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Stage 1, grade 1 and pre-menopausal

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  • jwilco
    jwilco Member Posts: 209
    edited February 2012

    I hope this question isn't too off topic, but since we all have very similar stats I thought I would get some opinions.  Onco 12 so no chemo.  UMX/recon, no radiation.  I've been on Tamoxifen three months, no bad SE.   I have my first follow up appt with the MO in February.  What should I expect from this appt?  Usually I feel I need to be pro-active with medical issues so I want to make sure he's doing his job.  Does the MO order blood work or any other test or do I also need to schedule an appt with my primary doctor?  (I actually haven't seen him in over a year.)    Thanks!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited February 2012

    First off, did you visit your gyno before beginning the Tamoxifen for a baseline transvaginal ultrasound? If not, make a gyno appointment. The oncologist will take your blood pressure and blood. Have him/her send the results to both the gyno and your PCP. I see my PCP every six months. We go over my health. He wants to make sure that I don't die from something else.... For a long, long time. The oncologist will ask how you are feeling and if you have side effects. Mine asks if I have leg cramps because clots are a serious side effect of Tamoxifen. Pokes around my neck, breasts, groin and legs.The only question that I have is if there is any literature regarding clinical trials that I should know about. Usually, my appointment and exam are completed within minutes. I am happy to spend little time in his office.

  • jwilco
    jwilco Member Posts: 209
    edited February 2012

    Thanks for the info.  I did see my gyno before starting tamox since I had to have my Mirena IUD removed and had my pap test.  I didn't think about the ultrasound, however, I did have one a couple years ago due to ovary cysts (one removed).  I will see if I can get another appt with her to talk about monitoring me closer due to the tamox.  I guess I'll also make an appt with the PCP too.   Does the MO ever do blood work? 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited February 2012

    Yes. And blood pressure

  • chrissilini
    chrissilini Member Posts: 13
    edited February 2012

    My dx similar to alot here. Area of IDC was 0.7cm, no node involvement.ER+ 34%, PR+ 97%.  Had bmx with te's. Met with my MO and she didn't recommend any further treatment, not even HT. I don't believe and onco test was even done given the size of the tumor. I was a little suprised she didn't rec HT as it seems most ER+ get it. I mentioned having my ovaries removed and she didn't think it was a good idea. I'm a little paranoid that I'm not doing enough to prevent distant recurrence.

  • Sherryc
    Sherryc Member Posts: 4,503
    edited February 2012

    Chrissilini I am low ER+ but my MO has me on HT.  When I question the effectiveness he said it is kinda like being pregnant you either are or your not.  He even said that they have found HT works on ER- & PR+ women as well.  They don't really understand why it works for them but it does. I think I would get a second opinion.

    jwilco I see my MO every three months and he orders all my bloodwork.  I see my Gyno once a year for pap and I see my PCP once a year unless something comes up.  I usually get my Gyno to order my cholesterol and anything else I may think of in between onco visits.  I make sure all three Dr's get copies of everything.

  • Annicemd
    Annicemd Member Posts: 292
    edited February 2012

    Chrissilini, I am really surprised you have not been offered HT. As far a I am aware all women who are ER positive should be offered this even if weakly positive. Also the ocncotype DX is useful even with small tumours in pre menopausal women. I am presuming you are pre menopausal as you talked about having ovaries out. Your stats are fantastic and you have already done a lot to prevent it coming back but i don't think you can be too proactive with this disease. I think you should go quiz your onc about this

  • chrissilini
    chrissilini Member Posts: 13
    edited February 2012

    Thanks for the input. I think I need to make an appt and discuss it with my MO. I need some more explanation I think. And maybe even a second opinion.

  • Annicemd
    Annicemd Member Posts: 292
    edited February 2012

    BTW Chrissilini, the MOs tend to use a tool called adjuvant online which is a program that they put all your stats into and give you an individualized recurrence risk at ten years and they can tell you the difference in outcome between no HT vs tamoxifen or AI vs tamoxifen or AI plus chemo. So ask your mo about adjuvant online too!

  • Mallory107
    Mallory107 Member Posts: 14
    edited February 2012

    Chrissalini

    Since you only had a microinvasion and had your breasts completely removed it is understandable that your MO did not offer Tamoxifan.  Your level of 'prevention' with Tamox would most likely only be 1/2%  At least that was mine because the chance that my microinvasion would have spread was only 1% so if the tamox takes the chance down by half you get 1/2%.  In your case you would get all of the side effects of tamox for that 1/2% reassurance.  Your chances of certain cancers on Tamox are higher than that 1/2%.  Its a personal decision but for me its not worth it at all.  The risks far outweigh the benefits.  I am 'proactive' by completelly changing my lifestyle and terrain so that I am not a welcome host to cancer any longer.  To me that helps take care of that 1% risk of reoccurence. 

    Beesie does the best job of explaining this-maybe look up her posts on Tamox.

  • chrissilini
    chrissilini Member Posts: 13
    edited February 2012

    Mallory...Thank you so much for that explanation. It really helps me to understand. I'm thinking that is where my MO was with the decision. I'm not willing to deal with the potential side effects for only 1/2% and my MO felt the same. I am making lifestyle changes and will discuss this more with my docs. I want to make sure I'm doing everything I can while still enjoying life.

    I will come to terms with all of this at some point. For the most part I've been dealing with this whole cancer thing pretty well. I just have my moments when the reality of it all hits me. At times it's like I'm hearing the dx for the first time. It's only been a fwe months since this rollercoaster started. I'm hoping soon to get on a kiddie ride for a while.

  • Mallory107
    Mallory107 Member Posts: 14
    edited February 2012

    I know that feeling so well...that realization that "wait, I have cancer!" that hits you out of the blue.  Its getting better for me though but still happens sometimes. 

    DId you read the book Anti-Cancer, a new way of life ?  This book was lifechanging for me and I wish I would have found it years earlier.  Its the best book on describing how lifestyle can contribute to cancer and how to stop it. I highly suggest this book to help you chrissalini-unforunately I have found that MDs do not really want to discuss this kind of thing much so becoming knowledgeable yourself is the best way to go.  I am also mtg with a naturepath to make sure that I am implementing all my supplements correctly. Looking forward to that.

  • tunkylala
    tunkylala Member Posts: 18
    edited February 2012
    jwilco: My 3 month MO visits are pretty uneventful, thankfully. He has not done blood work the past two visits. However, when I had my appt with my survivorship NP she had a complete panel run to check levels of Vit D and other essentials. My MO just pokes arounf my nodes, breasts, and abdomen. That being said, I did do radiation. My RO does do bloodwork now every 6 months. I did not have chemo and ALL of my bloodcounts were great during treatment. They were so good that my RO did them every 2 weeks instead of weekly.
  • Kelleyod
    Kelleyod Member Posts: 125
    edited February 2012

    Hello sisters. . .

     I'm hoping you don't mind me jumping on this thread as I think y'all can teach me something . . . . .

    I am lucky enough to have just gotten my final path report phone call from my PROPHALACTIC MX today. . . to hear that they found a 6mm tumor of invasive breast cancer in the breast and a "dot" in the one lymph node they took. (Remember - this was a "healthy" breast - so they only took one lymph node - sentinel as a precaution). . .

    I am stage 1, low grade, premenopausal. . .  44 years old, in decent health with thyroid issues and recently diagnosed Cowden's syndrome during this BC journey (genetic mutation but not BRCA).

    My BC experience has been a 9/1/11 diagnosis of DCIS in the "other / non-healthy" breast that was 2cm and was taken on 10/10 . . .  my TRAM flap recon was simultaneous with the proph MX two weeks ago.  

    I feel like my rollercoaster just took another track!  :)

     I am missing some details which we are gathering - receptor details as an example.   BS talked about Onctype score - getting it . . . I'm sure we'll go that far.  I think she was referring to that adjuvant online website today - almost sure of it!  So I'll look for that score.

     I'm wondering if y'all have any insight for me on questions to ask, routes to try, probability of chemo (understanding it's all very personalized - just looking for experience). . . .  do you think since it was a micromet in the lymph node we call that positive?  or negative?  I'm looking for your awesome experience . . .feeling slightly numb and dumbfounded . . . .I had one foot out the door on this journey and I've been yanked right back in . .  :) 

     Appreciate any insight and openness for me to hang with ya a bit. . . .There is no support like the support of a survivor. . . .

    thanks. . .

    kelleyod

  • Annicemd
    Annicemd Member Posts: 292
    edited February 2012

    Kelleyod, I have been off line for a while, sorry not to have replied before. Your tiny 6 mm tumour and low grade puts you in a fantastic outcome group. I think you will be recommended tamoxifen but not sure about chemo, that will depend on oncotype dx and whether they think the dot on the lymph node was significant. You have done all you can with your mastectomy and hopefully that will be the last of your BC journey

    Hugs

    Annice

  • MarGie629
    MarGie629 Member Posts: 4
    edited March 2012

    Hello everyone. This is my first time to join any discussion at breastcancer.org. I find all the discussions to be very helpful and such a big support.



    I am 48 years old and was diagnosed with IDC, Stage 1, premenepousal, ER/PR + at 95% and with HER2 equivocal +2. Both my surgeon and MO are telling me that I must have radiation therapy. My MO further told me that I should have HT. I do have a choice whether to have chemo or not (although he encourages me to do so). I am still undecided but I did request for the Oncotype Dx last Thursday. I won't get the results until after ten days. I guess I will make my decision based on the result of my oncotype.



    I just want to know if there are some out there who have the same stat as mine and had opted for chemo. I am leaning towards having chemo but I don't want to go through it if it is not really vital and essential.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2012

    MarGie...I think you need to sit tight and wait for the results of the OncotypeDX test which should give you more information about the characteristics of your tumor and then from there you can decide.  Furthermore, you may request a second opinion from another medical oncologist and/or ask your case to be presented to a tumor board...which is a group of oncologists.

    In the meantime, you might google search the 2012 NCCN breast cancer treatment guidelines.  Look for the treatment guidelines that closely resembles your tumor.

    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

    You'll have to register to use the website, but there's a wealth of information.

    I'd also request that your tumor undergo further pathology to see if the HER2 status can be further understood. If it is confirmed that you are HER2 positive, then it is more than likely that you would be a candidate for chemo and Herceptin.

    Good luck!

  • MarGie629
    MarGie629 Member Posts: 4
    edited March 2012

    Thanks, voracioureader.

  • hawk
    hawk Member Posts: 255
    edited March 2012

    MarGie629 - Your Oncotype test results will also have HER2 status results on the last page of the report.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2012

    http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=102&abstractID=82476

    At the last ASCO meeting the following lecture was presented (link above)

    High false-negative rate of HER2 qRT-PCR of the Oncotype DX test: An independent quality assurance study. Print this page
  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2012

    http://jco.ascopubs.org/content/30/5/570.full

     http://jco.ascopubs.org/content/29/32/4219.full?ijkey=b928c1c768c44084b87310588999889d818881f0&keytype2=tf_ipsecsha

    Also worth reading!

  • MarGie629
    MarGie629 Member Posts: 4
    edited March 2012

    Thanks, Hawk. I am awaiting the results of the Oncotype Dx. My MO said that it should be available by 3/15.



    Voraciousreader, I signed up for membership at NCCN.org. It is indeed very informative but I still have to get my actual HER2 to be able to get the right path of treatment. Just as you you and Hawk said, the results of the Oncotype Dx will lead help me decide towards the next steps. Thanks for the tips.



  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited March 2012

    MarGie629   Do you know if you will have the FISH test performed?   I went through several Her2 tests to figure out whether my initially positive Her2 was accurate.  My MO and surgeon both said that it would be unlikely, although not impossible, to have a Her2+ status, with Grade 1.    I had FISH performed on two masses, and both turned out negative.   Because of negative Her2 results and low oncotype dx scores, chemo was not recommended to me.  

    voraciousreader   From the articles that you posted, the take away for me is that the oncotype dx does not necessarily give accurate information regarding the status of Her2, is that it?   I used to breeze through these articles, but I have a new Tammi prescription and my mind is scattered these days. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2012

    Joy...You are correct!!  The takeaway message is that if there is a questioin about HER2...then the OncotypeDX test can be unreliable.  That's why I mentioned initially that while MarGie waits for the results of the OncotypeDX test, she should also ask for further testing, like you did, on her tumor.

    Good luck with the Tamoxifen....I would also recommend a baseline transvaginal ultrasound if you haven't had one already. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2012

    MarGie...Please share the articles with your doctors.

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited March 2012

    voraciousreader   I had a tv ultrasound a month ago - thanks for the recommendation.  Ovarian suppression was recommended too - I'm on the fence on whether to have an oopherectomy or do ovarian suppression shots.   Have you dealt with this?   

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2012

    Last month I just completed two years of ovarian suppression.  It was recommended at the time that I consider doing Lupron or an ooph.  I chose the Lupron and did well.  It was an easy choice for me because I was 53 at diagnosis, so I decided to do it for the two years with the hope that it would throw me over into permanent menopause.  So far, my estrogen levels are low.  We will keep checking and if my estrogen levels begin to rise, I will continue once again with the Lupron.  Before being diagnosed with bc, I had a history of polyps.  They seem to have plagued me since I started the Tamoxifen.  The Lupron was supposed to counter act the Tamoxifen and reduce the polyps, but that never happened.  On Wednesday, I had my 3rd D&C in two years and am waiting for the biopsy results.  I am hoping that if everything is negative, I will continue with the Tamoxifen for another 6 months and if I have "issues" then will consider taking out some of the plumbing....My goal is to take the Tamoxifen for 5 years and then CONSIDER taking an AI afterwards......

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited March 2012

    vr   I hope that you have good results from the bx.   Goserelin is the drug given for ov suppression, where I live now.   I'm concerned that when we move, this drug may not be available and I would need to switch.   This, coupled with a fear of needles, is pushing me more towards having an ooph done.  It's funny to think that I'd rather go under and have surgery, than get a few injections.   I'm 50, in the throes of peri-menopause anyway, so am giving the ooph serious consideration.  

    Although I wasn't diagnosed with mucinous bc, I notice that our dx is similar.  I was multi-focal, the largest mass was 1.8 cm, low grade, ER/PR 90/60, oncotype dx score 14 and 11.   The oncs that I see these days have little interest in me, I guess this is a good thing.  

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2012

    Joy...My MO pretty much yawns at me too.  The breast surgeon is even better.  I wait an hour or two to see him for at most 6 minutes...and he spends one of those minutes tying his shoes....Surprised

    Honestly, speaking of shoes....if I were in your shoes...I would first try a few months of Goserelin and see if you have any side effects before you decide to get an ooph.  Make no mistake about it...an ooph is a big deal and is irreversable.  Some other sisters might chime in about their experiences...good or bad...but I honestly wouldn't be in such a hurry to go there especially if you are on the cusp of menopause.  I've had major and minor surgeries, so I'm not one bit afraid of surgery....but I like to keep as many body parts as possible....IKiss

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited March 2012

    Thanks for your input - what you say makes sense.  The onc here in Budapest discourages the ooph, saying that no woman in Hungary ever gets her ovaries taken out, unless it's absolutely necessary. He equates an ooph with female castration.   Guess he's right, just never thought of it that way.   I will continue to ponder this - 

    And about the bored oncs - yup, don't know whether to be mad or to just yawn with them.  Tongue out

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