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Anyone on AIs when recurrance happened?

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  • DianeKS
    DianeKS Member Posts: 36
    edited November 2009
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    I was on Aromasin after taking Tamoxifen for 2 years. Diagnosed in 2006, had bilateral mastectomy with immediate reconstruction and SNB. BRAC2  +ve, so had bilateral oophorectomy in April 07.  Have recently been diagnosed with a lymph node recurrence 9/23 positive on axillary dissection, CT scan and bone scan clear. Possibly a false negative on the sentinel first time around which is frustrating  So, to answer your question... I was on Aromasin when recurrence diagnosed

  • tater
    tater Member Posts: 1
    edited November 2009
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    I was put on AI after completing chemo and radiation in 2005. Chose Arimidex and was taking it up to the day I was diagnosed with recurrence to bones.  Worked so "well" I had to have a hip replacement in August. The scary part is my bloodwork was stone normal every time, this was the first 1-year gap between getting bloodwork.  In that year it got into my spine, both hips and one spot on my skull.

    I really think AI's give us a false sense of security, at least it did me.  I also think it is totally wrong to do bloodwork just once a year. Maybe had I still been screened at every 3-6 months I could have saved my hip. Angry yes, bitter no.. at least not now.  Given the fact that so many of us have recurrences despite initial agressive treatment, wouldn't it make sense to monitor more frequently?

  • sue-61
    sue-61 Member Posts: 262
    edited November 2009
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    I haven't had a recurrance but saw the onc last wk and did ask if there is any way to draw some blood and do tests to see if the arimidex is working. He said nope.

    I did have bilateral mastectomies jan 2009. 

    Does anyone know if there IS such a test to see if arimidex is doing its thing? thanks, Sue

    edited to add: during my first visit with the ONC, he did tell me that I have a 5-10% chance of recurrance within ten yrs .....at least that's what I think he said!

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited November 2009
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    tater, I had blood work every 6 months that my primary did.  My onc didn't because she saw what tests he ran and no need to repeat them.  She would have done blood tests one time a year.  HOWEVER, she did do blood work right before I found out I had mets to one spot in my spine.  The only thing "abnormal" was my calcium was elevated...10.8.  My tumor markers (which I've never had) was normal..oh, one was only a couple of points high.  My Alkaline Phosphate (isn't that the one for bones) was normal.  She repeated the tests again and the calcium came down to under 9 and the alkaline phosphate was still normal.  She also checked for parathryoid...nothing..LOL  So, blood tests do not always tell us much when it comes to mets.  However, I would not have known about the mets to my spine if not for the CT scan and bone scan that she also ordered.  These scans were not ordered to fine bone mets (she threw in the bone scan at the last minutes since I was going to be there anyway..LOL).  She was looking for something else that I had complained about.  I was complaining about my LE arm and she was looking for something in that area..another growth or nodes..don't know.  But she had a surprise....bones. 

  • sue-61
    sue-61 Member Posts: 262
    edited March 2010
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    BuMP, very important topic! as there are no tests to determine effectiveness of AIs

  • kalyla
    kalyla Member Posts: 14
    edited March 2010
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    After finishing chemo and radiations, etc I started with the ai Femara in September 2008. I was rediagnosed stage IV in December 2009, mets to the lungs and bones. Even though I was finally "officially" stage iv in December, I'me sure those mets were brewing for a while before things got bad enough for me to get to the doctor. I'm thinking I started loosing energy in the summer. So, ai's lasted me less than a year, I'd say.

  • sue-61
    sue-61 Member Posts: 262
    edited March 2010
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    Kalyla, sorry to hear that. What treatment are you having done? I hope you are feeling well.

    The reason that I "bumped" this topic is that I did ask my ONC if there was any testing that could be done to determine if the Arimidex is effective. His answer (he flunked the "bed side manner course" at Harvard) was no, but if I got mets we would know it's not working. Sue

  • AussieSheila
    AussieSheila Member Posts: 439
    edited March 2010
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    Add me to the list ladies,

    Due to crippling pain in whole of body and GP saying I had arthritis, I lived with it until I was almost crawling on the floor. Went to new GP and she referred me to Orthopedic surgeon who then sent me for bone scan.  That scan revealed mets all over the place from skull to knees, dx in Nov '08. Tumour markers were at 48, so started Arimidex + Bonefos immediately.

    Onc said no other treatments--chemo/rads--for me but the mets could be 'managed' for a long time.  Pain disappeared within weeks and normal life resumed.  Tumour markers dropped to 12 within six months so Onc decided no more scans in May last year.

    When I went for my 3 monthly check-up early Dec, I had a stiff neck, so she ordered another bone scan.

    Phone call at midday, two days before Xmas, from Oncs office telling me to get down to hospital before 5pm that day to have MRI, as I had something 'new' on my spine in neck. I was to go there prepared to stay for 2 weeks. I was told MRI was to find out if abnomally was arthritis or mets.

    After dropping all Xmas preparations and driving for 3 hours to get there, I had the MRI and then was shown into a room with 3 other women in beds and presumed that I was to take the fourth bed.

    Dr eventually turned up at 8pm to tell me that the new lesion wasn't on/near my spinal cord . . . . huh? Apparently, I was in extreme danger of whole body paralysis and/or death if that was the case!

    First I'd heard of that possibility. He still didn't know whether it was cancer or arthritis. Come back in 2 weeks to arrange radiation tx. DH and I almost ran out of there after that.

    Rad Onc said the rads would put the new growth cells to sleep (what happens if they wake up?) and hit the neck pain on the head.  Had ten hits of rads to throat and back of neck late Jan. 

    I have not seen my usual Onc since early Dec but, the ones I have seen, say I have to keep taking the Arimidex as it is working on the 'old' growths, keeping them at bay.

    I have to say though, that I have lost confidence in the whole process. I don't really trust the medico's or the medication system anymore.  A year ago I thought I could live for a long time on the protocol I was using, now I might not be here at Xmas.

    Sorry for that downer girls, but you all know how that goes.

    Sheila.

  • nmi
    nmi Member Posts: 112
    edited March 2010
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    bump

  • susanmary
    susanmary Member Posts: 8
    edited March 2010
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    I was on Tamoxifen for about 13 months and had a recurrence. Same when I was on Arimidex which was for about 15 months. I have now been on Aromasin for the last 4½ years, and so far, so good. The onc want me to do another 5 years on Aromasin as some studies suggest that the recurrence can be lowered by some ? percentage (think it is 30%). Can't remember all the ins and outs, as I had begun the countdown to 5 years, and then now have to get my head around another 5 years of cr*p - aching joints, burning feet and not to mention the weight gain!!!

     Take care

    Forgot to mention recurrence was localised - on the scar of mastectomy

    I have mets in the ribs

  • jillincc
    jillincc Member Posts: 5
    edited March 2010
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    Hi ladies.  I finished my rads in Jan for Inf. Mammary Carcinoma, St 1 Gr 1 right breast, nodes clear after lumpectomy and node biopsy in Oct.  Went in for 1 st mammo since original dx on March 9.   Dr. ordered bilateral.....which turned out to be a God send.  Suspicious area in left breast, bx shows DCIS, Gr 3.  Lumpectomy is scheduled for 3/26.  Has anyone had this shocking news at their first post treatment mammogram?   Still in shock with the diagnosis.  First surprise was bad enough...but 5  months later?  Damn cancer!

  • nmi
    nmi Member Posts: 112
    edited March 2010
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    jillincc, were you on an estrogen blocker also?

  • jillincc
    jillincc Member Posts: 5
    edited March 2010
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    Yes, I started Arimidex in Nov.

  • nmi
    nmi Member Posts: 112
    edited March 2010
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    Wow, that is very scary!   Wishing you the best outcome. Please keep us posted how everything is going for you.  ((((Hugs))))

  • suzib
    suzib Member Posts: 1
    edited April 2010
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    My Dr. wanted me on Arimidex but I couldn't tolerate it.  He told me it only increases your chance of non-recurrance by 5% and we each had to weigh the side effects for our quality of life against the risk. 

  • vvalenti
    vvalenti Member Posts: 2
    edited April 2010
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    First post here...but thanks to all for posting you stories.  It is extremely helpful to know others dealing with this.

     I was originally dx 2004 Stage 3a 10/15 pos nodes EST+PRO+HER2-

    Mastectomy, Dose Dense Chemo, Rad, BRCA2+ profilactic Mastecomy DIEP Recon, Oopherectomy 06. Tamoxifen 2.5 yrs switched to Aromasin 3 years until recent tongue issue--> bone mets. Stanford Dr. never did tests/scans, only symptoms, which he has performed studies where the symptoms usually show within months of showing on scans.  MRI/BoneScan/CT confirm spots in bone, but getting biopsy for confirm.  Interesting symptom...half of my tongue lost function!  Turns out a tumor started in bone in skull and is pushing on hypoglossal nerve/cranial nerve VII, which controls the function of the tongue.  That was the true symptom, as knee pain was confirmed to be arthiritis.  Now, hip will be biop.

    Plan is RAD with review of bone biop to determine new hormone therapy as aromasin isn't doing it's job anymore. 

    Valerie

  • vvalenti
    vvalenti Member Posts: 2
    edited April 2010
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    yes, aromasin AI for 3 years after 2 years tamoxifen...bone mets!  Didn't work for me...

    I was originally dx 2004 Stage 3a 10/15 pos nodes EST+PRO+HER2-

    Mastectomy, Dose Dense Chemo, Rad, BRCA2+ profilactic Mastecomy DIEP Recon, Oopherectomy 06. Tamoxifen 2.5 yrs switched to Aromasin 3 years until recent tongue issue--> bone mets. Stanford Dr. never did tests/scans, only symptoms, which he has performed studies where the symptoms usually show within months of showing on scans.  MRI/BoneScan/CT confirm spots in bone, but getting biopsy for confirm.  Interesting symptom...half of my tongue lost function!  Turns out a tumor started in bone in skull and is pushing on hypoglossal nerve/cranial nerve VII, which controls the function of the tongue.  That was the true symptom, as knee pain was confirmed to be arthiritis.  Now, hip will be biop.

    Plan is RAD with review of bone biop to determine new hormone therapy as aromasin isn't doing it's job anymore. 

  • nursecal
    nursecal Member Posts: 34
    edited May 2010
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    NED = no evidence of disease.  God bless and hope all goes well.

  • bethen
    bethen Member Posts: 2
    edited May 2010
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    Just diagnosed with recurrence  on mastectomy side, two lymph nodes under the collar bone, but between the pectoral muscle and the rib cage.  E+ P+ Her2+, have been on arimidex for exactly 4 years at the time of diagnosis.  Next week starting 6 cycles of Taxotere (I dread that one) followed by another year of Herceptin and of course rads.

    Betsy

  • Enjoyful
    Enjoyful Member Posts: 278
    edited May 2010
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    Betsy,

    I had a recurrence in a few lymph nodes above the collar bone on the "bad" side, and also had 6 cycles of Taxotere.  As bad as that chemo is, it knocked the cancer out and the latest scan showed NED.  Hang tough through the taxotere; it's nasty but I hope it does the trick for you!

    E

  • momto2angels
    momto2angels Member Posts: 17
    edited May 2010
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    7 months pregnant in May of 2007 when I found my ER+PR+HER2- breast cancer.  HUGE with 5 out of 23 nodes.  I was told the estrogen was feeding my cancer.  Started AC while pregnant, had my baby boy, then finished with Taxol.  Put on Tamoxifen.  Double mast. in November 2007.  Complete hysterectomy in Sept 2008 (to help with estrogen).  Put on Femara (because it said it was "better" than Tamoxifen).  No symptoms, but when I went in for my 6 month zometa infusion in Jan 2010 (preventative for bone mets and distant mets), they found that my cea levels had gone up ever so slightly.  They were re-tested in Feb 2010.  Officially diagnosed with Liver mets in March 2010.  Had liver biopsy in March 2010.  Was told (new news to me) that my HER2 was borderline in 2007.  Had a FISH test done and was told my cancer was HER2+!  Was it that way from the beginning?.. I don't know, nore do I want to find out at this point... looking FORWARD!!

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    BUMP.

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Anybody who has recurrence, please add what lab drug was coming from

  • dtad
    dtad Member Posts: 771
    edited June 2017
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    I see this is a very old thread. That being said the way the title is worded, "Anyone on anti hormone therapy when recurrence happened", the answer will probably be yes, many of us. Since hormone positive BC is the most common type of BC, and with most being treated with anti hormone therapy, then most who have had a recurrence will most likely recur while taking it. to be clear, that is not to say most of us have a recurrence!

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    Very old thread. In April I was diagnosed with a reacurrance of my original tumor. I was on tamoxafin at the time. I'm on Arimidex now. I had been on femara for 2 years and then went on tamoxafin. All together 6 years between both.

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Yes, it is old but it asks the question I would like the answer to. It would be nice if there were some statistics out there too

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Aromatase Inhibitors To Prevent Breast Cancer Recurrence: How Much Treatment Is Enough Treatment?

    June 6, 2016

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    Here at the annual meeting of the American Society of Clinical Oncology in Chicago, we see results of eagerly awaited clinical trials that have involved hundreds or even thousands of patients, millions of dollars, and years of hard work and analysis. The results can be a success; they may fail; but quite often fall somewhere in between. And even when successful, the results may not be as clear cut as one would like.

    Such is the case with an important trial whose results came were reported at this meeting and simultaneously published in the New England Journal of Medicine about the use of aromatase inhibitors (AI) in post-menopausal women with breast cancer. As is so often the case, the researchers are highly regarded, the study well designed—but even with all the best efforts possible, left open are some extremely difficult questions.

    In the current study, the question at hand was whether extending AI use from five years—which is the current standard of care with these drugs–to ten years resulted in any additional benefit among post-menopausal breast cancer patients whose cancer had not spread beyond the lymph nodes.

    The study has received considerable press, and the reviews from the experts were somewhat mixed. It remains to be seen whether and how this study will influence clinical practice.

    Briefly, post-menopausal women diagnosed with primary breast cancer were divided randomly into two groups: in group one, the women had already received approximately five years of treatment with a type of drug called an aromatase inhibitor (AI), which depletes the body's estrogen production in an effort to prevent the breast cancer from retuning. They were then randomly selected to receive another five years of the same type of treatment with an AI. In group two, the women had also received approximately five years of an AI drug were then randomly chosen to receive placebo pills for another five years.

    The press release headline version: women who had received the additional five years of treatment (or a total of about 10 years' treatment with an AI reduced their chance of the cancer coming back by one-third (what is called the "hazard ratio"). That's a significant finding, but tempered somewhat by the fact the chances of recurrence were somewhat low in the first place. In fact, rates of what's called "disease (or progression) free survival (essentially, the percentage of patients whose disease did not recur during the study) was 91% in the women who got a placebo, and rose to 95% in the women treated with 10 years of AI medication. So while the "one-third" drop is correct, it's actually a 4% absolute reduction in the chances that the breast cancer would return

    Importantly though, the chances of death 10 years after the start of the study were almost identical: 93% in the AI group and 94% in the placebo group. There was also a substantial reduction in the risk of breast cancer in the opposite breast at 10 years of follow-up for the entire group: 3% for the AI/placebo group; 1% for the AI group.

    Essentially, what these results tell us is that if a post-menopausal woman takes 10 years of an AI after diagnosis of a hormone sensitive breast cancer she will delay recurrence of the breast cancer, but she will not delay a death from breast cancer. The hope is that over time, those survival benefits will show up. But remember: these women were 65 when they were enrolled in the study, so the potential years of life gained at this point will be somewhat limited.

    When the investigators discussed the results of the study, they acknowledged that most of the benefit was from avoiding the diagnosis and treatment of a new breast cancer in the other breast. It did not come from substantially reducing more distant recurrence, such as spread to bone, liver, lung or brain.

    There are additional points that need to be emphasized in understanding the complexity in interpreting these results, especially when a woman currently taking the initial five years of adjuvant AI treatment is trying to make the decision whether to continue for another 5 years.

    68% of all the women in this study had also received about 5 years of tamoxifen treatment before starting on their first 5 year round of AI treatment which occurred before they were randomized to an additional 5 years of AI treatment or placebo.

    Tamoxifen is a drug that was approved in the mid-1970s for the treatment of recurrent estrogen sensitive breast cancer, but then became a standard workhorse for the adjuvant treatment of breast cancer (treatment to prevent breast cancer after primary surgery and radiation. So, many women had taken 10 years of medicines before they entered the study and randomized to an additional 5 years of treatment or placebo. That's a long time to be treated.

    And even despite that length of time on preventive therapy, 5% of the women who got the AI relapsed either in the other breast or elsewhere in her body. So that observation points out the serious problem with breast cancer that many people ignore: Most women with localized breast cancer relapse more than 5 years after diagnosis and treatment. In addition, according to the researchers, 5% of women with even the earliest most favorable breast cancer will die from their disease—some many, many years after diagnosis—even with all of this treatment aimed at preventing recurrence and death from the disease.

    The study reported that there were not significant differences in quality of life between the two groups. However, in the women who received the additional five years of AI treatment, there were more fractures than those who received the placebo pill. In fact, 14% of the women in the AI treatment group had a fracture compared to 9% of the women who had received the 5 years of placebo treatment. Even though most of these fractures may be in less significant locations, they can still be problematic for women on AI treatment.

    So what does all of this really mean? Does it change the way we will treat post-menopausal women with primary breast cancer? Is more really better?

    That's where the fog comes in:

    We know that breast cancer can recur many years after diagnosis. We have learned through other trials that 10 years of adjuvant tamoxifen decreases the risk of recurrent breast cancer compared to 5 years of treatment. But the standard of care has moved on from tamoxifen to AI drugs. We don't use much tamoxifen any longer to prevent breast cancer from returning in post-menopausal women. And prior to this clinical trial we didn't have any good evidence that additional treatment beyond the currently recommended 5 years of adjuvant therapy with AI drugs really improves outcomes.

    This study suggests that if you take an additional 5 years of treatment (or 10 years total) with an AI you will delay recurrence, but you won't prevent death from breast cancer. Some have suggested it may be too early to see that benefit, so maybe it is premature to say conclusively that the additional 5 years of treatment doesn't extend life. In addition, AI treatment reduced the risk of a breast cancer in the other breast by 2% over 10 years. That's a real difference in statistics but again it isn't an overwhelming number—but may make a lot of difference to women who can tolerate the AI medicine and don't want to risk more treatment for another primary breast cancer even if that cancer is unlikely to threaten her life.

    So will this study change the way doctors treat women with primary breast cancer? If a woman is post-menopausal with hormone receptor positive breast cancer will the doctor now recommend 10 years of AI treatment instead of 5 years as is currently recommended?

    The experts who discussed the study didn't exactly say "absolutely." They did suggest doctors and their patients have a discussion on the benefits and risks, explaining what we know and what we don't know as a result of this research. The same experts put a strong value on preventing another breast cancer from occurring, while others in the audience questioned whether the treatment with its associated cost, inconvenience and risk of fractures was worth avoiding a relatively small number of new breast cancers with no proof yet that it extends life.

    So when asked the question whether this report will change clinical practice, one has to be a bit sanguine, since the results are not as straightforward as one would like. Simply put, different doctors and their breast cancer patients are going to come to different decisions.

    As I wrote in the beginning of this commentary, life is not always clear cut. Neither is clinical research. We all want a crisp, clean answer to our questions. As this study shows, that is frequently not what we get.

    When one thinks about it, that's why the art of medicine—helping our patients make the decisions and choices that are best for them—remains an important part of our medical heritage and our current medical practice. I suspect—and hope–it will always be so.

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  • chef127
    chef127 Member Posts: 226
    edited June 2017
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    Old thread indeed! But the concerns are unchanged and it seems NO improvement on tx's, unless you have a recur or move on to stage IV while suffering the ravages of the AIs or tamo and then on to more toxic and expensive drugs. If your ER+ there is only one medical option...........

    I am almost 6 yrs out and refused chemo and Hormone tx even tho I was given a poor prognosis. So far no sign of the beast lurking to take me out. It's a crap shoot.

    When my estrogen was depleted during menopause my 35 year old breast lump changed and became cancer. 2 years prior my fairly benign Multiple Sclerosis progressed and left me disabled overnight. I'm convinced it has everything to do with the lack of estro??????? I'll keep what little estro I have left and take my chances.

    SickTired

    There has to be research done to see who can forego the AIs, I hope I made the right decision.

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Thank you chef127 for chiming in. The one medical option is?...leave it alone? I'm glad I got started thinking about this after two years rather than five or more. I want my little bit of estrogen too. It is perplexing that menopause and reduced estrogen causes cancer (maybe so then we reduce estrogen more? Something is missing here.

  • Houston2016
    Houston2016 Member Posts: 248
    edited June 2017
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    Hello Ladies, I'm glad I found this thread since it is exactly what I'm looking for. I just finished rads Jan.31, 2017. I'm been thinking about recurrence and how I can foresee or prevent it. I'm on Anastroloze and it gives aches on my hips, stiffness and sores on toes, and finger. I fight this with stretching and exercise, I do take vitamin D and calcium and whole list of herbal like green tea extract and reservatrol. With BC you just have to fight it with everything you have and not based solely on the pill. Back to the OC, I'm not happy that she sees me every 03 months, and don't do any tests or scan, she doesn't do even a CBC, tumor marker, bone scan, nothing she said its symptom driven. Heck, I don't want them to find Mets after six months, the sooner we know it the better. Some ladies on here mentioned they get blood work done during check up so I think it's necessary. Thanks everyone.