Stage 1, grade 1 and pre-menopausal
Comments
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Thanks for sharing that interesting paper with us VR, it makes sense that there may be something different about those of us with grade 1 and high onco DX compared with those with higher histological grade and will be reassuring for those with grade 1 and intermediate score who opted for no chemo!
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This thread http://community.breastcancer.org/forum/108/topic/785964?page=1#post_2975901 had some info about Ki-67 and how the Oncoscore could be come back higher than expected even though the grade was low. "doxie"'s posts explained that Ki-67 shows cell proliferation rate but it could include healthy cells doing repairs after a biopsy and they could bump up the rate. It sounded like it could be hard to separate out only the cancer cells proliferating to get a Ki67 score and it was also subjective depending on the samples looked at.
Maybe someone can explain it better.
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Lee... You are correct. There has been some evidence that depending on the sample... If there were inflamed cells, that could affect the Oncotype score. This study suggests that thought as well...
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VR - interesting paper. My results were a bit odd - Grade 1, Stage 1, pre-menopausal (age 41), highly ER/PR+ AND no inflammatory cells nor evidence of increased stromal cellularity AND Oncotype 26.
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Had my first appt. last week with a Hungarian oncologist that specializes in breast cancer. Got this contact through a friend. I'm hopeful to get continuing care here in Budapest when needed, supplemented by visits back to the States every 6 months. I have felt pretty much alone in a foreign country, with little access to cancer care.
A positive about this visit is that I will begin Zoladex injections. This oncologist encourages ovarian suppression and I'm super happy to find that she does the injections. I have a Zoladex prescription in hand and will have the first injection next month. Can't believe I'm saying this, but Yay!
As I am peri-menopausal with very irregular cycles, this oncologist believes that the injections will jump start menopause for me, and said that possibly 3 injections would be enough and then could be discontinued. Hmmm - haven't heard this before. And from what I understand, estrogen levels cannot be accurately determined while on Tamoxifen. Who knows what estrogen levels I will have after 3 doses. Does anybody have thoughts on getting just 3 injections?
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Cyano, after I posted that study, I realized it was already posted before several months ago on another thread. Clearly, from the info from your pathology, the take away message is that the more we learn about breast cancer, the more we realize how much more discovery and learning STILL needs to occur.
On a different note, I recently came across a study on Pubmed regarding my type of BC, mucinous and contacted the lead researcher to clarify for me what I had read because everything that was mentioned regarding risk factors were contrary to my history. She was kind enough to reply and verified what I had read.
Joy... I am sure Annice will chime in regarding you having only three injections. My humble opinion is that medicine sometimes includes artistry. I don't think any doctor knows exactly how long one would need zoladex/Lupron injections to throw a woman into complete menopause. When my doctor and I decided that I should do two years of injections, we based that decision on the fact that my sister and mother entered menopause at age 55. I was diagnosed at 53 and had regular periods. Could one year of injections have been enough? We will never know.
I am not sure about the accuracy of the statement that Tamoxifen might interfere with checking your estrogen levels when it's time to measure them to determine if you are menopausal. With that said, I think your doctor is wise to suggest only doing three injections and then beginning to check your levels. If your levels begin to rise and in fact you are not menopausal, you can quickly resume more injections. Will the injections throw you over the edge and succeed in putting you in permanent menopause? I think that's quite possible. In my situation, the two years of injections seem to have succeeded. I am six months out from my last injection and so far, I am menopausal.
Again, if you are going to take Tamoxifen, make sure you get a baseline transvaginal ultrasound if you haven't already.0 -
Joy, tamoxifen can cause your estrogen levels to rise as it competes with and blocks tamoxifen at receptor level and therefore estrogen measures high on tamoxifen but the high level is effectively spurious because the estrogen is ineffective as it can't bind the estrogen receptor. However tamoxifen does not affect your - LH and FSH which will track your menopause status when you come off the zoladex. It is virtually impossible to predict how long it will be until you become menopausal. In VRs case 2 years up to the age of 55 was v logical because the average age of menopause is 51 and the vast majority of women will be completely through by 55. If you are younger (forgive me I can't remember how old you are although I am sure you have posted your age before) then its pure guess work as to how long you would need the zoladex.
Good luck with it I hope you don't get any side effects. I notice the hot flashes but i just use a bit of mindfulness when I get side effects and think -yes, awesome it's doing it's job
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VR Thanks for the response and annice, for the information on estrogen and Zoladex. I now know more on what questions to ask the oncologist. Whatever the Zoladex treatment is, feel so much better about the opportunity to get it.
annice I'm 50, have been peri-menopausal for a couple of years. Mother went through menopause at age 55. It's wishful thinking that I am on a faster track to menopause than she was, time will tell I guess. Tamoxifen is giving plenty of mild hot flashes, now I can expect even more LOL
I'll post again on tests run and what this oncologist recommends. Thanks again so much for the responses.
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I am coming up on my first year anniversary of diagnosis. The oncologist here in Budapest has ordered a breast ultrasound and MRI for my yearly checkup. This wasn't mentioned by my onc in the States. Are these tests routinely done, as a yearly checkup? I'm not unhappy to get these tests done, just wondering.
Thanks ~
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Joy... Interesting that you brought up this subject. I am 4 months away from my third anniversary and I am having my first post diagnosis MRI in a few days. Every six months I get a sonogram because the mammograms missed my tumor. I have annual mammos on my good breast and six month mammos on my bad breast. While the breast surgeon thought I should have annual MRIs, the radiologist, who I think is terrific, didn't think I needed MRI's that often.
Good luck! Hope all goes well!0 -
JOy before my BMX I was to have yearly MRI's and yearly mammo's and US alternating every 6 months. Mine was because I had very dense breast tissue that mammo's did not read well and missed every lump I ever had.
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How often to have imaging is a very good question. I am not sure there is a definitive answer. It's arbitrary and depends on individual circumstances. Yearly MRI is prob only needed for women whose cancer was not picked up on mammo (as in my case). Otherwise a combination of ultrasound and mammo should be very adequate with ad hoc MRI. It is logical to scan more frequently in the early years as recurrence rates are highest in the first few years after initial diagnosis. Of course distant mets would not be picked up with this surveillance imaging!
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Interesting that there really isn't a guideline for this. I have reconstruction with implants on both sides (one was prophy), so mammo is not an option. Cancer was picked up on mammo, so the ultrasound I guess would be fine. The follow-up MRI an additional check - seems redundant though, unless something is found. I am a curiosity here, having had BMX with immediate reconstruction. In Hungary, reconstruction is not performed until at least 2 years post surgery. This MO is being very diligent about my checkup, happy about this.
Thanks for responses ~
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...one last point...Prior to my diagnosis, my breasts were also very dense. Thankfully, I was getting mammograms and sonograms and the sonogram picked up the cancer. Once I was on ovarian suppression, with time my breasts became less dense and the mammograms became easier to read. With that said, I now wonder how often I need to see the breast surgeon. Some women have mentioned they go every six months for the first five years. This is what my oncologist recommends. Somehow, for me, I think after the first two years, annual visits should suffice. I have six month visits at the oncologist, gynocologist and radiologist. Not sure what seeing the surgeon every six months brings to the party....
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VR Two months post-BMX, I was dismissed by the BS and referred to the MO for continuing care. What does a BS do at a routine checkup?
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I'm curious about the follow-up with the BS too. At my check-up after surgery she said, I'll see you in a year. Afterwards I really wondered why. I'm seeing a PS so I would think he'd check things out. Is it just a way for them to make a little money? Cause when I saw her at my follow-up, the appointment only lasted about 10 mins.
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I didn't see my BS again after my UMX. My MO does all of my follow up and said she will refer me back to the BS only if she finds something concerning. I'm on a 6 month imaging schedule - mammogram/ultrasound and MRI/ultrasound. Mammogram didn't show my cancer either because I'm extremely dense. Ultrasound and MRI showed three masses when I was first diagnosed but on final pathology after my UMX there were five, so two tumors didn't show with any form of imaging.
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Follow up seems quite arbitrary and un-standardised and for grade 1 stage 1, we are all probably followed up more that is necessary!
Jen your story is quite worrying. How large were your 2 tumours missed on all imaging and were they invasive or DCIS? One of my tumours was missed on mammo but picked up on MRI. It was 8mm. I have just had my one year mammo and MRI and it was clear but stories like yours make me feel unsettled!0 -
My five tumors ranged from about 1.0 cm to 2.1 cm. They were all of the same morphology, all IDC grade 1. BS staged me based on the largest tumor (staged me as stage 1 even though I was over 2.0 cm because she said the size difference was so marginal). MO estimated my largest tumor took about 8 years to get to 2.1 cm (which coincides with my first full-term pregnancy at age 41, incidentally) and says it looks like it started as DCIS and then popped out as IDC in 5 different places. I had radiation even though I had a UMX because I had close margins, some LVI and because, basically, no-one really knows about tumor load. None of that changes my prognosis, though. Fortunately my cancer was very indolent. I would not have wanted to have had an aggressive cancer with that tumor load.
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That's something that there is very little literature on - multifocal but indolent tumours. So what was the stimulus to induce 5 lazy tumours in you (in my case 2) ?? And yet they are lazy tumours. Jenn have you had Braca testing? I have no risk factors, no FH, small slim all my life, breast fed both kids for a year each, healthy diet. I took birth control pills but how many times have I been told they are irrelevant!! Hmm
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Joy... I guess I am not in the same boat as you because I had a lumpectomy. Would you like me to let it rip and tell you exactly what my breast surgeon does at the appointment??!!! First off, I want to say he is an extremely, highly respected surgeon. Get's excellent margins on the first try. Does nice work when one has a lumpectomy. Compassionate and has a terrific staff. Now, regarding my examination.....after he does his minute or two exam, he then, and I am not kidding or exaggerating when I say this, begins displaying OCD behaviors. I have no explanation why this occurs in front of me, but the few times he has done it, I was dumbstruck. I guess some of those OCD behaviors work for him very well in the OR and probably make him the success that he is. But I am telling you...do you know what it's like to talk to someone while they are tying their shoes for the rest of the examination time? I know some people complain that they talk to their doctor behind a computer screen. But me??? I talk to the floor! At my last appointment he was scrubbing the base of the sonogram machine. And again I was talking to the floor! I guess he feels comfortable enough around me to do that.
I had my six month visit today with my oncologist and I asked him if I still needed to see the breast surgeon every six months. I held back from telling him how the surgeon behaves in front of me. He told me he thought it was wise to continue seeing him every six months. So stay tuned, my next appointment is in February. I can hardly wait!
Oncologist also said regarding exams...the risk of this cancer returning is low. However, as we age, our risk of another breast cancer goes up. I think the takeaway message is that we need a good radiologist to guide each of us. My radiologist spends a lot of time going over my pictures. With his expertise and with help from above, I think I am in good hands. I doubt he will miss a thing in the future. BTW...my GYN felt the lump. The radiologist was determined to find it. Mucinous tumors resemble cysts and are often mistaken for cysts. A first radiologist wanted to biopsy a different cyst. I chose a second opinion and have never looked back! The radiologist I use now rocks! Because of him, I sleep at night...0 -
VR Hmmm ...... I've heard that the most brilliant people are a bit odd? Your BS sounds a bit like my MO in the States. She doesn't make eye contact, and talks to her computer screen. At one appt., she left me in the exam room and never came back! My other doctors insist that she's brilliant.
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Joy... Oy!
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Ladies what on earth has happened to the communication skills of these docs?? Surely it is not enough to be brilliant if you can't communicate!!! My first oncologist who I sacked was a bit like the docs you have described. He may have known his cancers but his atrocious bedside manner didn't cut the mustard for me
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Annice... My doctor communicates....from the floor! I am not kidding when I tell you that the last time we spoke...he was on all four!
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and....at first, when he bent down with the paper towel he just used to dry his hands, I just assumed he spotted a speck of dirt and he was going to swoop down and wipe it off... But when he was rubbing it like he was shining someone's shoes....it was getting rather awkward..while I was waiting for him to get back up on his feet.... Quite a conversation when one of us was communicating from the floor....
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VR- wow what a story- the communication or lack of (social skills) that many physicians do is pretty scarey.
I see my breast cancer surgeon every 6 months for my nsp bilateral masectomy and he does quite a check up looking for any abnormalities. I actually think its good since no one else does what he does to the extent he checks things out. He really checks out his work, and underneath my arms.
I drive 2.5 hours and wait usually an hour plus but I feel he is looking to see if there is a problem. The MO and another local BS did not do the exam to this extent.
Maybe I am paranoid but I figure twice a year- why not?
best to all
Chocolate
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Chocolate...my surgeon does a VERY thorough breast exam as well TWICE a year. But so does my MO. In fact, the MO is even more thorough because he checks below my breasts! And then there's the GYNO who also gives me a great exam. In fact, he's the one who found the damn lump. So, with so many breast exams by so many terrific doctors, I really wonder why I need to see the breast surgeon TWICE a year...seems like the invitation list is way too long! That's SIX thorough breast exams a year! Plus the terrific radiologist!
BTW... I thought of you yesterday when I visited the MO. Asked him what the latest was regarding Metformin. He hedged by saying he's been in the business too long to make predictions. I asked him why he gave me O/S and Zometa while the data is still not confirmed. He said that in Europe O/S is pretty much the standard of care. He also is a good friend of Dr. Gnant and believes his data is extremely compelling when it comes to using Zometa especially in my age category. When I left his office I still wondered why he wasn't as enthusiastic about the Metformin. I brought it up during my previous appointments as well and again, I have never seen him talk excitedly about the drug. On the other hand, I continue to follow the research on Metformin, Zometa and O/S and while I am cautious optimistic about all three, pretty much all I've learned is..... to be very damn patient!!0 -
I ended up ditching my BS. I see my MO every three months hopefully will move to six months soon and get a very good BE each time. Also see my gyno and get a very good BE once a year. Had a BMX so no need for imaging. The behavior of some of the Dr's, OMG. I don't think I could stand it and would have to switch to someone that could look at me and talk. My MO's office uses the computer for everything and the MO types in his own notes. But when we are having a discussion he stops and engages in our conversation.
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....see I will not care about all of the appointments. I should have found this lump myself and didn't. Don't mind several helping hands to keep an eye out. In fact, I hope they let me get an MRI once a year.
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