Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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I have been in the club for a year now. Mammograms, ultrasounds, MRIs, biopsies, ductograms, all benign but always Bi-Rads 4 and suspicious and stressful. My last stereostatic needle biopsy the wound grew to the size of a dime and was necrotic and had to be dug out! So gross! Now 2 months later the wound is just healing but I have black nipple discharge. Oy vey!! Thanks for this topic!
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Hi to Julie, Alicki and Neo! Welcome to the 6 month club. Sigh. I've been a member since 2004 - went to yearlies once, then back to 6 months. In a way it's good to keep an eye on things, but can wreak psychological hell. Usually, I have to go back for more scans, then a biopsy or more looks, then sent away and told it was just nothing. By then, I am about 2 months out from my next 6 month check. Crazy stuff. Anyhow, we totally understand!
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hello,
Yes psychology hell
Thanks. Has anyone had a well differented lymph node of 9mm. To come back in 3 months for checking. It was staged as b9. I also have seroma left over from breast reduction which is normal.
Not going to wait three months, will ask 2nd opinion. Been through hell with BC scares recently
And have found a B surgeon in England will to do masecto my if I ever get too fed up of all this.
Anyways
Alicki
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hello,
Thanks. Has anyone had a well differented lymph node of 9mm. To come back in 3 months for checking. It was staged as b9. I also have seroma left over from breast reduction which is normal.
Not going to wait three months, will ask 2nd opinion. Been through hell with BC scares recently
And have found a B surgeon in England will to do masecto my if I ever get too fed up of all this.
Anyways
Alicki
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Yes, psychological hell for sure. I have only been on the 6 month roller coaster for 3 years, but sometimes I just can't imagine a lifetime of this. It feels like I am living my life in 6 month increments and when the scheduled appts come just before or after an important event (vacation, for instance), I find it's hard not to be distracted and anxious.
On the one hand, I would be delighted to be put back on a yearly rotation; On the other, I would be worried that something could be potentially passed over. I wish I could say that after 3 years, I have gotten better at dealing with all this, but I'm not so sure.
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I feel the same way.
I went to the University of Michigan this week for a second opinion and find myself even more confused. First of all, the MO accepted me into her clinic, even though I do not have cancer, which I am thrilled about. She usually doesn't see risk patients, they go to another area. Here is the thing though, she wants me to switch to there with the MRI/Mam and ultrasounds that I have been doing, alternating every 6 months. BUT, she wants me to do all 3, just once a year. Is that strange?
On one hand, I am thinking great, I only need to stress once a year, not twice. Then I think, whooa, a lot can happen in a year that I will not know about.
Tough decision.
Cinvee
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Cinvee, perhaps you could continue your present screening regimen at your current facility while seeing the new onc? I have done something similar-- screenings and BS at one hospital, onc at another. No one seems to have any objection to this arrangement so long as I make sure to have the appropriate reports sent from one to the other. Granted, it would be easier if they were both at the same facility, but I wanted to stay with my BS and screenings at hospital #1, and really wanted to be followed by onc who was at hospital #2.
I totally understand your leeriness at only being screened once a year. This is not the usual high risk protocol.
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Hi, ladies! Back again seeking your opinion, please. As you recall, I was freaking out with all the fibrocystic changes I was having, on these dense breast of mine. Well, all the new palpable lumps were requiring a diagnostic mammo, followed by ultrasounds every 6 months for the past 2 years. This last large palpable lump, my breast surgeon decided he wanted to do a MRI instead of a aspiration, to see what might be lurking behind all these cyst (over 15), so off I went for my MRI. To our surprise, a lesion with multiple focal points was found and no where near a cyst. Report stated they highly recommended a follow up MRI in 6 months at a specialty facility. This was in Oct. 2013 ... skip to end of November and I developed a large swollen node under my armpit, not far away from my lesion with multiple foci.
I still have the swollen node and breast pain, leading me to think I have a infection. Is it possible for a cyst to get infected? Also, in laymen's terms, what is a lesion with multiple foci? I was told the plan should be to see if it remains stable or grows. If it grows, it needs to come out- now.
I've decided it's coming out regardless. I'll be followed this day forward for my multilobulated fibroadenoma, lesion with multiple focal points, many cyst- one benign but with suspicious characteristics, lump under auxiliary and dense breast.
Your answers to my two questions would be greatly appreciated.
Thank you!
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Hello domestic woman,
Why wait six months that are nearly up anyway? I also have fibrocystic breasts with aprocine metaplasia and hyperplasia with atypia, (seriously thinking of mx) and fibroadeomas too
I'm having a hard time getting seen to properly here in Switzerland (because the female population is small in comparison to the UK) and am hopping over to the UK to get the best treatment possible.
In your case, I would recommend that you ask your doc was the lesion with foci is or a well-reputated oncologist. Are you lumps under arm fatty lumps? If so, this can happen with fibrocystic breast as the best pathologist I ever had told me. My breasts are fatty so I don't have the dense issue, although it took a breast reduction to find out I had fibrocystic mastosis. Remember imaging can't tell you everything.
Let us know what you decide.
Alicki
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Mixed feelings here. I have been on a 6 month routine since 10/11. Every 6 months the stress creeps back with the anticipation of more tests. I have been doing Mamms and US every 6 months until 10/13. At my last visit, I had a Mammo., supplemental views (always done), and bilateral US (always results in at least 50 different findings including simple, complex, complicated, septated, debris filled cycts). Always a long appointment. When I requested my report from the radiology department it said recommended follow up of 1 year. Yipee, right?
Here is my concern: My sister is on the same schedule as me and has a lot more going on with recent ADH, ALH, and FEA diagnosis bilateral for all. She has been put on Tamoxifen, but was unsuccessfully able to keep taking it. While I am happy that all I have dealt with is 2 BX (Fibroadenomas), I am unsure how I feel about all the other B9 findings I have. Here are some I can quickly find in previous reports: Apocrine Metaplasia, Usual Ductal Hyperplasia, Sclerosing Adenosis, Extremely Dense (report says very little Adipose tissue), Residual Punctate Microcalcifications, Diffusely Prominent Ductal Pattern, Simple cysts, Complicated debris filled cysts, Complex cysts, Septated/Clustered cysts, and several Fibroadenomas. I know all of these are B9 findings. The only BX I have had was bilateral Stereo Core with Fibroadenomas diagnosis.
I am now weeks from my usual 6 month survellaince. Yet, this time I am not scheduled until 11/14. I have not had an MRI since 10/11. I have never had a cyst aspirated, I have too many. My last report from Radiologist states most of my cyts in one area are complicated and/or clustered, and stated significant increase in number of findings and are obscured by dense tissue mammographically. I am considering asking for an MRI next month. Do you think I am over-reacting? Or should I just wait until November for another Mammo/US which are so hard to read for Radiologist since density and issues severely limit usefulness of those tests? Sorry this was so long, just thinking out loud.
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Another MRI sounds like a good idea. Just bear in mind that MRI's can have lots of false positives, leading, potentially, to biopsies. Biopsies lead to scar tissue, which leads to even greater difficulty interpreting imaging. Do you have a family history of breast cancer (not only ALH/ADH in a sibling)? If you are at high risk, and I'm not sure if "busy" breasts, alone, are a high risk condition, you might want to find a breast cancer high-risk program to follow you. Then they will let you know if the 6 month or 1 year follow-up makes sense for you.
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Well, unfortunately I am back on here. I had an aspiration biopsy done 6 months ago and my follow-up appointment was this week. My breast surgeon said I am just "lumpy" and now that I have had ADH and more than a few biopsies I am considered higher risk. Somewhere around 23-25%. She said the guidelines recommend anything over 20%, you get an MRI. I have never had one done through all this, I have only had the mammos, US, and excisional and aspirational biopsies. I really don't want to get an MRI for a couple reasons. I know that 30% produce false positives and I just have a feeling with my pesky breasts that I would be one to get a call back. Then there would be more tests and more costs. And that is the second reason, is the cost. My insurance plan is high deduct and I am sure that none of the cost of the MRI would be paid. Does anyone know approximately how much they are? They were supposed to call and schedule me Thurs or Fri of this week but I didn't hear from them. I am considering just putting it off or not having it at all. I don't know.....
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mvspaulding--
I, too, have a dx of ADH and a risk factor very similar to yours (my doctors have estimated between 20-25%.). The rotation my BS has me on has me getting an MRI once every 2 years and it was covered by my insurance. The high false negative rate is stressful for sure-- before my MRI last year I was a total nervous wreck, but it came back clear. I was worried about scar tissue (I've had a needle biopsy, an excisional biopsy, and a bilateral reduction), but I was assured that the MRI is sensitive enough to distinguish between the 2, and that radiologists can tell the difference as well. I do hate lying in that clanking tube for 1/2 an hour though!
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thanks for your reply momoschki, sounds like we have very similar circumstances. I'm sure that my insurance will cover the MRI however since my deductible isn't met the cost will probably fall back on me and I'm just trying to decide if I necessarily have to have it. I guess it will be peace if mind if it comes back fine but if it doesn't then there will be more tests and worry. I know many women have it way worse so I'm not complaining just wish I could have normal breasts ha.
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I find it ironic that ADH warrants MRI follow-up but (at least in my case) DCIS doesn't. Go figure. I never had any MRI's during the 17 years I had "only" ADH/ALH. My surgeon (at the time) said it wasn't likely to be covered, and there would be false positives. I've had three MRI's now, since the DCIS diagnosis (with a false positive on the other breast), but will not be having them from now on, according to my surgeon's protocol. I actually think the risk is higher for ADH patients than DCIS patients, as we've already had the "event" and have been treated, although the other breast has a somewhat increased risk (with prior DCIS diagnosis and family history). Interestingly, the 3-D (tomosynthesis) mammos might be just as good or better, now, than the MRI's.
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Hello,
Am information about the 3D mammograms would be great. I have to do one in May. Like someone else, I have aprocine metaplasia, normal ductal hyperplasia, and cysts and fibrous tissue and adenosis (not but scelosing).
I am scheduled for MRI at the end of this year (I will ask for one, they are quite easy to get where I live and are covered by private insurance, Switzerland) but if 3D mammograms do the trick, well this would be great news.
Anyone had any experience of them?
THanks,
Alicki
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momoschiki,
That's for the news on radiologists being able to tell difference on MRI between scar tissue and other stuff. THis was one of my concerns.
Best
Alicki
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ballet, just curious: with a prior dx of DCIS in one breast, what is the estimated risk in the other breast for a new BC (DCIS or invasive)? Did your dr discontinue the MRI's because of the high probability of false positives, or because after a certain number of years out from the DCIS dx, they were deemed unnecessary?
As far as 3D mammos are concerned, I did a little investigation on this and apparently they are not officially approved to replace regular digital mammos at this point-- they are only approved as an adjunct screening tool in addition to the usual digital mammos. Where I am, in NYC, I know if just 3 hospitals that have the machines; sadly, the one where I am being followed isn't one if them, although it is a NCBI approved facility. Has anyone here had any personal experience with the 3D mammos?
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Hi Momoschki,
I was never recommended for MRI as a routine follow-up screening by my surgical oncologist. The only reason I had any MRI's post diagnosis, was that the original hospital found a nodule in the non-treated breast after the DCIS was diagnosed in the other breast by surgical excisional biopsy (aka lumpectomy). It was given a BIRADS4, and the second hospital (MSKCC) repeated the MRI and downgraded it to BIRADS3. Because of that, I was given a follow-up MRI six months after the MRI done at that hospital (so three in total). Now its a BIRADS2, so I'm finished with MRI's.
I am followed at MSKCC, so hopefully they know what they are doing. I never really got a full explanation as to why MRI screenings would not be routinely done. It wasn't because it had anything to do with how many years out post diagnosis. Perhaps it had to do with the false positives.
They also do not do the 3D tomosynthesis mammos. Are they (MSKCC) one of the three hospitals that have them? Just curious, because I don't seem to be getting them. My regular follow-up is one year (not six months) for mammos, and I asked for sonos due to extremely dense breasts, so I am getting those. I had an interval mammo on the non treated breast, only, because I ended up having a biopsy of that breast after the one year follow-up mammos of both breasts. Even so, when I went for the unilateral mammo the tech wondered why I was there, but they did it anyway. So, if all is well, I will be followed once per year with mammo and sono, only, and no MRI.
Frankly, I am ambivalent about the whole screening process. I've had so many biopsies, some good some bad, and too much screening increases the potential for false positives and more biopsies. My one breast has had six surgeries, and it has been described as extremely architecturally distorted (on sono) at this point. I do not want to rush to biopsies unless absolutely necessary.
About the risk to the contralateral (non-treated) breast, I believe that the "average" risk for anyone diagnosed in the other breast (dcis or invasive) is 1 percent per year. The risk is obviously much, much higher for those who are BRCA positive. The risk for those who have never been diagnosed in the other breast is 1/2 percent per year (so after diagnosis, your risk of occurrence in the other breast is double the risk of those never diagnosed). I've been told this by surgeons, and I believe that our resident expert, Beesie, would concur. Again, this is "average" risk. If you had atypia diagnosed in that breast, I'm sure the risk would be higher. So, I guess if you take Tamoxifen or an Aromatase Inhibitor, the risk to the non-treated breast decreases by about 50 percent (bringing it back, in theory, to the range of those who were never diagnosed).
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hello momo,
Im going for one hère in may and will report back. Few hospitals or clinics have them but it just so happens that my breast surgeon operates in a clinic where they do. Not sure what to expect !
Best
Alicki
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Alicki,
Looking forward to hearing your report re the Tomosynthesis. I believe the 3 NYC hospitals that currently do them are MSK, Sinai, and Cornell-- but I am being followed at NYU.
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Hello,
Switzerland is very high tech. They invest more in machines that in humans, so yes, we , now I hope we have the guys who can read it. Seriously!
I am under surveillance in three different places: in one place, I dont like the oncologist-breast expert, but she's the best at Breast exams, never seen anyone like that, if there's something to feel, she'll feel it so I go there even if she HATES me because I'm so proactive
At another place, the breast surgeon is an expert at dealing with cancer and at Ultrasounds and should anything ever happen to me, I know he'll stand by my side and he knows all the latest stuff BUT he really sucks at breast exams and relies on his ultrasound for answers. However, they have the 3d machine at their unit.
THen there's England, where I continue to see one of the best Breast surgeons and plastic surgeons once a year because he was the only one who put me on the right path when my breasts went crazy and I've had a breast reduction so he can answer any questions I can't get out of my PS here. So I jump on a plane, grab some swiss chocolates in the process, go there, see him, give the nurses some chocolates, see the radiologist (one of the top in Europe). I know that if something has to be done (i.e. biopsy), I'll have the reply in 24-48 hours. (it's two weeks here, which is why I've ended up so anxious after waiting for the results for four biopsies....)
I know I should tidy my care up a little and have just one person. But I have read so many times on these boards that people had things in their breasts for years, always seen by the same radiologist, doc, and told not to worry, and then a dragon leaped out of a cave.
Am I anxious, YES, but I'm also trying to be proactive about my care. That doesn't mean I won't get the bad C word, but it means that I'm trying to limit the damage.
Any pieces of advice for me are most welcome. Please just don't be offensive with little old anxious me.
Best
Alicki
PS: enough about me now.
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Thanks for the info Momoschki. I've got my annual bilateral mammo and sono in June at MSK. I'll ask about the tomosynthesis. Perhaps it's as you say, only used adjunctively, when a specific question arises.
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My facility has now added 3D mammos to the screenings for any patients who have previously had breast cancer. So I had both 2D and 3D mammos done at my last screening. The process is the same for both, you just have to stay in the machine for about 4 seconds longer when the 3D mammo is being done, as the section of the machine on top moves to capture the different 3D views.
I suspect that now that I'm getting the 3D mammos, my annual MRIs (I alternated every six months between a mammo and an MRI) won't be considered necessary any more. My doctor just sent in the requisition for the MRI so we'll see if it's approved or not. (FYI, the approval comes from the radiologist at the screening facility, who evaluates each MRI requisition before the MRI gets scheduled; I'm in Canada so I don't have to deal with insurance approvals - it's the radiologist's decision.) I'm not sure how I will feel if the MRI isn't approved. On the one hand, I liked being screened every 6 months, and I liked that I was checked out using two different screening modalities. I got a sense of security, of being really well checked out, from that. So I will be a bit concerned if that goes away. On the other hand, I always worried that the MRI would kick out a false positive, and in fact last year it did - not in my breast but an 'incidental finding' of a lesion on my spine that was possibly mets. That's a scare that I really don't need to go through again, so from that standpoint, I'll be happy to skip the MRIs. If the MRI isn't approved, I'll just remind myself that the recent studies seem to suggest that the combination of 2D mammo and 3D is as effective as adding an MRI to a mammo.
momoschki and ballet, with regard to risk in the other breast, what I was told by my oncologist is that the risk approximately doubles vs. the risk level of the average woman your same age. As an example, an average 45 year old who has not had BC has approx. a 0.15% chance to develop breast cancer during the year that she is 45. So this means that the annual risk for someone who's 45 and who has already had BC (DCIS or IDC) would be closer to a 0.3%. Annual risk goes up as we age; the average 55 year old has a 0.24% annual risk to be diagnosed with breast cancer. So this would put a 55 year old with a history of breast cancer at an annual risk of 0.48%. And for an average 65 year old, the annual risk would be 0.36% annual risk, whereas a 65 year old who's had BC will have an annual risk of 0.72%.
I have read some reports that put the risk higher than this - some doctors and articles suggest that you add 0.5% or 1% risk on top of whatever the annual risk is for the average woman your age. But I've also seen articles and studies that suggest that the risk might be lower than what I was told, so I'm happy to stick with the numbers that I got - I figure that they fall somewhere in the middle of the estimates.
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I have had 3-D mammo's twice now. The first one found my BC! I am thrilled that Yale where I am having all of my treatment and where all of my doctors are located are using it. It is very accurate they tell me. They do both the 2D and the 3D for some reason but not sure why. They did tell me my BC also showed up on the 2D as well, just not as clearly and it might have been rated a 3 instead of a birads 4 so I am glad they used it. I have never had an MRI or ultrasound, even when I had dense breasts and CT is one of the states that have the law that if your breasts are dense you have the right to ultrasound. My breasts have fallen out of the category(just barely) the past two mammos so no need now. Age has taken the density out for me at least. As for recurrence in the other girl, I am just keeping fingers crossed and doing what I can on my end. No use waiting for that shoe to drop. If it is gonna, it will. Hopefully I am DONE with BC!
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Dear April,
THis is great news, I'm nearly looking forward to my upcoming mammogram (3d) in May
Cheers,
Alicki
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Hi all,
It seems that this may be a club for me. I'm 35, BRCA2+ and currently doing surveillance. I'm 3 months out from my next scan. Back in January we added MRI to the screening mix and although I did receive the standard "nothing to worry about" form letter, there was a new finding aside from the usual benign lumps and bumps. The MRI identified "unilateral subQ edema of left breast, etiology of which is uncertain".
Any experience with this? I'm staying off 'Dr.Google' but did browse the medical library in the hospital where I work--none of the differential diagnosis' were very pleasant. I'm curious if any of you have had this finding as a precursor to something more concerning? Or if it's simply a fluke due to the sensitivity of MRI. I'm sure it probably boils down to BRCA-anxiety......
Thanks in advance.
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It seems I killed the thread
. Anyway, just wanted to update this for the next person who comes looking for answers to a similar question. Apparently breast edema can be a common finding on MRI when there's been a previous surgical biopsy. Even 13 years later. So it's all good and nothing to worry about.0 -
Hi Ellie,
Sorry I have no answers or advice on that, but wanted to help you revive the thread.
I have my 6 month next Wednesday. I am have switched to a university cancer center and they have ordered MRI, mamm and ultrasound next week. I have been more nervous than ever before for this 6 month follow up. Not sure why, but the MRI dept just called with the usual prep questions and I am SO STRESSED I cried when I hung up the phone.
I wish it got easier with each 6 months, but it doesn't. I feel like, well, I have been ok for 1.5 years, my luck will most certainly run out this time. I hate this.0 -
Cinvee,
Unfortunately, I know exactly how you feel. I have been doing the 6 month thing for 3 years now and I wish I could say it gets easier, but sadly for me that hasn't been the case. I feel like I live in 6month intervals. Sometimes it feels to me too that my luck will run out and it's just a matter of time. I'm having an US a week from Monday and already revved up :-(
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