 46 at DX and in both breasts - it is GREAT Book so far - google it.. g night ladies
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Rosecal - I love that you are not taking it - I may join you by not taking it too after many weeks considering if can bring self to embrace it - so far feel can't,, you inspire me to not take it as your DX is very similar to mine and I believe you think like I do, if it ain't broken don't try to fix it,,, we may never see any recurrences - hopefully!!
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I have an Oncotype score of 18. My first Onco doc left it up to me to do chemo and/or hormone therapy. My new Onco doc recommends I do both chemo and hormone therapy based on my path report. I am struggling whether to do hormone therapy. Both docs say to do it for 10 years. That is a long time for me with such crazy SE especially strokes since both my mom and sister had strokes. I haven't set up the time to start chemo yet, since I'm focusing on my upcoming exchange which my doc says chemo can wait after the surgery.
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BosumB, my doc said the same thing, the studies that are out this year, the new recommendation for pre-menopausal women is 10 years.
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Bosum, that scares me too, the fast forward aging process. I told my husband that he better enjoy my looks now because I'll probably age 10-15 yrs from the drug. You aren't vain, it's ran through my mind a lot lately especially since I've always been told I look so young for my age and are shocked when they find out I'm 40. People assume I'm in my late 20's or early 30's and I get carded all the time or get mistaken for being my son's sister or even girlfriend(he gets so mad and grossed out hehe). I said Karma is going to bite me in the butt and speed everything so that it will make me look older than my age.
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BB, I know what you mean about the HT. My MO is starting me with Tam because I have bone loss...then, will do a bone density test in a couple of yrs and see where I'm at. May switch then. Vit D level still on the low side. Nurse called today. Will see what MO wants to do to get it up. 24.8 from 17 a few months ago when I started supplements. Improving, but not there. I hate this! My half sister was DX'd at age 27; she took Tam for 2 yrs and quit because of the SE's. She is now 42. My Mom was 60 when she was DX'd. Don't think she took HT...she's now 80. Sometimes I wonder if it's too much.
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My understanding is that the New Study applies primariy to those who are on Tamoxifen or have been on Tamoxifen, or switched from AI to a SERM. I am sure others have different views on it, but I re-read it on this website, and that's what I take away from it.
Bosum, my Oncologist, who is wonderful, told me that 1 year of Arimidex does not get me very far at all, but 3 years gets me t0 50% reduction of risk and that at 5 years, "i would be golden". I saw him on Wed, and we had this discussion, sorta, cause I don't want to ask about extending it, and he repeated to me again, 5 years--you are golden. Again, I had very low Oncotype and very small tumor. I don't think you can predict what happens w/o. I asked that question when he wrote my first script, and he said nobody knows, but that they had done a significant survey of women who chose not to do hormone therapy, that later had a re-occurrence and they asked them, what percentage reduction would have made the pill worthwhile, and the response was predominately, ANY reduction, however small........
Also Bosum, I didn't do chemo and my memory is completely fried. I am barely 57 and I can't remember anything anymore.....Like whether I ate lunch, or what I had to eat, or how to do an exercise from one day to the next.......so not sure if it is all the chemo brain or the stress of the cancer DX.
I want to know if anyone has had their monocyte # in their CBC be elevated without the percentage # being above the range? My MO told me my tests were great, but they just hit my "View your chart" on line account and that one value is in red as it is above the reference range......( I know, I'd tell everyone else to call the doc and ask..........and I probably will, but thought I'd bounce it off the "committee here" first...LOL>
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After I declined Tamoxifen I wanted to know my relapse percentage since the Onco Dx test does not address that. It only deals with percentages with hormone therapy. My medical oncologist ran some computer models based on my grade and type of tumor, etc. This is basically what it said: No additional therapy including chemo and hormone therapy -- 78 out of 100 women are alive and without cancer in 10 years; 18 out of 100 women relapse; 4 out of 100 women die of other causes. 18% isn't a greatest number however the percentage did not double by not taking Tamoxifen -- from 13% (Onco DX test) to 26%. My medical oncologist said "We just don't know who those 18 women are" (who get a relapse) She was fine with my decision and didn't pressure me in any way. No one knows if stray cancer get by and get lodged somewhere else in the body. I know one can be node negative and still come up with a relapse down the road. We all have to feel good with the decisions we make regarding cancer therapy and be at peace with ourself. Thank you Sparkle and BosumBlue for your comments. I wish everyone good health and no recurrences.
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Hi Ganzgirl201 and Other Stage 1 Sisters -
Hey 201, I live just outside of Boston - small world! I joined the "sisterhood" as of this past Friday, so I am just getting my feet wet here. My cancer is small, but new since last year. Only half a centimeter, but very well could have broken through the membrane basement. I am scheduled for a lumpectomy on Sept 30th, then progressing to 6 week radiation, then to Aromatase inhibitor therapy. I also will be a lymph node removal (1-3) to check for spread. They will also do the onco test. I don't really know why, the growth is so small. Oh well, my BS just finished a Fellowship at Sloane Kettering Cancer Center - having performed anywhere from 600-700 surgeries.
This Spring/Summer season has not been kind. I am at the tail end of recovering from double broken ankles. Started my normal routine back at work for about one month and this saga gets started.
MarieBernice6234
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Welcome Marie.
Sorry to hear that Bosum, unfortunately we have to be our own advocate sometimes almost shouting to be heard especially when they just brush off our concerns without really taking in everything into consideration. I think docs sometimes forget that we are not all cookie cutter cases and don't fit all neatly in a category of x, y, z= this is your treatment= no other deviation.
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Welcome, Marie, sorry you have to be here, but it is a great place to have questions answered and share opinions.
BB, were you thinking of the cancer math site? I can't remember the site address....just like I can't remember my name half the time! I, too, am developing facial hair and going bald at the same time. UGH!! Not too self-conscious!
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