Member of the "6 Month Watchful Waiting Club", Unite!
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Oh Melissa, I am so sorry to hear about your friend! Ugh. Sending you a hug.
Also about your Birads 4, darn it! UGH. I hope it gets cleared up quickly. Is your next appt this Wed?
I was on a long vacay for spring break, we did something different and just flew as far away from here as possible (without having to go customs!), got a car and drove the opposite coast for 8 days. It was amazing and great family time, lots of talking, laughing and relaxing. There was no rushing around, and we had afternoon flights which also took off the pressure. We all needed this, too much going on around here and much on the horizon, including a move to the Middle East due to hubby's new assignment and lots of uncertainty about schools, vehicles and our dog...trying to stay in that California state of mind for now...
I realized on the trip that I now have a lump in the area where they aspirated that compound cyst or whatever it was. Maybe it's the remaining part of the cyst, I don't know. I hate to go in there again. Will prob wait until the Jun 6 month check up unless things change. It's always something!!
Hugs and strength to all of you wonderful ladies!
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Whew! The Bi-RAds 4 was a typo. Should have been a 2. Got a copy of the report. Stable from last year. Nothing but mild background parenchymal enhancement with scattered nonspecific foci. Slightly more enhancement of subareolar area on one but stable.
No suspicious enhancement is present to suggest malignancy.
They are giving me the option of taking Aromasin since it doesn't have the clotting risk of the other AIs. I'm going to have to think about that one. Lots of tradeoffs. Not really concerned about the joint pain, but the bone loss, cholesterol effects & dry eye are considerations. Already have bad dry eye. Have mildly elevated lipids & can't take the meds for that because of having had ascites with the ovarian cancer. Live alone & like it that way. Bone breaks would be a bad problem with that.0 -
Melissa , so happy to hear that all is well. Aromasin is the only AI my MO would consider for me. She prefers Tamoxifen, even though I am post-meno. Oh well, best to you with whatever they decide to give you!
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OMG, a Birads typo, that's a first for me!! How crazy?! So glad it was 2, yay!Did anyone take responsibility for that error?!
Wow, Aromasin sounds like it has some side effects that will cause you some discomfort and possible problems down the road. This is a tough decision for you! I think with breast cancer the data is just not cut and dry enough to be able to make an informed decision - like when looking at how many women who didn't take aromasin had recurrence vs those who took it and did not? Well the women with recurrence might have had it without the aromasin anyhow. Those who took it and had no recurrence might not have relapsed anyhow. Gosh, I think you're going to have to go with your heart and gut on this one. Maybe give it a really good try and see - maybe tell yourself you'll do it for 6 months and reassess?
Sending you lots of hugs!
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You know, I keep thinking about this MRI report... This was only my second one so it was compared to the one done BEFORE my excisional biopsy last year. There was no reference at all to any changes or scar tissue in that breast. Do your MRI reports show scarring from biopsies?I mean, it could even see a little cyst on my humeral head but NOTHING as far as anything different in the breast?
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I don't know- that is a good question. I have no experience in MRIs but hopefully April or one of the other ladies can help!
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Hi, Melissa,
Just checked my MRI reports and they do mention previous biopsy sites in their description of both breasts. For me it just stated that there were noted biopsy sites and that the areas were stable.0 -
Melissa--so happy to hear the good news! I've been having yearly breast MRIs for 8 years; some of my MRIs mention "normal post-op changes consistent with lumpectomy", and some of them don't mention it at all. I think it just depends on whichever radiologist is reading it that day and their particular way of wording their reports. Some of them just like to focus on any thing suspicious and they don't mention the things that are not a problem.
Aromasin for LCIS? I did read one article that said it might be used for LCIS, but I don't think it has been well studied; interesting no doctor has ever suggested aromasin to me. But I think I will stay with my evista. I have mild osteopenia, so I can't afford any bone loss, and I'm a PT so I can't afford any more joint pain, and I have a terrible time already with chronic dry eye syndrome! (all SEs from loss of estrogen from my surgical menopause-no ovaries) Evista helps my cholesterol and my bones (as did tamox); I just take a daily baby aspirin to help prevent blood clots. (the risk for clots is lower with evista than with tamox).
Anne
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Anne, they are adamantly opposed to my taking Evista or tamoxifen because of my prior history of pulmonary embolism & the clotting risk. That is why the Aromasin offer.
That makes me feel better about the MRI report. I'm still not happy at all with them about the rating error.0 -
Melissa--OK, that makes complete sense since you have a history with a PE. Wow, that was a very unfortunate typo; I'm sure it caused you unecessary stress; but I'm so glad the outcome was a good one. Well, good luck with the aromasin if you decide to take it, I hope you tolerate it well.
anne
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It is reassuring to me to hear that others have not had issues with scar tissue on MRI's. I have an MRI coming up in a couple of weeks that I am already feeling fairly insane about. I have had a core needle biopsy, an excisional biopsy, and a bilateral breast reduction , so it's fair to say that a lot of tissue has been "rearranged." This will be the first MRI since all the surgeries 2 years ago and I've been concerned that scar tissue could potentially be confused with something more suspicious (although my BS tells me that the MRI can differentiate between the two.)
Has anyone had scar tissue cause problems on an MRI that led to further biopsies? I really don't want to go down that nightmare road again!0 -
momoschki - Unfortunately, I did recently experience an issue with this. I had my first MRI (and first f/u post dx) in February. The results showed three areas of concern (I was shocked), one of which was at about 1230. My original LCIS was dx and removed from one o'clock. Ultimately, the US biopsy that was now performed at 1230 showed scar tissue. Thinking that they perhaps had "missed" the area biopsied under US guidance - I was scheduled for an MRI biopsy....only to learn after about 40 minutes on the table that now nothing was enhancing at all. Good news - but confusing since it didn't make sense that scar tissue would enhance. The radiologist subsequently explained to me that while "old" scar tissue doesn't usually enhance, that sometimes "newer" scar tissue would. Must admit that I still am not completely comfortable with the sequence of events...but if something IS still lurking in there...I'm sure it will eventually be seen in one of my f/u mammos or next year's MRI. The one piece of advice I would offer and that I will DEFINITELY follow myself from now on...is that if something of concern is seen on an MRI...GET IT BIOPSIED UNDER MRI GUIDANCE!!!! I should never have agreed to the US guided biopsy as the 3 areas were only visualized when they added the computer color assist. I am definitely living and learning!
Best of Luck on your testing - I am wishing you an ALL CLEAR!0 -
ED,
So do I understand correctly from your signature that your lumpectomy was done in 8/12 and the follow up MRI done in 2/13? So, a 6 month interval? And I gather that this is considered "new" scar tissue? My last surgery will be 2 years out from this upcoming MRI, so let's hope that is enough time passed that it will not enhance. This will be the first MRI I have had since I had the original excisional biopsy in March of 2011.
Anyway, thanks for your feedback and insights. This whole 6 month thing just stinks. I just about get over the trauma of one test and then it's time for another! I swear I have PTSD from all of this crap.0 -
momoschki--I'm not an "expert" in this, but I believe that scar tissue can show up as "non-mass" enhancement on an MRI. I have had that happen, but they generally actually interpret it as scar tissue/seroma if it was in the location of the previous lesion. I have now had 3 MRI's. The first two, which were just after one of the surgeries, showed the enhancement, the third, which was about 4 1/2 months after the last surgery, showed the same thing, but less of it. They did state (before all DCIS was removed in last two surgeries) that they couldn't rule out residual DCIS, which was, in fact, there. Now, what remains is interpreted as scar tissue. They were more concerned about a nodule which lit up in the other breast, but that is also now treated as likely benign and BIRADS2. I am not scheduled for any more MRI's, and most likely won't be in the 6 month club. They do a 12 month follow-up. I think I'd feel less anxiety with the 6 month follow-up. I'll only be getting mammos and sonos.
I had three previous surgeries on that breast over a 17 year period, and those old surgeries did not show up on MRI, only the more recent ones. So, there is something about "old" vs. "new" scar tissue.
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Ballet, thanks for sharing your experience. This is somewhat reassuring. I am on the 6 month rotation, but somewhat different than the usual protocol: I have a mammo, followed 6 months later by US, then another mammo, and then MRI. Rinse and repeat, ad nauseum. So, an MRI for me every 2 years. I will have to ask the BS when I see her why it is not annual, which seems to be the usual practice.
So-- if you all can't already tell, I am already very worked up and in knots over upcoming MRI (5/2.). Just want this over with and clear so I can plan a great summer!0 -
Momoschki--my guess about your MRI is that MRI's show a lot of false positives. They might not want to give it too often. I won't be having ANY (now that the last one was a BIRADS2), which seems a bit strange, given that I received what many call a cancer diagnosis and others call pre-invasive cancer.
I will review my protocol with my BS as well, when I see her in May. I'm having the annual mammo and sono on the same day. I had to ask for the sono, but it was given readily (have extremely dense breasts). I'm at MSKCC, so I guess they don't do too much surveillance with DCIS, or at least this surgeon doesn't.
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Ballet, I am followed at NYU. And yes, I guess each hospital & doctor have varying protocols for high risk screenings. I think it's a double edged sword: on the one hand, I would be relieved to have permission to forgo the MRI's altogether-- on the other, I would be anxious that something would overlooked.
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I find friends that are not High Risk, do not understand what I or you all going through every 6 months. They go for a yearly mammogram and get on with their lives...no callbacks etc. That's why I'm turning to you. I don't post a lot but do consistently read what others are going through and send positive thoughts. I was diagnosed 2008 with ADH, my first ex bx. I was offered tamoxifen and refused. Do have hetergenously dense breasts. In 2011, calcifications found again, second ex bx revealed ADH again. Offered Tamoxifen, took it for 18 months with no side effects except or an occasional hot flash. Age 52, almost post menopausal....switched to Raloxifene. This past week, had Tomosynthesis and ultrasound added to 6 month mammo. Today I get a call to come back for further views, they won't tell me why, just mammogram is interpreted as "inconclusive". I said the Tomosynthesis must have picked up on something or the ultrasound and they said that the mammogram needs additional views. I'm confused. With dense breasts I thought, Tomosynthesis and ultrasound were a step above in finding abnormalities such as calcifications (DCIS), ESP with dense breasts. They wanted me to return this Friday but I can't get there until next Wednesday. I go to a large teaching institution. Any thoughts on why being called backed? Also, any tips on how to get your insurance to cover Tomo and Ultrasound, just in case!!!!!!!
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Momoschki--I, completely, relate to that feeling. The desire to avoid the stress of repeated imaging, and at the same time, the anxiety that something was missed. In addition, when we get benign findings, we almost don't believe them.
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Hi Grace--there shouldn't be any problem getting the ultrasound covered by insurance, especially if ordered by the MD and done on the day of the mammo. The Tomosynthesis, I'm not so sure about that.
About picking up the calcifications, what I heard, from my breast surgeon, was that mammos were good at that, and ultrasounds were better at picking up small tumors. Hopefully the Tomo would enhance the mammo. I have extremely dense breasts (polar bear in a snowstorm) and even with that, they picked up clustered calcifications, although it took a very alert radiologist to notice a change from 2009 to 2012, because nothing was seen by others in the intervening years. Anyway, I had way more calcs and ultimately DCIS than showed up on any imaging (the ultrasound was 100 percent clean).
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Grace,
I can't comment on the Tomosynthesis or the insurance situation, but in my experience, mammo callbacks have usually been due to the radiologist needing magnified views of something that is ambiguous. In my case, it has been "architectural distortions" or areas of overlapping tissue that needed to be repositioned.0 -
Grace,
I can't comment on the Tomosynthesis or the insurance situation, but in my experience, mammo callbacks have usually been due to the radiologist needing magnified views of something that is ambiguous. In my case, it has been "architectural distortions" or areas of overlapping tissue that needed to be repositioned.0 -
Well, I am back. It has been around 6 months or so since I was here last. I recognize some of the people here by name! I went for my ultrasound yesterday at the breast health center and the doctor recommends I have the lump removed since it is growing. Quick history: back in 2011 I had a lump biopsied, results sent to lab. Lab came back with atypical proliferation. Birads 4-5. Results sent out to a prestigious university, came back b9. So the plan was to monitor every 6 months. Well it grew since the biopsy. Now they say it is suspicious with low malignancy and want to rule out phyllodes tumor. I don't fit the criteria for a fibro I am 45 don't they occur more in younger women?
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Hi everyone. So glad I found this discussion board and a place to talk with other women who understand. I was diagnosed with ADH last October after stereotactic biopsy #1. Then underwent excisional biopsy - nothing more was discovered. Had my 6 month mammogram last month, BIRADS 4 and another stereotactic biopsy on the other side of my breast. Very relieved to have this come back B9. Now I am at the crossroads of making a decision with regard to taking exemestane for the next 5 years. My BS is pretty adament that it will reduce my risk of developing cancer by 68%. But when I read the studies and see how FEW women developed breast cancer after 3 years(out of 2300 in both groups, 32 in the placebo group and 11 in the exemestane group) I just don't think it's worth all the potential horrible side effects. I've never taken any medication other than ibuprofen and since I work for a doctor, I see lots of patients my age (51) who begin with one med and then end up with 10 more to counter the side effects of the others. Not a road I want to go down. Is anyone in this group taking exemestane (Evista)? What kind of experiences have you had with it?
When I was initially diagnosed last year with ADH, I researched as much as possible about it and breast cancer, and one thing was clear to me - I needed to make lifestyle changes that would set me up for better immune and cell health. To that end, my diet has changed dramatically - lots of fresh veg, fruit, lean protein, some whole grain cereal. Very little dairy. No bread. No sugar. I'm 100 pounds lighter. I now exercise daily as well. Despite these changes, my BS is pretty insistant on the drug.
Any feedback from this group would sure be appreciated as I try to make this decision. Thanks for being here!
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Patty,
I have the same ADH dx as you. When you say that your second biopsy turned out benign, do mean another dx of ADH, or something less sinister? I also chose to forego Evista or Tamoxifen, but for me, personally, I think a second bout of ADH might cause me to seriously reconsider, since I would have indication that my breasts just have a propensity to grow cell abnormalities. Some doctors are more insistent in pushing than others.
I found an integrative oncologist who has me on lots of supplements . I have no bad side effects . Like you, I have made some significant life style changes in diet and exercise.
Btw, Exemestane is not Evista, it is Aromasin (not sure if this makes a difference to you.). They are different classes of drugs. You could give it a try and see if you do develop bad SE's-- many women tolerate these drugs quite well. If you get a bad reaction, you can always stop. I am considering this strategy myself. And finally, although your dr is saying that taking the meds will give you a 68% risk reduction, you should ask him/her what your estimated relative risk reduction is, since this is the number that really matters. And also, I see you say it is your BS who is pushing this. Do you see an oncologist? This could give you another well informed opinion about your situation.0 -
I take Evista. Did take tamoxifen prior. I used to get a toe cramp at least once a week on tamoxifen that I blamed on running. On Evista now, and that toe cramp is gone. Hot flashes on Evista are less than on tamoxifen, at least for me. I sleep better on Evista also, less interruptive sleep. Hope that helps. I too refused the first time around, then agreed the second time to give it a try. You can always stop the medication if it doesn't agree with you. Good luck to you in your decision making.
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momoschki - you are correct that my exisional biopsy was done in August of 2012. I am on a six month rotation of CE/Mammo and CE/MRI. Since the Mammo was what found the original LCIS - we chose to kick off the rotation with the MRI. I am now trying to just relax with my "5 month ticket" before I go through the next round in August. Maybe that session will give me a "six month ticket" if no biopsies are required!! I'm sending you good thoughts and lots of support for your upcoming MRI!!
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Thanks, ED. Fingers crossed for the "all clear" and a few more months of peace of mind.
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Thanks, momoschki and Graceface for your replies. I KNEW I would confuse the drug names - so much information swimming around in my head right now!
Yes, the drug they are recommending is Aromasin. When I research risk, I come up with relative vs. absolute risk - in this case, risk reduction. I calculate my actual reduction in risk as 4%, rather than that big 68%. And that just doesn't seem worth all the potential problems. Also, as I understand it, the follow up on the trial was only 3 years, so long term effects, such as significant bone loss, aren't yet known. I think it would make sense for me to see an oncologist - they may have a better way of assessing my benefit vs. risk. Will try to make that happen. My last biopsy pathoogy was not ADH, just apocrine changes. However, I know from reading here and elsewhere I could still have many areas of ADH in both breasts that just aren't showing up yet on mammogram.I am uninsured and have thus far had to pay for everything out of pocket, so when I consider every six months having the pleasure of a stereotactic biopsy with mammograms and the possible need for another open excisional biopsy, it just won't be feasable. The stereotactic and pathologist read alone is over $3,000. (And living in AK doesn't afford me many options unless I fly out of state each time...also expensive). Add this to the anxiety of checking for something (that usually turns up) every six months...well, it just seems like bilateral mastectomy is more logical. I read elsewhere in another discussion group that having ADH is living in "no man's land" - you aren't "normal" and you don't have cancer...yet. It's hard to get comfortable in that place, but I'm trying. Thanks again for your support!
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Wow, I just had to comment on the price of your stereo biopsy. Mine was 12,800 bucks here in CT. What a difference in prices regionally!The NorthEast gouges us because we make more money than other states I guess. My insurance company reumbursement for this over 12K procedure was 1980.00...huge difference in price! I think about the unfairness of someone trying to pay out of pocket for this procedure and it pisses me off big time!
PattyDee, if you are highly ER+, one of the very best drugs would be tamoxifen, even if you are post meno. 30 years of data show it to be one of the single most influential factors in prevention of BC and/or recurrence. As much as I am dreading taking these drugs, it is truly found to help keep BC at bay so I will at least try it and see what happens. Not as much data on the AI's but it is prescribed for IDC and other invasive cancers. It is prescribed off label for DCIS which is what I have as it has not yet been approved for this as tamox has.
Hoping you make the best choice for you and what you can personally tolerate in terms of risk.
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