MIDDLE-AGED WOMEN 40-60ish
Comments
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Elimar, you did fine. You explained it great. you did not add to the confusion, it is just sometime's i am a little dumb. today was a dumb day for me, and i hope i did not add to the confusion either. btw, were you at the meet-up w/ hbcheryl and slowdeep and badger etc? i was gonna go, had a temporary pitbull pup, and couldnt go, but i guess some of em went to hollywood blvd,and that is like 10 minutes from my house. okay, i am in pain, dumb, live too close to hollywood. please kill me now!!!
3rdtimenow.... i am speechless, and so so sorry to hear that about you.. but now you can make some friends here, and learn lots, and seriously, it gave me something to do,to come here and get to know some outstanding women, when i wasnt interested in anything, really. BCO did save my sanity, and did make me understand things, and simply made me feel not so alone. welcome..
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3rdtime, That is awfulness to the third power! Totally not fair! Let me get this straight: First time, one breast...lumpectomy+; second time, new primary in other breast...BMx+; and now a recurrence from the second BC? So, nothing ever came back from the first surgery and treatment then? All you can do to not feel like a three time loser is to take care of business and become a three time cancer butt-kicker. You will find many threads on BCO with women who understand, so you definitely are not alone. We are all here.
I forgot to say WELCOME!
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kathec, Don't worry, you get a pass due to chemo-brain and L.A. smog-brain. No I was not on Hollywood Blvd., but that Badger sure gets around!
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Elimar, I did a lot of research and sole searching about my treatment and talked to a lot of people and made my decision based on the tests and information I got my hands on and believe me information I got. Me and my husband both agreed with the doctors that it would benefit me based on the information we have the family history I have and the fight I wanted to give myself. I took all my test results examined each based on its own merit then listened to different opinions and then went with my gut so I guess I am as sure as any of us can be that the decision I made about my treatment was made right. I have to say I would do it again if need be even as tough as it has been. I pray to God I don't have to ever worry about it again but I wanted to give myself the best chance I thought I had to see that it doesn't get any further even if just a tiny chance. That is still a chance. My doctors based the decision on me,my tests results and my family and their professional opinion.
I appreciate you throwing it out there but I can assure you this decision was not made lightly but it was the best one for me. Hugs and love to all....
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Deb, Did you have the OncotypeDx test done then? It sound like the chemo was really rough on you, so I do hope it achieved its aim to prevent recurrence. Yes, that is what it is all about. Is radiation next?
p.s. Really not trying to give you the third degree interrogation. I am just not as trusting of doctors and always wonder how they arrive at their decisions. I wonder this of my own doctors all the time. So, it is not you, believe me.
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Thank you for the warm welcome, Kathec and Elimar, you're right, I had a lumpectomy, chemo and radiation the first time and that breast is still fine. The other 2 were in the other breast, but not a recurrence, this is a new primary cancer, all 3 different. I had a lumpectomy the 2nd time with local radiation and 1 year later, another scare, another biopsy that turned out to be benign, but I decided to have the mastectomy to avoid this happening again, 2 years later here I go again, so much for that. Stephanie
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The Oncotype test is for early stage ER+ breast cancer. It determines if chemo will be effective. The fact that 3rd time has just stated that she recurred, indicates that the chemo probably wasn't effective the first time. But, the Oncotype test is also assuming you take Tamoxifen or another AI for at least 5 years.
It used to be assumed that grade had something to do with the Oncotype result, but numbers since the testing began have shown that they are all over the place. Someone with grade 1 might score 23 while someone who is grade 2 might only be 6. Normally grade 3 will get chemo, no questions asked.
Because I didn't get chemo on diagnosis, my first line of defence IF I recur will be Tamoxifen! That is how effective Tamoxifen is. I'd rather have skipped the chemo that even my surgeon said "Save the big guns for next time." and have Tamoxifen up my sleeve than have blown the opportunity to ever use those stronger chemos again if I recur. There tends to be a pretty strong 30% recurrence across the board, so if I only reduce my risk by 10% with chemo, that is only 3%!!! Or, say your onc told you that you had a 20% chance of recurrence and chemo would give you a 10% reduction - again, that is only 2%!! A lot of chemo is thrown at women for th wrong reason but thankfully, on the 5 1/2 years I've been on this forum I have seen huge changes.
Also, ER+ TENDS to be a slow growing breast cancer. I saw my onc every year until year 4 and now I see her every 6 months. Some women are getting dismissed at 5 years and that's when my risk begins!!!! We HAVE to be our own advocates and ask all the tough questions. The only "good" thing is that if an ER+ cancer occurs, it does tend to be slow growing and can be caught again.
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Hi Barbie, Just to clarify things, I did not have a recurrence the second and third were new primary cancers, all completely different types. I had chemo the first time and went 11 years before a new cancer in the other breast and I took tamoxifn for 5 years. I don't yet know about the ER status, but the other 2 were ER+ I will ask my doc about oncotype test. Happy to have found you ladies. Stephanie
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Hi Barbie, Just to clarify things, I did not have a recurrence the second and third were new primary cancers, all completely different types. I had chemo the first time and went 11 years before a new cancer in the other breast and I took tamoxifn for 5 years. Stephanie
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Yes, Barbe, did you see my call for assistance? But it was not pertaining to 3rdtime. I was hoping you could further explain where I was coming from regarding what I wrote to Debster. To me, hers seems like a small, hormone receptive cancer, but they are all gung-ho about chemo for her. I don't get it. I guess there is some factor which I have not heard her mention that points to going with the chemo.
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My response was to Debster, but brought in 3rd time mistakenly (it's hard from all the lines what is a new primary or a recurrence).
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Momine - the basics are what I was explaining about football. There is also blocking where one player crashes as you said into another in order to clear a path for the guy who has the ball. It is a very physical game with a lot of exciting plays and scoring etc. I love it! I like basketball too, but I'm more of a college fan for football and basketball. GO GATORS
I had my second treatment of A/C yesterday and I'm feeling it today. My hair is starting to come out quicker now and I'm toying with shaving it. I'm in sales, so I have to make that choice so I can start wearing wigs. I would rather be going through this in the winter since here in Florida it is much nicer imho. I'm going to sweat my arse off this summer.
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Hi, I posted my experience on another board but noticed people on this board talking about how doctors seem to think they know more about our bodies than we do.
I had the worst appointment in my life though. I had been told from the genetic councilor that I may want to consider a double mastectomy and removal of my ovaries because of my family history of breast cancer. We also had discussed a complex cyst that last time I was there and he said I could consider having it biopsied.. This time he was totally against everything. Then said maybe I should have a double mastectomy if I was so concerned about a cyst and then I should see a surgeon to have it removed, I said I don't want surgery just because and have more tissue taken out of my breast I want a biopsy, Then he was saying I was misinformed and he was the doctor and I should trust him- That when he takes his car to the mechanic he doesn't tell the mechanic how to fix it. He went on and on and on and finally I got where I was just in tears. I have been very depressed lately and very weepy. He told me that Tamoxifen can cause depression but that wasn't my problem- My problem was I was fixated on my breasts and I needed to get past that- That treatment was over and I am being watched and he was the doctor and I needed to trust him to take care of me.
I ended up sitting there crying. I felt hopeless - and he started to rub my leg saying U are ok- U will be ok- Your fine-- Why are you so sad today? You are not normally like that? Then he said you want an MRI? We will give you one if that will help you. I will also send you to your surgeon to talk to him about your biopsy.
I wanted to say he had been lecturing me and I told him I was depressed so why would I not be sad the idiot!!
I got dressed tried to sneak down the hall the opposite direction of where he was standing at the desk- He said come here stand by me while I reorder your meds and then he walked me to the room to make my appointments and told me standing in the hallway-- That if I chose a double mastectomy it would be because of choice not because of genetics- He said do you want one? I said NOOOO..
I wanted to run the h**** out of there and not sure where to find a new doctor..
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Homemom, lol! Yes, I realize they were the basics of of football, but you might as well have been writing Chinese. All I could extract is that the teams take turns trying to run 10 yards with the ball, while the other team tries to beat them up enough to stop them.
ndgrrl, I so hate when doctors do that crap. Can you find another doc?
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This is my second oncologist - the first one was so busy he pawned me off on his nurse practioner and I did not feel comfortable seeing a nurse practioner. He also had no time to answer any questions when I saw him so I switched to this new one from Columbia. He seemed very nice and would answer questions the first two times I saw him, but this time - grrrrrr... he said he had had a bad week well sheesh, do not take it out on me just because I want something done with a cyst that should have been taken out when I had bc surgery last August- they knew about that cyst then, its located RIGHT were the cancer was. My sister also had a cyst in there and luckily by a fluke they biopsied it and it was a 2nd cancer. SO that is why I am so worried. Her cancer was in same location, and same size as mine. I bugged her to get a mammo and she was diagnosed 2 months after me. SO its been great source of stress to me. The onc told me I was not my sister on and on. Well yes I know this but I have this horrible strong feeling- Same feeling I had before I got that first ever mammo that found my cancer. Doctors grrrr..
To get another doctor I will have to go out of that hospital and drive another hour- but I guess what is 3 hours to drive compared to 2- I am already on the road.
I am also going to see my GP about my depression, I have never never ever been this way before and I think the changing or my hormones has to be doing it. I am NOT that fixated on my breasts to cause it as he said .. GRRRRR .. So he felt I needed to remove them both.. UMMM NOOO.. Not unless I do find more cancer, why risk it? sheeesh
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ndgrrl, ask him if when he is at his mechanics if he is fixated on his CAR. Duh! Tell him to put in writing that your cyst is NOT cancerous and then you will feel so much better! I bet you'll get your biopsy. I can't believe a doctor being so blase with a previous cancer patient! I had four weird lumps on me and all 4 got biopsied! Two just off my scar line, one on my arm and one deep within my abdomen! They were all taken out, no questions asked as, of course, no one could guarantee that they weren't cancer too.
Next time you go see him, tell him you have a tooth that is giving you trouble and watch his face! hehehehehheehe
I was sent to a Pacemaker Clinic as it was determined by my cardiologist and another hospital ER that I needed a pacemaker. At the first consult the doctor kept ignoring me and told me that I was blacking out because I had LOW blood pressure even though I told him I was on meds for HIGH blood pressure. He told me that when I felt like I was going to faint to just lie down and put my feet up and tell people to go away and leave me alone. He also said the "sudden death" was the perfect way to go!! I went home and phoned the clinic the next day and complained. I was brought back in to the same idiot (even though I said I didn't want to see him) and he said he mis-understood what I was saying when I told him I had high blood pressure!?!?!?! I got a pacemaker less than a week later and my heart uses it over 10% of the time (they get readings when I go in to get it checked), so it was very much needed!! Idiot.
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ndgrrl, Sorry you had to go through that. Personally, I can't stand that paternalistic approach from doctors. Ick! My two cents? If you do not choose mastectomy (based on what the genetic counselor determined,) then you certainly need quality follow-up and monitoring. You will need a doctor who communicates well and regards any lump in your breast as serious. Right now, with the cyst being so close to where your tumor was, it could hide a local regrowth (recurrence) of the BC. I think I would want to get the cyst removed for that reason. However, if you don't want the cyst removed, a biopsy is a good idea and don't see the problem in you requesting that. It is a shame that there is not another doctor any closer.
BTW, My family is the kind that OFTEN takes our car to mechanics and tells them exactly what the problem is.
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Barbe, No shortage of idiot doctors out there!
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Ndgrrl--your doc is
a jack a$$.Asking for a biopsy of a
current issue is not out of line.You
definitely need a new doc.It's your
choice what you want done to your body.You are not "fixated" on your breasts, there is a problem and
you are aware of it and trying to deal with it.Yes, there may be depression as well, that is very common in this
situation and can and should be addressed, but that does not negate your
concern and your choices.And what is so
wrong with choosing a mastectomy for reasons other than genetics?I did and there's nothing wrong with my
ability to think and make choices.Ask your jack a$$
doc if he can guarantee that by waiting and watching he will catch any
recurrence or new bc BEFORE it has a chance to spread anywhere.As in guarantee 100%.And if he had testicular cancer and an
abnormality in the other ball, would he just wait 'cuz a doc told him to?0 -
Native, read your answer and love it! Hate doctors that underestimate women's worries just because we are women. They are not gods and they are not the ones that have cancer in their bodies, at least not yet.
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Exactly Nativemainer! If most men (especially doctors) had any suspicions that one of their testicles had any issue at all, I think they would demand quick answers and treatment. It would become the focus of all of their thoughts (assuming their 'junk' isn't already the focus of all their thoughts- Ha). Hmmm, sounds familiar to a BC diagnosis... but some women ARE patronized (mostly by male doctors, I assume) and that is just wrong! Can you see a male doctor telling a guy with a cyst on his testicle not to worry, without investigating further?
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staynsane, agree! And remember that you don't have to seek the approval from your MO to get a biopsy done. My biopsy was done by my breast diagnostics doctor. My MRI and PETscan were ordered by my OS. In fact, the last doctor I saw was my MO, and that was after my BMX. I am lucky I have great doctors, but nevertheless, they don't have enough information about the different SE each woman has with exactly the same medication...and yes, it is Ok to question and to try to keep our precious bodies healthy.
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ndgirl - You've gotten some (well all) very valid responses. I would be chained to my computer researching a new MO. Mileage is mileage - I bet Native can address how much she drives. It's 45 minutes to just get into real city for me. Nothing would stop me from finding another MO. I know you're on Canada border which to me only means way the heck up there. Any chance of getting to Minneapolis? Let's say (and pray that it is) benign - your 6 hour drive and even a cheap motel will be well worth it and you will only need to see new MO occas. If not and again pray that it's benign it's worth every penny every mile to KNOW and get it out. I know of someone on here in Nebraska but can you find others in your area of ND? I'd try the search feature and just try different combos maybe start with big city names (I know a laugh I looked at ND on Mapsco).
And his lame comment about a bad week. Geesh - bad is considering cutting your breasts off. Does he even think b4 he speaks or does his English or foreignness get in the way? Not that foreign is bad - not at all and not saying that. Love my Chinese BS. I think it depends on where the majority of their education was as to how they relate. 'Course he would use that comment against you ammo for your "depression" which I agree you have every right to have. Get your game on if you decide go back to him. I have to rehearse/practice on things I know will be tough/challenging. I've written scripts for things - just lines/notes. But he may come at you so far from left field you can't prepare. Can you practice the "what the heck did you just say and did I hear it right" look? Between puzzled and ticked off.
Heck for grins I googled oncologist in ND and HealthGrades gave me 7 city choices and oddles of docs. Maybe female MO?
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Thank you everyone for being in my corner. Many of your comments made me laugh. Wish I could take you all with me when I have to go back.I do get to see a surgeon this month and I will ask him about the cyst and his recommendation. He is the one that did my lumpectomy. I am hoping I do not have to argue with him as well.
I also have an MRI( first one ever) ordered for Sept. I will probably have to go see him after it as he is the one who ordered it. I have a g/f who wants to go with me so she can tell him off.
I do believe I have depression as well and he told me "My friend, I wish there was something I could give you" all the while rubbing my legs. I gave him a look I know I did, it as a look of I don't have to stay here, but dang it this gown doesn't cover my top the way it should or I would run out the door, and I can go to a new doctor as I stared at the wall and tried not to cry.
Not sure why I had to cry to get this doctor to change his tune and give me my MRI and give me a referral to a surgeon but I finally got one .But it all comes with me feeling guilty, like he thought I was a nut case for asking about it.
I am on the lowest dose of Effexor there is for hot flashes. He told me that we had tried to double it an it didn't work for me - I got more hot and very hungry, that there was nothing else he could give me. UMMM HELLO is there not more meds out there and maybe suggesting a therapist to work though people telling me over and over to consider a mastectomy. Why wasn't this suggested last July when I was dx? grrrrrrr
I think a female MO might be a good thing. I know where I go now there isn't one. But ND largest city Fargo may have one. Its a 3 hour drive but what is 3 hours when I am already driving two to see this idiot.
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ndgrrl - look at HealthGrades. Just google ND oncologists. There are bunches and I know Fargo had some females cause I saw several. What's a couple of hours when it's your life/sanity at stake? I stupidly started out with an MO I don't particularly like only because the one a friend recommended was farther away. At the time I was working and time and his placement on major freeway was priority. Now that turned out to be not so big a deal since I see him so infreq. and not working and now the recommended one is in the same place he is. At present I have no compelling reason - like crappy tx - to change. Last summer I was more unhappy with him. He's not the warm/fuzzy. Mine's Indian but very much US post grad. trained.
Glad you're getting to see your surg and getting that MRI. Surg. can order a biopsy just as well as MO. Heck my gyn. is the one that ordered mine the same day I had my susp. mammo.
Someone said they were beginning to dislike the new EMRs (elec. med. records) because their doc spent more time typing than listening to their needs. My take too and yet I understand the need for it and appreciate my gyn/PCP/BS/ortho all in same group/records. But the EMRs are here to stay and will only expand. I see the day and I think it is part of the ACA that they will all have to communicate with each other.
Just read that my MO was a top doc in Ft Worth mag. for the past 4 years. Who knew. I don't think that was on his bio the last time I read it. I can't find this year's criteria but 2012 says vote by physician peers. Not sure if that means he's a "good" guy or respected. I know he's on several boards (prof) which is one thing that persuaded me in his favor. That and I "kinda" knew him. Also kinda knew sev. others that wouldn't get within a mile of my body (thank goodness the one I dislike the most is not a part of his group).
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E, I got my eyebrows touched up on Thursday. As unbelieveable as it seems, July 3rd will have been 2 yrs since I got them tattooed on. I am currently on a staycation so I got them touched up on my last day of work until the 19th. Your new header reminded me of me. The touch-up is the original color, per her notes, but dang, they seem dark! I had her do it a bit different this time; individual hairs as well as the brow line itself. When it's not so puffy I'll take a picture.
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More questions without answers. My radiologist and surgeon do not agree
on how to proceed. My RO is not convinced, that the last MRI shows
nothing of concern on the second spot. He also is not convinced surgeon
got enough of the first tumor, that was positive for malignancy. I am so
overwhelmed, I don't know where to begin. This has been going on for
over 6 weeks now and, as you all well know the waiting is the worst
part. I think I will seek an opinion from a second surgeon, on whether
or not to remove implant and take the entire capsule and as much tissues
as they can, to be sure nothing was left behind. I am having a pet scan
sometime this week, as well. I would appreciate your prayers and you
are all in mine. Stephanie0 -
Ndgrrl--I went
through a bunch of MO's before finding a decent one, and she was 90 miles
away.Believe me, the 3 hour drive is
worth it to see a doc that will listen to you and treat you like a human being.There is more that can be done for hot
flashes.I took gabapentin (Neurontin)
and it worked great.There are other
antidepressants in the same category as Effexor that you can try.Please do take the gf with you next time,
please.He needs to be told off, but
good.Luvmygoats-- as a
nurse I have to laugh at the docs complaining about ERMs.Nurses have been complaining about them for
years now, but it gets no notice until the docs finally are forced into using
them.The biggest problem is the
software tech used in EMRs is so primitive that it actually increases
considerably the time spent on documentation.I used to be able to write "Patient reports having no pain."
and that would be considered complete documentation.With EMR, I have to document "Is pt
having pain:NO, Worst pain gets:00/10, best pain gets:00/10,Pain level acceptable to patient:Yes, Patient's goal for pain:00/10, How many pain sites:0, Is
patient uncomfortable due to pain:NO"And that is a SHORT EMR
entry for a negative finding!Eph--can't wait to
see that pic, I've been thinking about getting brows tattooed, afraid they
won't look natural.Steph--praying for
you!0 -
ndgrl, he should NOT have his hands anywhere NEAR your leg, never mind rubbing it!!! Especially if it is a BARE leg!! Tell him you are here for your breasts and not your leg. In fact, that is so bloody condescending that I'd be prone to report him to his office at least, if not the AMA!!!
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Native - I'm a retired (well OK I still have a license but hope to not use it again) RN. I know you work in hospice which is why I made the crack about driving. That's what I did too and loved, loved it except for the driving, on call, admits at 5 pm on Friday. Put 25,000 miles/year on my car for work, negligible miles for pleasure. Now part of that is my fault in that I live 45 minutes away from Ft. Worth but they could never devise a pt roster that was equitable. And I agree with you about documentation.
Barbe - thanks for mentioning the hand on the leg. I saw that and intended to point out the inappropriateness of it.
3rdtime - a second surgical opinion sounds like an excellent idea. That would be the 1st place to start IMHO.
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