SHOULD I get a 2nd opinion? urgent!!
I saw the MO my BS referred me to yesterday. Was 1st visit with MO, post BMX, and he gave me my prognosis. I felt like I was hit by a truck to learn that my 10-year survival rate, if I walked outta there, with NO hormonal drugs or such, would be like a 75% chance I'd be alive in 10 years from now (I'm 58 and post-meno). He said he'd UP that figure by 10% (85% total) if I were to take Arminidex for 2.5 years (to start in a few days), followed asap by 2.5 years of Tamoxifen. MO told me the COMBO of BOTH these meds increases survival rates. Huh??
Reason for being hit by a truck? I had a SLNB which had 0 BC in it. Final path rept showed large size area of DCIS, and within that, just a micro-size of invasive BC (1.5mm only). Also, I was positive for both the estrogen and progesterone receptors; no oncotype score given me (MO said chemo would be an overkill in my case, only a 1% increase in survival rate). Just to cover his bases, he's referring me to a BC radiolist MD tomorrow - to see if I'm a candidate for rads... likely not, he said, but WHAT?! After losing 2 of my breasts (only L breast had the BC)??
I'm scared to death of all the SEs for both drugs (had a near-fatal heart attack 5 years ago), and still have my uterus and ovaries. So, I said, you'll give me only a 15% survival rate 10 years out if I take the 5 years of both these meds (he affirmed).
A few yrs ago my mom underwent rads for stage IIb lung cancer (successfully; 4 yrs later she's clear of cancer), under the care of the nicest MO in the world (mom STILL loves him, as I do & my entire family). MO I met with yesterday kinda brushed aside my concern for aches & pains of arthritis from SEs (I like to walk & jog & swim & bike & dance), like "there's a PRICE to pay!" I didn't like it. Then, leaving the room, had to gasp "oh, and you WILL get hot flashes!" and I said, "I already do" and he said, "Not like these!" as he closed the door to write me a Rx.
Question I'm concerned about: what about the meds? This MO already called them in to my pharmacy & also to my insurance for a 3-month supply of Arminidex. What if I go to see this other Dr instead, and choose him (I may do so) to take care of my cancer care as my oncologist of choice going forward? DH thinks, since BOTH MOs work for the SAME hosital/medical center, they likely will NOT differ with their outcomes/prognosis/diagnosis.
What do YOU all think? (BTW, I typed in my full path report the other day in a separate msg on one of the boards on this web site, for reference; any tips/insight MUCH appreciated!!) Thank you!!!
THANK YOU!!!
Comments
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Balony to your doctor! Most people do not get horrible SEs from anti-hormonals (you just read about the ones that do, because everyone else is just out living their lives). I did 5 years of Arimidex with no problems what-so-ever!!!
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Get a second opinion and remember statistics are always at least 5 years if not 10 out of date (they have to be to collect the data) ......this guy seems way out of line in saying that.....
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I would absolutely get a second opinion, because that just doesn't sound right.
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I have not had hot flashes from Aromasin. I didn't have hot flashes, at least that I could discern as such, during natural menopause either. We're all different. Some get serious SEs from hormonals, most don't.
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I just spoke w/my CNP, who said, no problem, she'll arrange to have me (my choice) switch-over to Dr X, the MO that treated my mom. I'll know tomorrow date & time of when I see him. At first, appt was to be the "follow-up"/3-months-from-now... but I stated uniequivocably that I want to see Dr X like "now" - esp. w/regard to meds issue.
I agree: 10 yrs sounds a bit off to me, and most BC stuff I've read so far, seems to stick to the "five-year yardstick" re. prognosis/survival rates (which is likely what I thought of, which, I'm sure, had MUCH higher % of survival vs. a 10-year "yardstick" - right?). But, strange, MO I saw yesterday never even once alluded to ANY five-year %s.... strange, isn't it?? In any event, I'll be sure to ask Dr X when I do see him what the "five-year mark" for me (in my case) would be -- and I'll be more than happy to update my BC sisters on these boards!
Thank you! I DO feel now like 20,000 lbs. of weight is off my shoulders!! (Lesson: TRUST your gut instincts, eh?)
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I have almost nothing from tamoxifen. As far as tamoxifen goes, there's LESS heart attacks on it, but more strokes/blood clots.......RUTIN, which you can buy over the counter, helps stop blood clots from forming.....you can research this by doing a search "rutin and blood clots" and info will be found in scientific journals (as opposed to alternative meds). I hear your concerns. Your chances of a recurrence after matectomy is about 1%. I am questioning your survival stats.....I think they are higher than that. Try "Cancermath" and see what you get....if you go on the stats there for breast cancer and therapies, you'll also get stats according to "no therapies", "hormone", "chemo". As someone who had two bouts of atrial fibbrilations with my heart, I chose not to take hormones but am on tamoxifen now (and rutin) because of a second breast cancer (now have no breasts) that had LVI. Had there been no LVI, I probably wouldn't take the tamoxifen.
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If you had a better relationship with your first MO, you could have ask about the variance between the 5 & 10 year outcomes; but as you hear and read more you will find out that for women with ER+/PR+ (the slow-growing cancer) the 5 year mark is a milestone that many of us do reach, but for some the cancer shows up again a few years later. But that is not the big issue right now. The big issue is finding a MO you are comfortable with and who communicates well with you because you undoubtedly will have maky more questions arise. I think you probably did the right think making a switch.
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Thanks, bluepearl. From what I was told by MO I saw yesterday, that MO was adamant about me starting first on Arminidex (for 2.5 yrs), then immediately switching to the Tamoxifen (for 2.5) to complete the 5-yr total homonal pills treatment. I shudder when I read re. muscle/bone aches with the Arminidex, as I LOVE to walk and even jog and am/was active even to night before my BMX on April 25...
I also worry about SFX (stress fracture), as a few yrs ago I incurred what was deemed a "suspect stress fracture" of my L hip - with Ortho MD mandate of "NO walking for like 12-14 weeks." Ugh... talk about depression, and I was working as a temp w/no disability OR benefits! I soon re-gained all 40 lbs. I lost via WW
On 1/1/2012 I re-joined WW (248.6 lbs) and was at 158.6 lbs 3 days before I discovered my BC (first noticed grayish discoloration on outside of L breast, & then felt smallish - thumbnail-size lump a bit underneath... which led to.... yada yada). I've gained back about 10 lbs. but now have ONE of those JP drains still in me... but am determined to walk 3.1 miles (even if slowly!) in Saturday's local AHA heart walk (this coming Sunday marks my FIVE-year anniversary of my near-fatal MI on 05/12/2008!) Thanks & {{{hugs}}} to you, bluepearl!!
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Like you, I LOVE walking as well. Yes, the A.I.'s were of concern, but trying them will give you an idea of SE from them...tamoxifen is BONE friendly and given your history and small tumor, I'd go for tamoxifen altho A.I.'s are first treatment for postmenopausal...BUT given heart history and small tumor, tamoxifen I'd chose. That's just me, though. KEEP walking.....I hurt my metatarsal joint walking in rotten shoes five miles a day.....bought some good Nike's and walk only a mile a day as joint hurts...but 5 miles on Fridays......to a small cafe for coffee and chats.....I am fortunate too in that walks are mainly in the woods!!! Too bad you live so far, far away!!!! I am trying to lose weight too....CONGRATULATIONS on the front too!!!! I am doing the two=days on 500 calories, rest of the time glycemic.......with mastectomy, it looks like I have a beer belly (the boobs hid that! Ha!) so gotta work on that. Plus, have fatty liver AND liver cysts.....crikey.......!!!!!!
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Thanks, bluepearl... I live in Cleveland, OH, which is (sad to say) too far away
-- but (here's some humor, which I shared with DH & will to my WW meeting group this Saturday!) is that now, minus "Barbs & Babs" (my moniker I gave to my two, dear departed, girls... !) that NOW my past-meno (menopot they call it?) is now all too, sad to say, VERY AND HIGHLY visible - ewww!!!Actually (kind) BS left me like a "A" cub - as at the time I thought I'd want recon next year or later... now not so sure (leaning against it - tired of the da*n JP drains!! LOL).
Ah... the funnier side of BC, right??!! ROTFL! :O
Thx for your input, too - btw, w/meds & all... had 1 kind member post a reply stating she had ZERO SEs from the Arminidex (which MO proscribed for me yesterday, to start on). I'm gonna hold off until I can see my (new) MO, Dr X to get HIS own take on the meds... I'll keep you all posted
Thanks!!!
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I'd be interested to hear what the next MO has to say. According to the 2013 NCCN breast cancer treatment guidelines....if you are ER+ and HER2 -....and the tumor measures less than .5 cm, the standard of care says you should "consider" taking endocrine therapy. Furthermore, the OncotypeDX test is NOT recommended for tumors less than .5 cm either if the prognostics are favorable. Once, the tumor is greater than .5cm, then they recommend the OncotypeDX test AND they "recommend" endocrine therapy. I would register at the NCCN website and familiarize yourself with the Professional's version of the 2013 breast cancer guidelines, specifically page 17. Then I would scroll down to page 97 and read further about endocrine therapy.
Good luck.
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If you are more than 5 years post menopausal I would also discuss with the MO doing Zometa ...bone building infusions for 3 years. There's a clinical trial which is very encouraging that states, patients who are 5 years out of menopausal and who do 6 Zometa infusions over three years reduce their risk of recurrence significantly.
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Thank you for this, voraciousreader (I love to read, too -- see my comments posted in other board re. (reading) resource I highly recommend, "Unbroken"
I went thru meno like 7 yrs ago at 51 (I'm 58 now), and my dexa scan back in late 2010 showed early stages in some areas of osteopenia (my elderly mom still has osteoporosis; she's 83). So bone loss is an issue; haven't had a dexa scan yet (but I'm gonna as my new MO Dr X when I meet with him, hopefully soon!). I never want to hear again, sorry, you have a suspect SFX, NO walking or jogging for YOU!
THAT would kill me quicker than any BC will! LOLThank you for your ino - GREATLY appreciated!!
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Because of my osteopenia, I'm on Tamoxifen first (for 2.5 years) and then will switch to the AI. My MO recommends the AI first but the studies I've reviewed the difference in results based on the order is small. I do have hot flashes but they are manageable.
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Thank you, Golden01! Another point I'll be bringing up with my new MO, Dr X. Very interesting and helpul info, much appreciated! I'll be sure to report back on this board after I meet w/Dr X.
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Thank you, voraciousreader, ALSO for your 1st post (that I somehow missed before). VERY VERY intersting info you provided - much much more than I got from the MO I saw yesterday... my "big gripe" yesterday is that the office visit started with MO and NP telling me "the IDC was sooooooo small, like (MO drew it on a paper, like the size of a PINHEAD -- OK, maybe just a tiny tad larger - but NOT any bigger than this ----> o (filled in) figure!! THAT was IT for the "invasive" cancer hidden within my fair amount of DCIS... ONLY (per my final path report) like 1.5mm (and how does that dice with a cm figure - I hated math in school yrs ago, can't you tell?? LOL). Be assured, I'll be reporting back to all you kind ladies/BC sisters on these boards after I meet with my new MO ("please stay tuned"...)
For me, I know it's 1 thing to be cautious -- but with the (low) survival rate thrown at me like that was a "great great thing" (for 10 yrs) -- vs. what I had expected for such a micro amount?? and referring me to a rads MD for HIS take on this?? I"m kinda thinking - shall I say it - "OVERKILL" here??
Going home, DH couldn't help but state, "geeze, hon, with a TINIEST bit of "micro" C you had?? 0 in the nodes, and with a BMX, YIKES! it scares me to think of what ladies in stage 2, 3, or 4 get for a "10-yr" figure were given... HOW depressing!! (I still wanna get a more realistic FIVE-year figure when I see my new MO, for sure!!) -
Turquoise, check the arimidex/hormonal threads..... You will see women with problems, but you wil also see others like Ruthbr who went through the therapy with few or no problems.
I had bad knees from decades of jogging, and am stiff as a board for a few minutes when I wake up in the morning or get up from a movie seat, but that's about it. You will see suggestions on anti-inflammatories like tumeric, prunes to conteract bone loss, and the major one: keep moving. Everyone is different, and also keep in mind taking a "break" for a month from the therapy, or switching to a similar anastrozole or even tamox, can make a difference. Don't give up yet....and get a MO with some communication skills. I'd like to see that guy have hot flashes ---a little sensitivity training. BTW, I have none...
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Ditto for me Golden although I started out on Arimidex - had no problems - and ONC switched me to Tamoxifen when I was dx with osteoporsis. We all know Arimidex attacks the bones and ONC was concerned with my bones issues it would make matters worse even with calcium, Vit D and Boniva, etc. Do have hot flashes too but nothing unmanageable. There are women who have horrific SEs from both drugs. I have a friend who couldnt tolerate either one - very sick on Arimidex and developed a clot on Tamoxifen which doesnt happen that often. She stopped taking anything and has now reached the 5 year mark. My sister in law has reached that goal too and said she feels a lot better not taking Tamoxifen anymore.
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Thanks, Chris13! Ruthbru kindly replied to my post, which gave me hope re: SEs. DH is of the opinion, (as everyone is different), to at least try the meds, and take it from there. I have to agree. As for the new MO I'll be going to, he is a DREAM walking (ask my 83 yr old mom and my family!
. I did NOT think it was a funny OR nice comment; which is WHY I'm switching to a different (and much better!!) MO. I feel a LOT better NOW, at this moment, vs. after meeting with him yesterday - - for having made this decision DH even said, since I'm so active, like you did, to KEEP MOVING. I even notice when I'm not active - ugh It really DOES make a difference - with a Dx of BC - or not!!! 1 more reason I'm gonna walk the 5K AHA Heart Walk this Saturday ... to celebrte BC outta me and to mark my 5-year survival anniversary of my near-fatal heart attack (100% blockage of my right coronary artery) on 05/12/2008! 
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Thank you, Ruthbru - I cannot tell you how much HOPE your reply & input has given me... DH stated yesterday how important it is for me to STAY active, and KEEP on moving (walking, biking, swimming, aerobic dancing, vists to my healthclub, WW)... I'm sure it will help.
Re: WW, I was really encouraged to learn that having a BMI of under 25 is CRITICAL in helping reduce a chance of BC recurrence! Wow! Was that an eye-opener for me or what... got MORE work to do! (I'm now at 32, working downwards in the weightloss area.... !)
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Thanks, elimar: I feel sooo much better in having requested the "switchover." Best yet my new MO successfully treated my dear mom a few yrs ago (stage 2b lung cancer) .. and I still say that in no small way likely HE was responsible for her rapid recovery afer her rads were done and to this day - 4 yrs later - her survival! (Her pet scan results a few days ago showed 0 lung cancer!!
You kind ladies all ROCK!! I wish I was wealthy to fly you all to my house & enjoy the party DH will throw for me this summer, a "celebration of LIFE" swim & cookout party in our yard - maybe we can Skype it ??? LOL!
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If you want some exercise buddies, come over to the 'Lets Post Our Daily Exercise' thread on the Fitness Forum. A great group of ladies in all stages of treatment and beyond. We also have a 'Wednesday Weigh In' thread, to (try to) keep ourselves accountable in that area too.
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Turquoise - I'm not a doctor of course, but they gave me an 85 percent survival with the 2b triple negative bc. (one positive node). Your 75-85 percent does not sound right to me. That said, I tend to accept any treatment that is recommended, to reduce risk. It also sounds like you should find a different MO.
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Thanks, Ruthbru! Being an active (Lifetime) WW member, I'm game for being "in"!
Just was notified by my local branch of my AHA chapter that I was chosen to obtain their "lifestyle achievement award" for 2013 this Saturday, due to my 5-yr MI anniversary this Sunday, and now, as of recently, my BC DX, BMX and recovery (survival!).I appreciate all your help!!
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Thanks for your input, placid... MO I saw yesterday stated figures given me were for TEN years out (from now). I tend to agree with another poster on these boards, who told me that (tell me if I'm mistaken here?) the FIVE-year "mark" is the "standard" timeframe given for BC prognosis, no? If that's true, I'm sure gonna ask my new MO I'll be seeing soon!
I'm also concerned why all the fuss for just a 1.5mm (microinvasion) tiny bit - size of this letter, no larger: o
Go figure, right?!
Reminds me of (a Shakespeare play?) "Much ado about (nearly) nothing"! LOL -
I'm on Arimidex and DO have side effects......but they are joint/muscle related and are treatable with Advil and movement. But there is absolutely NO HARM in a second opinion. I have also been a Vegan for the past 2.5 years..it helps with estrogen reduction, keeps my cells healthy with the good stuff, AND keeps weight under control.
Exercise, and eat right....and if a second opinion, no harm in any three of those options.
love,
michele
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Just the situation like you, i suggest you can take the anti-hormone therapy and the SEs not serious normally, no harm. in addition, if invovled widely, you also need a radiotheray. Interval history and phisical examine 6-10 months for 5years and then annually.
you are lucky one, the tumor is DCIS phase and don't worry.
best wishes
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turquoiseblue2,
I had over 7cm of multi-centric high grade DCIS with comedo necrosis. In the middle of that was 1mm of invasive cancer. I had a single MX and an SNB. I was node negative. I was 49 at the time of my diagnosis, and had just entered full menopause. My oncologist recommended against hormone therapy for me. He said my risk of local recurrence was only 1% - 2% and my risk of mets (i.e. the risk that I would not survive this diagnosis) was about 1%. He did not feel that hormone therapy was warranted with risk numbers that were so low. If I were to take hormone therapy, the main benefit would have been protection of my remaining breast - he estimated my lifetime risk to be diagnosed again to be about 22% - but that risk was spread out over 40 years, so basically it was just over a 1/2 a percent per year. Based on that, I decided to pass on hormone therapy.
A 10 year survival of 75% for a 1.5mm invasive cancer....? There's just no way that can be correct. Have you looked at CancerMath? Input your data here and see what comes out. I'd suggest using the pictogram to display the results - it's the easiest chart to understand. http://www.lifemath.net/cancer/breastcancer/therapy/index.php
So yes, I think a second opinion is definitely in order!
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How I appreciate your valued & helpful input, ladies! MO (I no longer have) did quote me (10 yrs from now) 75% survival, with an added 10% survival (= 85%) IF I were to begin 2.5 yrs of Arminidex (sp?) followed by 2.5 yrs of the Tamoxifen! Thus "75% if you (I) were to do nothing & just walk out of here right now."
I could NOT believe my ears... like I said, I felt like I was hit by a truck... especially since, right after I met him 1st time during the visit, & we shook hands, he was JUBILANT and ENTHUSIASTIC as to just how LUCKY I was, the DCIS with 1.5mm microinvasive cancer caught SO early... and how the IDC was sooo tiny.... but then thowing those stats at me (75%). UNBELIEVABLE. That, and a few more, reasons are why he is NO longer my MO.
I could just **** him for his having even throwing a referral to me to see a radiologist MD to explore whether or not I MAY need rads (even though this MO was highly doubtful I'd need it). My BS told me I would NOT need it (almost a "given"). I seriously questioned the MO's competency: if he DOUBTED I'd need rads, why did he even refer me to a rad MD?? I (and DH) are beginning to see just how much $$$ the BC cogwheel is (may) generate for these Drs. NOT happy with that one bit! (But at whose expense, right? MINE! Beesie, your own DX soulds a heck of a lot like mine! I agree with all that you said... I'd really like to know where he got those %s, with even no Oncotype score done! Also, I was told (and have read) that a FIVE-year stat "marker" is the "norm" when giving prognosis/survival for BC. ... but anyone please tell me if I'm wrong on that score.
As for the $$ cog, I am STILL (2 days now) awaiting call from office of the VP of whatever (MO's higher boss?) to get the "formal authorization" for me to get "unhinged" from the MO I will no longer see to the new one (I guess they're in the same "team" of care. I refused the MO's Rx, as I will not begin or do anyting re. the meds until I meet with my new (and TERRIFIC!) MO... but if only the dam* medical center will break down the silos & forget the bull**** & get me an APPT! Amazing... what a rollercoaster ride this has been! Sheeesshhh!!! :O
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