Member of the "6 Month Watchful Waiting Club", Unite!
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isee,
The MRI was torture for me. I don't know if I can do it again, which is why I'm going to ask about the thermogram, or just stick with the mammos and ultrasounds, that would be fine with me. I can't believe they didn't give you anything to help you with the reaction.
I didn't know that Anne, that our risk is highest during the first 5 years, and especially the first 2 years after diagnosis. Nine years out for you; you must be doing something right.
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This is what confuses me-- I could swear that both my BS & my Onc told me that risk increases approximately 1% each subsequent year. Did I get this wrong? And again, if the above IS true, then why would the frequency of screenings typically decrease as the years pass?
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I believe that when docs talk about "increasing risk over time" they are making a general statement that refers to the fact that for all women, our breast cancer risk increases as we age.
Ages 30 to 39. . . 0.44 percent or 1 in 227 or 0.044% per year
Ages 40 to 49. . . 1.47 percent or 1 in 68 or 0.147% per year
Ages 50 to 59. . . 2.38 percent or 1 in 42 or 0.238% per year
Ages 60 to 69. . . 3.56 percent or 1 in 28 or 0.356% per year
Ages 70 to 80. . . 3.82 percent or 1 in 26 or 0.382% per yearBreast Cancer Risk in American Women
These same age-drive increases apply to those who have high risk factors. If you have a specific high risk factor that doubles your risk (as an example), it means that if you are in your forties, your risk would be 0.294% per year (just under a 1/3 of a percent per year) vs. 0.476% if you are in your 50s (just under a 1/2 a percent) and 0.712% per year (just under 3/4s of a percent per year) in your 60s.
Some risk factors - a genetic pre-disposition to BC, for example - may stay with you for your entire life. Other risk factors present a higher risk to those who are pre-menopausal. Still others present a higher risk to those who are post-menopausal (extreme breast density, for example). Most of the information I've read about ADH and ALH suggests that the risk is highest for those who are pre-menopausal, and that the higher risk tends to be exhibited in the first 10 - 15 years after the condition is discovered via a biopsy and declines in the years after that.
As for any type of BC risk increasing by 1% each subseqent year, I've seen that written on this board a few times but I've never found anything in the literature about BC risk, or in any studies, that supports that. momoschki, have you ever had BC? I know that many doctors say that for anyone who's had BC, the risk per year that they might be diagnosed again (with a new primary, not a recurrence) is in the range of 0.5% to 1.0%. That's the only place I've year a "1% per year" figure.
"Personal history of breast cancer: A history of breast cancer in one breast increases the risk of developing cancer in the other breast. With in situ cancer, the 10-year risk of developing a contralateral invasive breast cancer is 5%. With invasive breast cancer, the risk is 0.5% to 1% per year, depending upon a woman's menopausal status." http://qap.sdsu.edu/screening/breastcancer/facts.html
This 1% is cumulative over one's lifetime, but it's not cumulative on an annual basis. For example, if you look over a 5 year horizon, total risk will be 5%. Total risk will be 10% if you look over 10 years. So in that way the number is cumulative, as a measure of "lifetime" risk over all the years in one's lifetime. However, every year the risk remains 1% (aging issues aside). So if someone is not diagnosed for 3 years, her annual risk doesn't increase to 3%. It's still 1% per year. For every year that you are not diagnosed, you "leave the risk behind". The concept is similar to saying that you can't have an accident today for something you did yesterday. If your BC risk last year was 1% and you didn't get BC, you don't bring that 1% into this year. You leave that 1% behind and you only have to deal with whatever your risk is for this year.
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Bessie, that was so informative. Thank you for sharing this with us.
"In addition, women who have had two or more breast biopsies for other noncancerous conditions also have an increased risk of developing breast cancer. This increased risk is due to the conditions that led to the biopsies and not to the biopsy procedures themselves."
This paragraph from the link you posted, just jumped out at me like getting hit in the head with a brick. I was NEVER told this by anyone, none of the doctors involved in my care all those years, unless this is something new. I had my first biopsy at age 28 and a second one probably about 12 years later, both fibroadenomas, along with several cysts that had to be aspirated over the years.
I've been having mammos and ultrasounds for a very long time, long before age 40. I'm now 63. Maybe I should have just been having ultrasounds and not all the mammos when I was so young. I wonder if all the mammos could cause some of these problems?
Does anyone know if this LCIS diagnosis puts our daughters at any kind of risk? I hope not.
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Beesie,
Thank you, as always, for a clear and informative post that untangles the statistics. And no, I have not had a dx of BC, just of ADH (it will be 2 years ago this Feb.), which both my BS and Onc say ups my risk of developing BC to somewhere between 20--25% over the 15 years from when I was first diagnosed. I have read about risk being greater for women who are premenopausal when diagnosed-- while not officially menopausal, I have been teetering around the edges for a while now-- went 8 months with no period up until this summer when, bingo, 2 periods in a row. I'm supposing that risk-wise, this puts me somewhere in between the premenopausal and postmenopausal categories?
I realize that these obsessional types of questions tend to arise as the 6 month checks get closer. I have one coming up in about 3 weeks. It is helpful to understand the true meaning of the statistics... although, if I am correct, the 2.38% chance of a woman in her 50's (I am 55) developing BC annually says nothing really about any one woman's individual risk, correct? In other words, no one can say exactly what MY particular risk is-- the percentages you quote refer to BC incidence in large populations of women. Have I got that right?
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momoschki,
Yes, you are right that the stats on BC by age are averages based on all women. So this risk number includes some who are very low risk and some who are very high risk, and all those in between.
Since you have ADH, you can probably safely assume that your risk level is higher than average, but it's difficult to know how much more. Most websites says that ADH increases risk by 4 to 5 fold, but this is measured against the base level of risk, which is just the risk that we all have for being a woman, before any other risk factors are added in. This is not the same as "average" risk, which already includes within the number all the women who have ADH and any other high risk condition. I believe that "base risk" is in the range of 4% - 5% but it's been years since I've looked up that number.
One important point to note, however. The 2.38% risk for a women in her 50s is not an annual risk - that is the cumulative risk over the full 10 years of one's 50s. The average annual risk for a women in her 50s is 0.238% - less than a 1/4 of a percent per year. Of course, this average really is a blend of a slightly lower rate when you're 50, and a slightly higher rate when you're 59. But it's a good guideline.
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Beesie,
Thanks for this further clarification-- most helpful. Since you are so knowledgeable re the research and statistics, maybe you can clear up one last question for me : while both my BS and Onc can cite me percentages of women with ADH who eventually develop BC, no one seems to know what the rate of recurrence for ADH itself is. In other words, once dx'ed with ADH (and the lesion thoroughly surgically removed), what are the chances of being dx'ed with ADH once again at some point? I remember my BS stating that no statistics are kept on this.0 -
I was diagnosed with ADH on 6/30/10 and had an excisional biopsy. I was checked at two six month intervals and had an all clear both times. I was then told I could wait a year. Now as I am reading everyone else's posts, it makes me nervous that I am on a yearly checkup basis. Has anyone else been moved back to a year so soon after an ADH diagnosis?
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Hello Ladies!!! So I managed to get an earlier appointment with the doc ( she called me which now in retrospect makes sense ) and I went in to see her today. Turns out my test results are "normal for busy breats" and I should monitor every 6 months BUT my "routine" pap came back abnormal ( Atypical Squamous Cells ) and I'm scheduled for a Colcoscopy and possible biopsy next week. What are the odds? I go in for my boobs and my pap is what's off. So now I have to go find me a discussion board for that. HA!
Good luck ladies. I'll keep checking posts and come back after my 6 month ckecup. Thanks for the ( super ) warm virtual hugs!!! Sending a HUGE virtual hug back!!!
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Hi ladies,
It has been a long time since I was here. Over a year and a half ago back in March 2011. I had a birads 4-5 with a 2cm lump close to the outside near the arm, 2 o'clock. And a smaller barbell shaped one at 12 o'clock. They biopsied and found no cancer. Went back again for a mamo back in Feb this year. Looked fine. Well I made an appointment for monday because the 2 o'clock lump feels very tender and sore. Not burning, but I can feel it when I cross my arms or type. I heard that lumps that are painful usually are not cancerous. Has anyone heard different? Chances are I will need another biopsy. It feels the lump has grown and pressure on it hurts. Am I over reacting? My mom had OVCA and my paternal grandmother,her daughter and my cousin all had breast cancer.
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Oh wow Tessa I'm not sure about that but wouldn't draw any conclusions till you get more data. I wish you well & will be watching for your upcoming post of good news.
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Hi Teesa, I am so sorry you're having more issues. Even if the lump is benign, maybe it is best if they take it out - most doctors will do that if it is somehow interfering with your quality of life, like if you can't wear a sports bra, participate in your sport, have to take a lot of pain killers, etc. Make this argument to the doc if you want to have it taken care of. Not to scare you, but there is a thread out here somewhere titled "did you cancer hurt" or something like that and there are several stories of painful lumps not being cysts, but cancer. So you are smart to get it checked out, you are not over reacting. If I had something initially rated Birads 4 or 5, I would keep an eagle eye on that thing! Hope everything is ok!
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Teesa,
I had a painful fibroadenoma (benign tumor), it has probably been 10 years ago when I first discovered it. It was also painful and my dr. biopsied it. He said it was benign and we could just leave it alone. About a year later, it was noticeably bigger and more painful and really starting to bother me, so I went in and had it removed and tested again and still benign. So this is more than likely what you are experiencing too. It made me feel better to just take it out.
Melissa
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Thank you ladies. In fact I went in today instead. They felt the lump and said it was about 2 cm. First she told me that "its not painful, just tender" Like she would know how I feel? Sometimes I get a shooting pain that lasts for a few seconds, but most the time I think it is just sore from either my bra or from raising/crossing my arms. She also told me that I can have it removed if it is bothersome but its not medically necessary. But she said lets wait till I get a diagnostic mammogram and ultra sound and go from there. In a way I felt stupid that I was making something out of nothing. But I remembered the stories I read in the "does breast cancer hurt" thread. And even told her that sometimes a lump is a fibroadenoma than when they remove it, they have found cancer lurking underneath. Is it true if I get it removed that my breasts will be more sensitive to pain and burning? I Appreciate all your replies ladies!
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Tessa don't ever feel stupid for getting answers that may put you at ease. It's better to know for sure than to sit & worry. I'm so glad you're getting some answers & that someone is listening to your concerns. Peace of mind is priceless.
As for the pain & burning I don't know. I haven't had my surgeries yet since I'm still doing chemo still, but mine for mastectomies. For that I've heard it's not to bad. Someone on this theead will have a better answer for you that's in a similar situation. I hope you won't have to much pain. Good Luck!0 -
I am so glad you went in to have it checked! Just keep running it down. Nothing wrong with an ultrasound or extra films - I am not sure you can overdo the diagnostics in this "realm" and the docs are pretty stingy, so when offered, jump on it - that's my philosophy. I am not one to just ignore things and hope they go away - just because I am really hard on myself by nature, so if I find out later is was something and I did nothing about it, I would have a hard time letting myself off the hook.
Sending you an understanding hug!!
To TallM, thanks for being here with us! I just love your picture, you look like a Hollywood star!!! :-)
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carpediem-lol thanks:) I'm happy to be here & lucky to have so many nice people:) That picture is what I looked like before all the "fun" happened. I hope to go back to resembling that picture again somewhat. My body has morphed so much I hardly recognize myself. For that matter some of my former students don't even recognize me:o
Oh well it's part of the process. have a great day everyone & TGIF:)0 -
So I guess I am now asking for entry into the club. After 2nd annual mammo/US/MRI (only last year)/then call back and bx for both breasts, I was told extremely dense, simple, complex and complicted cysts, scattered and clustered microcalcifications. Bx last week said bilateral fibroadenomas. Then see you in 6 months. Sheesh. And now I wait.
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Carpediem,
If it gives you and all the other ladies comfort, I've been a member of this club since 1994! I was diagnosed with LCIS and had lost my mother, along with a strange history on my father's side. I've held a prescription for Tamoxifen in my hands three times but never filled it. Over the years, I have had biopsies (ADH in 2008), genetic testing (negative), an MRI or two, and watched my sister be diagnosed (she's out 10 years now). The important this is that I've been clear all these years! Now at 55 and through menopause, I'm facing being being more proactive as my risk goes up and considering Tamoxifen again or PBMX. But, I don't at all regret waiting and watching for 18 years. Often, I would reconsider, listen to new statistics and pray alot for wisdom, but in between appointments, I lived my life for what it is and not for what might happen. It took a while to get to that point, but it is possible not to let the threat of breast cancer run your life. I hope the same for all of you who are waiting and making the hard decisions.
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TallM, I am sure you are still a lovely lady - that kind of amazing presence and glow comes from inside anyhow!! :-)
Vanilla pudding, love the name, awesome! Throw some bananas and Nilla wafers in and we're all set, maybe one of the best desserts known to mankind. :-) I am really sorry you're here with us. As oneagleswings points out, the vigilance will probably go on for a long time so best to settle in for the marathon and deal with it the best way possible and not let it paralyze you to the point where our quality of life goes away or you don't do what you love! I am super productive between appointments. I even wrote a book this year in 6 months, when other said it couldn't be done. I think my projects are all on 6 month rotations now :-) I am on the Jan/July schedule. Used to be June/Dec but it would mess with my holidays so I took control, let an appointment slide for a month, and got on the schedule that suits me best.
It will be ok. Reading stories out here has taught me many things, like there are millions of ladies living with breast cancer, not dying from it due to advances in medicine. Also, women have control over many decisions related to their care, medicines, trials, et al. You know, if we ever have that rug pulled out from under us at a 6 month visit, odds are we'll be early in the process since we've been vigilant (at least I hope, if the docs are right with their guessing!) and we will be calm and well informed. And have a great support network out here to turn to immediately! My time out here reading has lessoned my fears and I feel more in control.
Sending all of you wonderful ladies a hug tonight!!
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Thanks Carpediem! Actually the name Vanilla Pudding came from my snack as I was lurking in these forums trying to absorb all the information. Actually, I checked the pantry for Nilla wafers and my son must have polished them off this weekend. Thanks for the comforting words. Not happy about all the crazy junk going on inside me, but you are right, at least it is all being watched closely.
Knowing what I know now, I guess I should have realized something was going on when at 40 years old and my first ever mammo, I was called back for a closer look, then bilateral US, and the MRI. I thought they were just being thorough. Oops. I guess I have a really good baseline to compare too from now on every 6 months.
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oneagleswings,
Thanks so much for your post. It is good to hear from people who have had the ADH and just been watchful and have never had a DX of cancer. I too have had a prescription for Tamoxifen and decided not to take it. I always wonder if I did the right thing and it is good to hear that it has worked for you. Hoping you will always stay "all clear"
Melissa
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I was wondering is oneagleswings and mvspaulding would please share your stories about why you aren't taking tamoxifen- are the side effects horrible? I am just curious, also, I had a hyster a few years back but kept my ovaries (I'm 47) and I think I am now starting menopause. Is there a time when tamoxifen is no longer an option? Thanks so much!!
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Oh, boy, this could be a long one! Before I answer, I feel that I must say that I believe that Tamoxifen is a good drug and a Godsend to many women who have had a second cancer delayed or prevented. My mother took it experimentally in the early 80's - she was diagnosed at Stage 4 with reoccuring agressive mets and had a lot of experimental treatments which kept her alive for 9 years, for which I am eternally grateful. (She was treated in Pittsburgh, PA, which at the time was the epicenter of cutting edge breast cancer treatment). Tamoxifen played a big part in keeping her alive. If I had a hormone positive cancer, I wouldn't think twice about taking it to prevent a reoccurence.
It is in the prevention of cancer in high risk women like me that I have hesitated. At the time of my initial LCIS diagnosis, I was 37, a mother with small children and in very good health. I was being screened early simply because of family history - it resulted in a surgical biopsy in which LCIS was an incidental finding. Tamoxifen was offered to me with hope but without solid evidence about prevention (the studies had just begun). What influenced my decision at that time: 1. I couldn't see taking a drug that had the potential to make me sicker because of something that may or may not happen. 2. My family has probably a stronger history of heart disease and blood clots; I felt lousy for the short time that I took birth control pills and so was terrified of the blood clotting side effects, which are small in percentage but can be lethal if they happen, and 3. I wasn't sure I was done having children and really didn't want to be put into menopause (which would also increase my risk for heart disease).
Over the years, I have had lots of call backs, another biopsy showing ADH and much urging by my surgeon to take the drug, especially when the studies concluded that risk could be cut anywhere from 30%-50% for high risk women like me. It all makes sense, but still I hesitated and I have to admit that it was more a gut decision than a head decision. Also, my older sister was diagnosed with DCIS which was ER/PR negative. She had been diagnosed with LCIS 4(?) years previous to her cancer and had been hounded to take tamoxifen, even though she had DVTs with both pregnancies. It would have made no difference to the type of cancer she had. (BTW, she had mammosite radiation and has been clear for 9 years, thank GOD!). Several years ago, it was finally found that she and my brother both have double copies of a blood clotting factor which eliminates hormone therapy from her future for good. I was tested and found that I do not have the factor, so I am still a candidate. Her cancer, my mother's cancer, my LCIS, ADH and menopausal status make me the poster child for taking Tamoxifen, and I just saw a new surgeon and MO who prescribed it again. The answer to your question is that it is still an option even if you are through menopause, like me.
I posted a few days ago on a different thread that I am really in a quandry at this time about what to do. It is probably time to be proactive, but to be honest, I'm still concerned about the side effects of Tamoxifen. First, I admit I'm not a drug taker. I'm not on any medication of any kind right now and havent' needed anything. I've had terrible hot flashes and difficulty sleeping in going through menopause which about drove me crazy. The thought of going back there again is a real quality of life issue for me, as is the possibility of weight gain. I gained 20 lbs in the last several years that I'm trying desperately to lose. I really, really don't want to gain more and see that as a health issue in itself. I did read a study that talked about long term use of tamoxifen and hugely increased risk of hormone negative cancer. It is only one study, but that doesn't thrill me. Of course, I'm not going to know anything for sure about side effects until I take the drug. But I also have the thought in my head that if I'm going to be proactive, why not reduce my risk by 90-99% by having a PBMX?? It truly seems to make a lot more sense. But I'm thinking that it would probably make best sense to take the drug first, see if I tolerate it, and then make the surgery decision. At least that is what I think TODAY!! LOL!
Sorry for the long answer. Bottom line, do your homework, think about your own health (do you have a clotting factor?), tolerance level and talk it out with medical personnel and with people such as the ones you find here. Many say that they have no side effects or minimal ones. That's encouraging. Do what makes sense for you, not what I did just because I haven't had breast cancer yet. I may be a rarity, and then again, my time could be up at any point. It's complicated and a difficult decision, but the best advice is not to second guess yourself after you make it. You went with what you knew and felt at the time. Leave it at that.
Best of luck and many, many prayers for all of you!
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eagle----- these decisions are so complicated aren't they? With all you were dealing with at the time of your initial diagnosis, I can totally understand your decision. (you answered my question in my PM-thanks). I was 46 and completely done with having kids. I had been closely monitored since age 34 due to my mom's ILC, so I wanted to do something more proactive, but not PBMs. I'm so glad to hear you don't have the clotting disorder. You may want to look into evista as well. It works basically the same way as tamox, is slightly less effective, but also has less overall SEs.
anne
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In my case there were two reasons I decided against the Tamoxifen. 1. I was looking at a pretty major knee surgery in a couple of months and I didn't want the added risk of blood clots after that surgery. 2. I have endometriosis which I control with BC pills. I only have one ovary left because I had to have one removed due to a cyst and the endo. I was in so much pain and the BC pills keep that pain down. So, if I took the Tamox I would have to go off BC pills and either have a hysterectomy or take Lupron (which also has bad side effects) I guess it just came down to quality of life like eagles said. I didn't want to feel sick when I am not sick. And I was over having surgeries and didn't want to have a hysterectomy yet. Now, my BS is saying we could just wait until I go into menopause and take either the Tamox or something else at that point. But, I am 44 so not sure when that will be.
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Howdy everyone,
I just wanted to say that I also declined Tamoxifen...according to my oncologist it gave me about a 2% reduction in a reoccurance...and I too am worried about blood clots. Decided clots were a greater risk for me then another cancer...not to mention a reoccurant cancer could be treated...blood clot...potentially fatal. My cancer was heavily estrogen + and the BRCA2 mutation makes it highly likely that I will have it again at some point...hopefully it was the right choice to refuse Tamoxifen. I do think it is an amazing drug and has given many years of life to many many people though....just not for me unfortunately.
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Thanks for all of the great comments and info, I always learn so much from all of you wonderful ladies and it is so nice to talk to people who understand!! After all of these years of stops and starts, biopsies, et al I feel like the "boy who cried wolf" and I think my family and friends are sick of hearing about it, so I'd rather just be out here on BCO to talk about my concerns and fears. Hugs to all of you amazing women!
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carpediem, I know you have helped me in the past and still offer your kindness. You have helped so many!
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Thanks, Teesa! :-) I will be heading back for my 6 month check and a little more soon; I will need medical clearance to move overseas with my military hubby next year to a pretty austere locale. Not sure how this will go, we'll find out if it's meant to be or not, I guess. Thanks for being here for me on this crazy journey!!
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