Can we have a forum for "older" people with bc?

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  • MomMom
    MomMom Posts: 334
    edited November 2014

    Welcome Shuf and hoping for good test results for you soon (you too Catherine!). Triple negs do not get that Fish test, so I'm not that familiar with the numbers. I think everyone is given a Ki 67 score at the first pathology but not as much weight is given to the results. Mine was 18 after the biopsy but 28 after the surgery. Didn't matter much as most all TNs need chemo.

    Shef, Puffin gives great advice - you will find just what you need on these threads.

    Teka, Congrats to you in reaching that TN milestone in March! Wonderful.

    You women are the best. Jackie, you ARE a blessing.

    Paula

    MomMom to my 7 grandchildren

  • Chevyboy
    Chevyboy Posts: 10,258
    edited November 2014

    Morning gals!

    Okay, now y'all got me thinkin'... I don't think I remember anything about "fish" anything! I just know they said ER & PR positive, so therefore I was supposed to take Tamoxifen, and as far as the Onco type test score, for chemo, I was a 19, but didn't "have" to do chemo.... Unless I begged for it, which I sure didn't want to.

    I also think my age had a lot to do with it... I was 72 when diagnosed, which is way tooooo old to get anything, besides maybe a cold... But this was all 5 years ago, so I must have done something right, anyway.

    And I went back, and see I had the same DX as you Shuf! Have you had your surgery yet? Mine was Dec. 4th, almost 5 years ago, and I'm still "kickin!" Ha!

    Don't be afraid... just write down all of your questions, and then write the answers down... Keep them all in a binder, so you will almost remember what is going on. It really IS overwhelming when you are first diagnosed.

    After your final Pathological report, you will know everything.

    Ask your "team" any questions you have, and then come ask us, because we are probably smarter................. Ha! JUST kidding. But we've BEEN there, so we can either help you not be afraid, or make you laugh... Maybe even both!

    Shuf, I went back and saw "they" are considering Rads, for you, and either the long type or the type I had... I had the Mammosite Device, one week, twice a day.... And it was what I had heard about and wanted!

    http://www.mammosite.com/breast-lumpectomy/view-a-demonstration.cfm

    With me, they inserted the device during surgery, but then replaced it with a "prototype" after, during my first visit after... I think they have different types now....!

    Just work with your team, and ask lots of questions... but we can help you in the way that we have all BEEN there...

    The gals on this thread are really helpful! Not me so much, because I'm too busy losing things, breaking hips, and running to Walmart...

    So let us know when you are having surgery.... ! We'll ALL go with you...

  • Chevyboy
    Chevyboy Posts: 10,258
    edited November 2014

    image

  • nancydrew8
    nancydrew8 Posts: 46
    edited November 2014

    Shuf, I'm also worried about chemo - no, more like terrified. Come to think of it, there isn't any aspect of this disease right now that doesn't terrify me.

    So, of course, I'm hyper-vigilant with how I swallow, how I urinate, why am I coughing, on and on.

    Cancer is a stalker

  • nancydrew8
    nancydrew8 Posts: 46
    edited November 2014

    Chevy, you are the best. During the consult last Wednesday, I asked about that mammosite device and was told I couldn't go that route. This cancer has come back in the same breast that was already radiated 23 years ago.

    During consult DH asked if it meant it was more serious having it come back in the same breast and BS indicated - no, since after 23 years it is considered a primary.  The upside is no node surgery since all that was done 23 years ago. Had it come back in the other breast, it would have been a different story.

    One thing during the consult that was somewhat of a relief was the fact that, while my arms certainly would feel the surgery, it wouldn't be nearly as sore as when the nodes were removed. I remember that was a humbling experience, and to this day, if I do too much lifting, (my 18-year-old Dachshund, Stewart Smile)  gardening or vacuuming, I do feel the aching later on.

    Why I think this time around it's causing all this anxiety is all this additional testing they do which, of course, I think is wonderful. Why get chemo if you don't have to.  Back 23 years ago, the only testing they did was if the margins were clean, the size, staging and hormone receptors and some survival stats they threw at you.  They did start me off on Tamoxifin which hurled me into an overnight menopaus with horrendous headaches and muscle pain (diagnosed as Fibromyalgia) and I stopped after two months. Couldn't handle it. I would get off and aches would slowly start improving, I'd get on and they'd start up again. So, no more and no more periods - age, 47.

    This time around with the HER2 and oncotype and this and the other, waiting for outcomes for each phase is like a death sentence. Am I guilty or acquitted! I'm lousy at handling it. I admit and two of my close girlfriends, I sense, are fed up with me. It's a comfort to know I have this forum to come to.

    I thought the other day, for all I know 23 years ago, my HER2 could have been positive, my onco's high, on and on and yet it took me through 23 years of comparatively good health. There's no rhyme or reason to breast cancer.

    By the way, I've not mentioned that I also have bladder cancer, DX in 2000; small tumors, have had three surgeries for recurrence, which is almost always the case with Bladder C., but it has never terrified me like breast. The tumors have been small, sitting right on top and not dissimilar to skin lesions. My female Urologist is a brilliant surgeon, young and up to date with very gentle hands. I'm lucky.

    I've also always thought that if breast cancer showed up again, it would be a primary and I would handle it. Heh! Given my age, if I lasted 23 years as is the first time,  I wouldn't even know my own name.

    Anyway, that's my story and I'm sticking to it. I feel better now.

    Thank you for listening to my ramblings.

    Catherine

  • carolehalston
    carolehalston Posts: 9,024
    edited November 2014

    Welcome back, Rita!  I've been missing my golfing friend!  Somehow I missed your return post.  After Sandra welcomed you, I went back and found your post.  That happens every now and then.  I open up this forum and a post I haven't read is skipped over.  It's a good idea for you just to join in without all that reading of pages and pages of back conversation. 

    I'm off to the gym this morning in this cold weather.  Yep, I'll be wearing shorts so I'll walk into the Y with blue legs!  This afternoon I'm planning to make pasta using an extruder attachment for Kitchen Aid that I bought and have never used. 

    Sandra, I love your story about waking up in a freezing house and booking a cruise!

    Happy Saturday!

  • illinoislady
    illinoislady Posts: 46,506
    edited November 2014

    There are as many nights as days, and the one is just
    as long as the other in the year's course.  Even a happy
    life cannot be without a measure of darkness,
    and the word "happy" would lose its meaning if it
    were not balanced by sadness.  It is far better to take
    things as they come along with patience and equanimity.
     
    Carl Jung

  • puffin2014
    puffin2014 Posts: 979
    edited November 2014

    correct, I never had any FISH test.

  • illinoislady
    illinoislady Posts: 46,506
    edited November 2014

    Morning everyone -- hope you are staying warm and comfy as possible Blondie.  Wondering where Joan is now?  I guess working.  I am going to have to try and remember what everyone said as the PREVIEW still wasn't working for me last time.  Probably still doesn't.

    Ah, first thing I think might be that cruise. Puts me in mind of the excruciating desire for ice cream, cheese cake, and Mars candy bars about 10 minutes into your newest/latest eating program.  I have pretty much refused to use the word DIET, sssh, for a long time as I think the connotation gets to me.  Anyway -- lose the heat in your house and the only way the time is going to pass without totally constant notice from you is to dream of only the warm places and then figure out JUST which one your going to go too, as soon as possible.  Got a big kick out of that.

    Shuf, Nancy Catherine -- we wouldn't be human if we didn't have fears and plenty of them.  How many times  a day I have to stop and think  WAIT, I am far bigger than that and now I'm just going to have to prove it.  That said, I didn't have quite that attitude when I was diagnosed -- it was a work in progress through my whole treatment -- but I do feel that a more positive attitude -- a, take it on and kick it's you know what, with all you've got, does help you.  These things are not a cure -- they are just something that hopefully helps you keep out of the highly negative area of thoughts.  Unfortunately our minds -- left on their own -- don't make great assessments.  They will make a mountain out of a mole-hill every time just about, if we let them. Our mind can be run-away trains -- totally unaware of any direction and we ( because we don't have completed information most of the time ) are left to deal with doom, gloom and terrific upset.  Not a very good recipe.

    The best thing -- not too darn easy at all -- is to try and keep focusing on the amount of times your worst fears were NEVER realized.  In general for most people -- our worst fears, our most suffocating times of dread, come and go, and are not nearly as much of a boogie-man as we have made them out to be.  Needless worry and  upset just giving us twice or three times the stress we need.  Practice makes perfect -- don't worry about the things you don't know, and that means though difficult, every time you start to worry you just have to say to yourself --- stop that.  I don't have the answers yet so can't assess and assign any meaning and especially any outcome. 

    I have a friend ( a fair amt. older than me ) who has had a cancer diagnosis three times.  She is always careful with going and having her tests ( general and otherwise ) on time, but she has a very blasé attitude.  First she had a breast cancer and the standard treatment then was just removal of the breast -- then 10 yrs. later she had some ? bladder cancer, and then ten yrs. later the other breast -- which was within the last couple of years.  She just had it taken off.  Feels much better and hopefully will have a lot less issues with the lop-sidedness that plagued her for a long time.  She told me that her attitude is -- hey, I only have trouble every ten years -- so it is no big deal.  That is her true attitude. 

    Anyway, been busy this morning with a little variety of things that will expand a little thru the day and will go to work and be there by 4:15 this afternoon.  Sometimes my work night is on a Friday, so I usually never know for sure.  I don't mind.  At my age I'm not doing very much either night.  I'm just grateful I have a job to go to. 

    I hope you are all going to have a fine, fine Saturday.  Stay warm and try not to worry about any information you don't have yet. 

    Blessings

    Jackie

  • illinoislady
    illinoislady Posts: 46,506
    edited November 2014

    Foodsafety.gov: Your gateway to Federal food safety information: Banner image for recalls and alerts

    I'm hoping when I hit submit the above link stays.  I did this differently than my usual.  Anyway, just in case -- the link is :  FoodSafety.g0v which sends out alerts about food that is recalled or might have some issue connected with it that maybe people with compromised immune systems should know.   Likely I would not have done much but it seems like every other day something turns up here -- so with knowing we have extra people coming on the Older Forum, I just decided if any of you didn't have a resource for this information, maybe it was time to share mine.

    Jackie

  • shuf
    shuf Posts: 79
    edited November 2014

    thanks guys - decided to spend the weekend with one of my grandchildren so I can get this off my mind - I can at least make a good memory so this stuff is not ruling! Hope to know Monday some more informationSmile

  • revup-65
    revup-65 Posts: 13
    edited November 2014

    Catherine-I am so glad I found what you posted, we are almost identical in our journey with breast cancer I think we are the same age, mine came back after 20 yrs. 1.5 cmm DCIS. Went through the same treatment, didn't do Tamoxifin either. Just got the diagnoses Thursday, 1.2 cm, IDC, have doc apt Monday to make a plan. I wondered about rad again now I know that won't happen. I also wondered if it would be considered more serious but now I know it is considered a primary.   Yep they have a lot more tests now, it is stressful, lots more waiting. Thank you for sharing your story, it defintly helped me.

    Revelle

  • nancydrew8
    nancydrew8 Posts: 46
    edited November 2014

    Revup, have you gotten your HER2 results yet?  I was expecting the results yesterday but now they're saying sometime later in the week.  I'm a bit more relaxed today, but I was scared and miserable all day yesterday until I got the call about the delay.

    I have decided on a double mastectomy, but in terms of beyond that, I can't say until more information is available on the tests. I'm not interested in reconstruction nor do I want to be bothered with having to wear a prosthetic in the cancerous breast. Most important, I don't want to stress out every year facing a mammography.

    I know you're waiting to meet with your doctor, but have you mulled it over as to what you prefer to do?

    Catherine

  • MoJim
    MoJim Posts: 8
    edited November 2014

    Hi Ladies: I'm pretty sure I posted on here earlier this week, but can't find my post now :(!  Anyway, I'm 63 & would like to be part of this "Older Women's" group.  I am very computer savvy & just as I say that, I will have a zillion typo's - Oh, Well!!!  I was just diagnosed last month w/ DCIS.  My Lumpectomy is scheduled for this Wed. Nov. 19. The only info I have so far as to my diagnosis is what they found on the stereotactic needle biopsy.  I guess I will learn much more after my surgery when the pathology comes back. I have a lot of clusters of micro-calcifications measuring up to 4mm in diameter & 3.0 cm in length each.  Along w/the DCIS, I have comedo necrosis which a Pathologist friend on another cancer website told me was "not good" to have -- Yikes!  My husband has 4 different cancers, so I'm not a "newbie" at this, but I've always been in the Caregiver role before.  The Surgeon has told me I will require Radiation, but has not mentioned Chemo, which is "good" because I would refuse it.  I have a rare disease that would complicate use of Chemo or any estrogen/progesterone therapy, so my options are going to be very limited.  I am not "afraid" ... I am just angry & sad that "we" (as a couple) have a 5th cancer to deal with.

    I look forward to many more "chats" with all of you in the future!  Please think positive thoughts for me on Wed.

    Maureen

  • nancydrew8
    nancydrew8 Posts: 46
    edited November 2014


    Hang in there, Maureen, you're not alone in your fears and worries. Yours is a heavy load. As you said, you've always been the caregiver and now you're the one who has to deal with this awful disease.

    This forum has been a Godsend; a safe space. In this short time, it has helped me beyond words can describe.

    Hang in there, us newcomers are in choppy waters right now, but after reading everyone's journey, I know you and I and all the other newcomers will see some order and predictability back into our lives.

    Catherine

  • puffin2014
    puffin2014 Posts: 979
    edited November 2014

    yes, MoJim, I remember you posting earlier. Glad you found your way back, unless I marked a forum as a favorite it got lost forever. Sending good thoughts and prayers for you for your surgery this week.

  • magicalbean
    magicalbean Posts: 193
    edited November 2014

    Good evening from chilly northern Appalachia,

    I am 66, and was dx'd with DCIS in August. All I could think of was "Well, crap. I made it this far unscathed and now this." It's nice to find a group of people my age.

    I'm almost half way through RADS. In January I have to decide if I want to start Tomoxafin. My MO will rx it if I want, but she does not think I need it. I wonder if this is like going into battle with a dull sword. She said I need to read up on the med, research the pros and cons, and bring my questions to our Jan. appt, Cancer and now HOMEWORK. Sheeesh!

  • revup-65
    revup-65 Posts: 13
    edited November 2014

    Catherine-we must be kindred sprits here. I am doing exactly what you plan to do. After rads your skin doesn't heal the same so why put your body through any more than you have too, and why keep the other breast just to keep worrying. I have not got my HER2 yet, hopefully when I go in on Monday. I am sure I  will get chemo either way, but after being a part of this community I know how fast things can change. It is great here, it has helped me so much. I never expected to do this again after so long but I bet you didn't either. Being here seems to help with the OMG!!!! and gives me courage to face another round on the dance floor with bc. Its like having a family that know what your going through and is always there to support you.Will be following how your doing, you are welcome to message me. I will send positive thoughts your way.

    Revelle

  • ritajean
    ritajean Posts: 4,042
    edited November 2014

    shuf...Enjoy your grandchild this weekend. They are indeed true blessings! I have three little grandsons and I'm going to be one happy Grandma this Thanksgiving because they live in Tennessee but will be coming back to Illinois for the holiday. They can boost my spirits in minutes!

    Carole..speaking of grandchildren, my ten year old grandson outdrove me on the 8th hole this summer. I am thrilled that he is excited about golf! I'm afraid that my golf is done now until we head to Florida. Also...do you ever get the urge to write any more books or are you officially retired?

    Oh my gosh, Maureen. It sounds like you are no stranger to cancer. I am so sorry that you have to go through this! I will certainly be sending positive vibes your way on Wednesday!

    I have been having so many digestive problems that I finally broke down and tried gluten-free. I can't believe how much better I feel. I've been on it for 6 weeks now and I even have more energy. My problem is menu planning and I'm finding that I have to cook so much more because there aren't very many processed foods I can eat. I'm also having trouble finding a decent bread for sandwiches. I've been busy searching through gluten-free cookbooks for new and different ideas. It keeps me out of trouble!

    Hello to all my friends from the past on this thread and welcome to those of you who have joined the thread during my absence. I look forward to getting to know you all better.

    I'm off to grab my book and curl up and read. It's snowing here lightly and it's a good night to just settle in!



  • illinoislady
    illinoislady Posts: 46,506
    edited November 2014

    I will have to scroll up and down -- what a limited memory -- about the time I start the second entry here I've forgotten what I just read.

    First of all rev-up -- so glad you found us and Nancy Catherine as well.  At the very top of this page, left hand corner and right below where it says to jump to bottom -- there should be a line that says " Add to Favorites ".  If you tap that with your mouse -- the forum will be added in your personal BC. Org favorites list and every time there is a new post, when you come to BC. Org, you will see the numbers and be able to go directly into THAT thread.  I also put BC. Org -- discussion group in my left side long, long list of favorites so I don't have to type in Breast Cancer. Org -- I just tap my mouse in my favorites list from the whole Internet and from that directly into the BC. Org favorites list and bypass having to fool around with things too much -- it is quick and simple.  Have done it that way almost from the first which is a long time now. 

    The above info should help you too MoJim.  You did post before.  It can be tricky ( Bc. Org is a big place with lots of forums and lots of threads in the forums -- easy to get lost.  You can make anything you want too a favorite.  Later, if you don't feel one of the forums is a good fit, you just come on the page and hit " Remove from my favorite Topics " and you can drop those which you don't care to keep up with.   I hope I've explained it all right.  I'm not really computer literate though I have taught myself what I know how to do here.  Total and complete life-saving sanity and necessity at first. 

    MagicalBean -- welcome to you.  We are also glad you found us here.  Yes, at our age -- we all had to do homework.  As for me -- I was so terrified ( started the whole thing out with no insurance knowing something was likely really wrong -- but not thinking the wrong was cancer ) that I relied on my Avon Breast Navigator for most of my info and guidance.  We had almost  identical cases, even though hers was 7 yrs. earlier, and she knew exactly where I should look and what I should read.    Anyway, we are good at hand-holding, listening to rants, helping people over their mountains, out of the fog and out of the depressions too.  We share almost anything here.  We may cry together sometime, but we also laugh and we even talk about "the diagnosis" sometimes.  So welcome to your little part of BC. Org.  We are very glad you are here.

    Rita, good to see you again, my friend.  Just got home from work -- drove home with snow falling.  It won't be much, but have to admit -- seeing it with the head lights of the car was sort of neat.  I've noticed a lot of packages/boxes of food in the store the last year or so which are gluten free.  I think for many people ( and you have sure found it out ) it can make a real difference in how you feel.  I don't know for sure, but I think one place you might try for good recipes for a gluten-free diet is Spark People. com.  I use that sight as they are all for nutritious foods and also good for those who need to watch calories. 

    I would have to look but I think you may want to look at that bread called Ezekiel bread.  Because it spoils fast if not refrigerated it is sold here in our stores in the frozen section -- other stores may not do that, but this being a really small town, in order to carry enough -- they need to freeze it.  Anyway -- it is a really, really good bread.  Dh and I would buy more but it is costlier and we are huge bread eaters.  If I had a diet problem like yours -- I would buy it all the time, but I can eat good wheat bread.  Both the nutritionists I know also tell me to buy Almond Butter ( fairly expensive too ) you need to get the kind that basically has nothing in it but the Almonds and a bit of salt I think it is......they say it is much healthier than any of the peanut butters that are sold.  It tastes pretty good too.  You can if you have a Nutri-Bullet or something along that line buy almonds and grind them yourself and make your own which would be a bit cheaper.  Also, good cold-pressed olive oil -- only cold pressed.  That usually is the extra-virgin olive oil. 

    Anyway cooking class over. 

    I hope you all have a good Saturday night. Dh is popping corn for us both so I'm late getting into the living room.  See you all in the morning.  Stay warm.

    Jackie 

  • blondiex46
    blondiex46 Posts: 2,726
    edited November 2014

    welcome to the nubies we love newbies, lol.....

    when I was diagnosed in 1996 no onco type or fish thing, got lumpectomy and radiation and chemo.....

    14 years later, can't get radiation, chemo well off of that and no surrgery cause it is on the chest wall and can't do anything. spoke to the dr yesterday about the enlarged lymphnode under my arm where they took 14 LN and 1 had cancer in it, so I was stage 1 then...now metastaic.  Now I am just getting the feeling bback under my arm.  Anyway I am getting a PET scan to see what the deal is with the under my arm thing and maybe radiation, IF i didn't get radiation the first time.

    HEY EVERYBODY.....IT IS COLD HERE IN PHILLY....

    Happy Saturday night

  • nancydrew8
    nancydrew8 Posts: 46
    edited November 2014

    Blondie, you are a brave soul and your posts ground me. Let us know what the outcome of the PET scan is.

    Cold here in NH, as well. I just want the weather to cooperate until our son lands on Dec. 20. He is flying home from London where he lives and works.

    Have my surgery on Dec. 12 and hopefully the drains out before he gets here. He's not accustomed to seeing me sick. I'll do most of the shopping and cleaning before I go in. It'll be strange to see DH and son in the kitchen.  Hah!

    Catherine

     


     

  • anneb1149
    anneb1149 Posts: 821
    edited November 2014

    Hi all

    Welcome Shuf- I don't know how helpful I can be, but I was diagnosed a year ago Sept with HER2+ times 3. The Dr drew a picture of a cell and put 4 rectangles around the circle and said that's HER2. Then she added 8 more rectangles and said that's Her2 times 3. Other than that, I don't know anything about fish #'s or onco scores. I had 4 sessions of chemo, 3 weeks apart. I had both Herceptin and Perjeta as well as Taxotere. There was one other drug that I cannot think of the name of. By the time I had surgery, a dbl mastectomy in late Jan, the cancer was gone. I then underwent 33 rounds of radiation. I am getting the idea that my situation was far more complicated that I knew, because it took the radiology oncologist over 4 weeks to figure out the radiation plan. My breast surgeon has refused to talk about reconstruction yet. Saying all that, my point is very much that I am still here. I still have some discomfort ( I have to wear a bra 24/7 because do swelling under my arms) but am doing well. Whatever your final diagnosis is, there is a plan that your team will figure out that works for you.

  • illinoislady
    illinoislady Posts: 46,506
    edited November 2014

    Courage doesn't always roar.
    Sometimes courage is the quiet voice
    at the end of the day, saying,
    "I will try again tomorrow."
    - Mary Anne Radmacher

  • illinoislady
    illinoislady Posts: 46,506
    edited November 2014

    Good Morning everyone,

    Well, the snow dusting ( a lot of it ) is melting.  Later on today we could get as much as three inches so it will be cold and stay that way for a bit.  I'm sort of used to the idea though I can't say I'm exuberant in any way.  It could be a long winter I think!!!

    Anne, you said something that struck me -- about some of the cancer journey's issue's and events being more complicated than you realized.  I thought in a  really immediate flash, of all I didn't know in the beginning and still don't for that matter.  Then decided that for a huge amt. of us if we were completely aware -- it might be much harder.  You know, sort of like the drug companies advertisements on t.v.  We never experienced ( yrs. ago ) all of the info we hear now about these drugs.  My reactions usually fall in the range -- boy you better need that stuff really, really bad to take the risk of the side effects it has.

    So, I think too, in a lot of cases --- if we had total awareness of all the things, side effects, and total scope of the journey we end up going through -- it might in many ways be more difficult, and we might be looking for shadows everywhere.  Still, the bottom line is -- I wouldn't have changed a thing about how I went through with all that transpired for me.

    I feel like my needs were met and dealt with as circumstances came and went -- and that over-all, I can look back and feel good about the many caring, loving and highly qualified people who cared for me.  They were the ones with the knowledge, not me, and I'm sure that kept me going and fighting without the major distraction of having to "know" some things that might have made it harder over-all.  Just like those drug ads on television.  I did not have to DEAL with all the things that did not happen -- or even be aware of them.  I'm sure there are some people who would do just fine anyway -- but for me, I think it was better to let someone else worry about part of it -- or at least know what to watch more than I did. 

    Hope you are all looking for a good Sunday.  You are all in my thought and hoping your weather is tolerable.

    Blessings

    Jackie

  • nancydrew8
    nancydrew8 Posts: 46
    edited November 2014


    Jackie, you touched on something that I've given a lot of thought to throughout the years. You know 23 years ago when I was diagnosed, I soon realized that I could have taken that tumor to 2 different doctors and each would have a different opinion about it.  This terrified me as I dug deeper into the disease.  The more I read and learned about it, the more terrified I became.

    I used to cross paths with women with the disease, more recent than not, and they didn't have a clue about any of their types - none. They were happy, hopeful, minimized the event, didn't think it was a death sentence, on and on.

    I thought, this might be one area in life where "knowledge is not power", and if it is power, you sure need to know how to handle the discoveries you make along the way.

    If I have to take Herceptin, I already know some of the serious side effects and this is even before I even know I'll be getting it. Just how crazy is that?

    Maybe it has to do with our personal characters whether we need to learn more or just let it be.

    However, in today's world, you need to watch your back and make sure that everybody in charge, including ourselves, is doing right by us.  I will make another post as to what happened to me on the day of the biopsy this past Monday.  It sort of ties into this discussion.

    Catherine

  • Nash54
    Nash54 Posts: 699
    edited November 2014

    Well said IllinoisLady...I'm leaving it up to my very capable doctor to figure all this out. Too much info for me can be overwhelming. Luckily I have a wonderful doctor whom I trust with my life...literally.

  • nancydrew8
    nancydrew8 Posts: 46
    edited November 2014

    This past Monday I went in for my biopsy scheduled for 10 a.m. The nurse gave me the jacket to wear and said I was to have two biopsies. No, I said, there must be some mistake because I'm here for only one; I said there never was any mention of having two procedures done. She then said I would have to speak with the doctor.

    I was escorted into the room where the procedure was to take place. This news made my knees weak and I could feel myself coming undone.  It's a good job my Breast Navigator had instructed me to take 1/2 of a low dose Ativan, just to take the edge of as I was pretty scared of the procedure even though I knew what it entailed, let alone this bizarre turn of events.

    A couple of minutes later this tiny, comparatively young woman walked in and introduced herself as doctor so and so and went right into why she was going to do two biopsies. She took a piece of paper and with a pencil drew what my scar showed up as on the ultra sound where they top of the scar has this fuzzy area. Then she moved over to the tumor, letting me know that it was only 2cc away from the scar and it had the same fuzzy area similar to the 23 year-old scar. So, now I'm thinking it's a spread, not a primary as my doctor indicated right off the bat who did the surgery 23 years ago.

    I said no. Can't remember what she came back with, but I clearly remember saying an emphatic "no"! Do only one biopsy as that's what I'm in here for.

    Now this is the interesting part.  "Okay", she says and backs off. No further explanation...nothing. Just simply backs off.

    To her credit, she did an amazing job; didn't feel the needle, nor the second one and certainly not the actual specimen gathering. Back in the dressing room I told the nurse how disturbed I was with what just happened, and she said she'd let the doctor know.

    Fast forward to Wednesday. We're in for a consult with DH, my Breast Navigator and my surgeon. After everything else was discussed and he, once more, confirming that it was a primary, I told him about the incident. How I was told I needed two biopsies. He smiled and exchanged glanced with my Breast Navigator and the only thing he said was...."she's tiny, isn't she?"

    So, while being somewhat unknowledgeable can have its advantages, being your own advocate is very important, as well

    I would welcome any feedback from some of you.  Was she being super cautious or does she get paid per biopsy? I don't know what to make of it. I think if she was being super cautious my surgeon would have said just that, instead of "she's tiny, isn't she"!

    Catherine


     

  • nancydrew8
    nancydrew8 Posts: 46
    edited November 2014

    Nash, good for you. After reading some of the accounts of what women go through getting a hold of their doctors, getting the right information, etc., it is truly a blessing to have a good doctor whom you like and trust.

    I'm in the same boat as you. I took surgeon's advice 23 years ago even though he's an oncology surgeon and not an oncologist and I asked him to do the same this time around.

    Catherine

  • Nash54
    Nash54 Posts: 699
    edited November 2014

    nancydrew8....my doc is an oncology surgeon too. He is also the director of the Breast Center I go to. He is on top of all the latest research and he explains all my options and gives me his recommendation and leaves the final choice up to me. I feel I am good, capable hands.

    I am so encouraged that you had 23 years with no cancer....and sorry you've had a new primary, but sounds like you've got a good doc and can look forward to a great outcome.

    I'm about to turn 60 next month and would LOVE to get 23 years cancer-free!!!!

    p.s. I loved reading Nancy Drew as a child Smile