Member of the "6 Month Watchful Waiting Club", Unite!
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I had my MRI on Friday, now I have to wait until next week (the 7th) for my appointment with the results. Pretty much if there are any changes I'll be heading for an excisional biopsy.
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I go to the BS tomorrow to follow up on a lump that I feel but that wasn't seen on either the mammo or the sonogram I had a few weeks ago. This whole thing makes my crazy especially after the year I have had with mammos, stereotactic biopsy, lumpectomy, hysterectomy and just recently an emergency gallbladder removal. I am hoping at this appointment tomorrow that the lump that I feel turns out to be just scar tissue from the lumpectomy. The 6 month follow up always feels like I am waiting for the other shoe to drop.
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Good luck with your appointment Janet. And here's a big hug too!
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Just came back. Good news what I felt is all scar tissue from the various procedures that I have had over the last few months. BS said there is a lot of scar tissue in there so it makes it hard to tell. So now I am back on the 6 month merry-go-round.
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Janet------good news is so nice to hear! Now you can thoroughly enjoy the holidays!
anne
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I am not sure if I'll be on this six month watchful waiting club...December 27th I'll have either a uni or blmx. If I do the blmx there will be no more mammo's. With no breast, no mammo's. I'll lose my natural breast. I don't like the idea of having an implant or something foregin in my body or do I like the idea of no breast. For this reason, I may do the uni to be at least half real
I am seeing an oncologist on Friday...and pre op on Monday...so at least by Monday I should no one way or another.The problem with the six month waiting is the six months comes around so fast. In just a little over six months after my lumpectomy, when I suspected I'm clear of cancer I learn that the right breast is cancerous. It happened so fast. Last year it wasn't there or last Spring and now it is.
I was four months late for the six month appointment. If I had made it on time perhaps it would had been dcis and not idc. If you are doing the watchful waiting don't miss your screening appointments.
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Hello. I am a new member to the club. I just got my excisional biopsy report yesterday. I am concerned about the 6 month wait and watch game. I was given no other options from the surgeon. I will have every 6 month mammograms and physician checks for at least two years. My question is this-Is this normal for what they found and what would you ladies do if you were me? I have been reading here lots of good information and many women were given other options. I am an RN who worked almost 20 years in Oncology and Palliative care.
I have been being watched for a year now for suspicious micro calcification clusters. So I have had lots of mammograms in the last year. Every mammogram required additional ones. My BIRADS on the right was 4 and the left is a 3. I have very dense breasts. Grandmother with ovarian cancer and mother had bone cancer and skin cancer.
This is what they found on the stereotactic (VAC) biopsy prior to the excisional biopsy.
Atypical Lobular Hyperplasia (ALH)
columnar cell change with course microcalcifications
florid duct hyperplasia
papillary apocrine metaplasia
The excisional biopsy results are this-
LCIS-tumor size 0.3cm
ALH
ADH-atypical ductal hyperplasia
proliferative fibrocystic changes with focally florid intraductal hyperplasia, stromal fibrosis, duct ectasia and apocrine metaplasia
dystrophic calcification associated with fibrocystic change-NO DCIS or invasive carcinoma
So I am LCIS-Stage 0 Grade 2 at this point. I don't have hormone status yet.
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Elphaba,
Did they suggest Tamoxifen to you at all? I was only diagnosed with ADH and my surgeon said she recommended it to decrease my risk.
Melissa
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No he did not. Nothing. 6 month checks and that was it. After I got home and did more research here I then realized that others (even the NCI) recommend at the very least an estrogen blocker. As you can see I have a very busy breast, hence my concern. I feel a bit like a time bomb.
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Elphaba,
My breast is as busy as yours and while my BS suggested tamoxifen she didn't push it and said the decision was mine and would refer me to an oncologist if I wanted. For now i have chosen not to go down that path. Just had my first mammo and sonogram after my lumpectomy in May and saw my BS today for an exam. I have lots of scar tissue from a FNB, Stereotactic biopsy, 2 wire localizations and the lumpectomy that took a fair amount of tissue from 2 places and that makes it hard to tell what is a lump versus the scar tissue. I am going to continue on the 6 month follow up and exams at least for now. I can always change my mind but for now I am comfortable with my decision.
Janet
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Elphaba,
I was diagnosed with LCIS 8 years ago and my risk is further elevated by family history of bc (mom had ILC). I was given the standard 3 options: 1) close monitoring 2) close monitoring and tamoxifen 3) PBMs. Even with my combined risk, all my docs felt PBMs too drastic. Just monitoring didn't feel enough to me, I wanted to do something proactive to try and prevent an invasive bc in my future, so I chose to go on tamoxifen. but it's a very personal decision and one you have to make for your own situation, hopefully with your doctors help and advice. I took tamox for the full 5 years and now I take evista for further preventative measures, and I tolerate both meds well. If you are not comfortable with your surgeon's recommendations, I would recommend you get a referral to an oncologist (they are the specialists in bc, not the surgeons; as you know, having been an oncology nurse) ----they can go over all the pros and cons of preventative meds for your particular situation. Feel free to PM me if you'd lilke.
Anne
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elpheba---I forgot to mention---I continue with high risk surveillance of alternating mammos and MRIs every 6 months and breast exams on the opposite 6 months. With dense breasts in addition to your LCIS, MRIs would probably be very beneficial for you.
Anne
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I guess I'm now part of this group. Under 30, diagnosed with a probable fibroadenoma, and now having burning/pinching armpit pain. Doc seems to think the lymph nodes aren't a concern but I'm very concerned. I was supposed to follow-up in 6 months but had to go in yesterday for the nodes. They did an ultrasound and singled out a lymph node in each armpit that appeared "normal". Not sure what that even means but I'll return in Feb unless something more goes wrong. I also have a family history in both my mother and maternal granny. Mom had it before age 50 and a very aggressive kind. 19/23 lymph nodes. My heart still sinks when I think about what she went through. I'm scared to go through that also. Haven't been genetically tested because I already know I'm too chicken to have a mastectomy or hysterectomy before 40. Plus I'm willing to bet my insurance doesnt cover it. I don't even think my insurance would cover an MRI which is apparently my next course of action. How have you guys handled the stress over so many years? I'm so glad you don't have cancer but it must be so hard to do this long-term. I can barely handle it and I just started my screening routine. Bless your hearts and I hope maybe it gets easier after a while. Even now, I'm starting to get a little more comfortable with ultrasounds. Haven't had a mammo. I'm guessing my doc is against it because she seems to avoid ordering them. It's especially hard because I really don't have a lot of confidence in my care. I have nearly constant breast pain on both sides near my lumps, now armpit pain and I feel like I'm getting the bare minimum screening. I'm considering switching doctors but I'd feel weird going to a general surgeon instead of a breast surgeon. Sometimes I wonder if even a young person can be diagnosed incorrectly even when a biopsy was done. I just don't feel healthy anymore... ugh.
Good luck to you ladies!!!!
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mvspaulding,awb and JanetM-thanks for your replies. I appreciate your thoughts on all of this. Most of the patients I worked with in the hospital were those that were end stage or post sugical in hospital chemo patients that were too ill for out patient. I want to prevent any invasive cancer if I can. I am not afraid but am worried. Perhaps I can see my PCP and talk with her about the Oncologist referal. Even if I decide not to do anything but wait and see, I will at least have heard all my options.
awb-I am in awe of your 8 years! Good for you.
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Add me too. I had a local recurrence whilst still receiving Herceptin. It has been removed and there is no evidence of spread (yaaaaay). Herceptin has been stopped and no further treatment has been recommended as there is nothing to 'measure'. But they will keep a close eye on me over the coming years. I was initially paniced by the treatment being stopped. It's 'growing' on me now. The constant monitoring is good. Time to nurture me and work on spiritual wellbeing, releasing all dis-ease causing thoughts and behaviours and being grateful for the now.
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Here we go again. Diagnostic mammogram scheduled for Tuesday morning. Ugh. I hate this!
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Good luck on Tuesday morning. I know exactly how you feel.
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It has been a long time since I have been on here. Just trying to catch up with everyone. Shelle3 how was the mammogram? I hope all is well. Had my MRI back in October and the funny thing was I never received a call from the bs to give me the report. I went online in my file to read it. What a crazy way to handle that one, especially with MD Anderson. But hey, all look real good from the MRI. Received the report in the mail. Well, April starts the mammogram, that one I'm more nervous about. 2012, here we go again. Blessings to all. Debbie
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I've was away for a while, too, now I'm back! I've been having all sorts of health problems now, weird stuff. Related to my bad breast, had an examination in December for the icy hot burning, tingling, etc sensations and the doctor told me they were "phantom pains" so nothing to do other than have the 6 month diagnostics this month. So I go back in on Jan 30th for my diagnostics on bad side, annual films on the right. I am not sure what to think about the weird pulling, etc. It's been 4 years since my surgery so a little late for nerve damage and whatever else.The nipple also looks different to me, and the doc mentioned it, as well. But nothing more from her, she seemed to be in a great big hurry to get rid of me. My wonderful doc retired, so now I have to find someone new, sigh. This first lady failed, in my opinion.
So recent woes include right hand pain and a mysterious lump on the top joint of my pointer finger - usually early signs of rhuematoid arthritis....although the bump has a capillary in it, which is strange? These are usually fluid filled cysts but mine seems solid. Also, I have bad pains my left hip, which wakes me up at night. The doc thinks it is bursitis so they will give me a steriod injection and see if it helps. I feel like I'm falling apart, or maybe just getting old, who knows?!
Finally, my vision has changed, requiring new contact lens and glasses prescriptions, after not changing for many years.
Ughh!!! This is not how I wanted to start 2012, at multiple appointments. Well I am just trying to take care of each issue on my list, one by one. I am also trying to drop the 8 pounds I've packed on in the last few years, it's time.
I really do hate that little voice in my head that tells me something more could be wrong. So I've been pushing it away, trying to keep busy and will see what the diagnostics show on the 30th.
Hope you are doing well today!
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Hi everyone...I guess I'm a new member of this club. Found out a few months ago that I have the BRCA2 genetic mutation. I had the genetic testing after my "Invasive Tubular Carcinoma" diagnosis last January. I ended up having two surgeries, the first a lumpectomy and then a second, partial mastectomy to get clear margins. I then had radiation, but no chemo. I have refused Tamoxifen.
Yesterday I had my first 1 year post diagnosis mammogram and am wondering how long it will take to get the results. I'm really concerned that I have a BC in the untreated breast. I guess if there is anything seen in the mammogram they will call me pretty quickly....any experience with this anyone? I am in Canada...
Sorry if I posted in the wrong thread...wasn't sure if I should put it here...or in the "Waiting for results" thread. I will be having alternating MRI's, then mammograms every 6 months due to the BRCA2 designation. I wonder how much better the MRI is in diagnosing BC...I have very dense breasts....
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Six months know it goes fast.Once again i am scared outof mind .I have a cluster of calcs and know its time for my six month followup in feb.I have had this issue since 2007.They are always benign and a birads three which is good.my b-day is feb 8 and i have to go feb 11. Please pray for me that everything will be okay this time too.I dont know why every year i keep getting microcalifications.Is this a bad thing or a precursor for cancer in the future ,so depressed and tired of this.
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It's amazing how long 6 months seems for some things but not for this. Wishing good thoughts.
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Thanks janet.Its like once this nightmare starts it never stops.
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Well my third 6th month follow up was not good. They found micro calcifications near the surgical site. I had a stereographic needle biopsy on Tuesday and am not in the waiting mode. Should hear something by tomorrow. Fingers crossed!
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I applaud you all who can do the 6 month wait.......and then the scanxiety. I cannot. LCIS found and confirmed by second core biopsy of MRI enhancement + >95% breast density. Throw me through the Gail Model excluding the above and I'm a 3.1 when I should be a 1, Tamoxifen is not an option due to clot history. And my baseline anxiety doesn't let me sleep now as it is.
Surgery is 10/1/12. BMX with start of immediate reconstruction.
Best of luck to you all!
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SimplyAudre,
Sorry to hear your news. Yes, stay away from Tamoxifen. I took it for 3 yrs and had a DVT. Didn't know there was a history of some family members who had blood clots, though all the genetic tests were done on me after the DVT and nothing indicated genetic factors. They think it was a side effect of the Tamox.
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Hi ladies, this is marked as one of my favorite topics (guess since I started it!!) so I had a notification that someone posted on the thread...
Sorry you are both going through this crap. I also have clot history in my family on with my Dad and I can already see that I've inherited his varicose veins, et al (thanks, Dad, ughhhh) Spray tan works, LOL!!!
I have put off my 6 month visit for 3 months to finish a major project..hitting "send" tomorrow on it, so no more excuses. I feel oddly at peace with whatever may be going on, if anything, I will not beat myself up. There is no way I could get this project done (it will sort of be my legacy, hard to explain here) with all ofthat $hit hanging over my head, diagnostics, follow ups, Birads 3 and the shrugging shoulders. Whatever - it is what it is, and I'll get back to it soon, I guess. I'll be back to check on both of you. Hug!
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All - thanks for good wishes. I am very happy to report that very late in the afternoon I finally got the call that all is OK. Benign is a wonderful word in the BC language!
Time to move on with life again! 0 -
Yay, that is great news!! What a relief!
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I do high risk surveillance for LCIS, and generally I don't even think about it much at all, but seeing this post reminded me I have a mammo on Thursday! Wish me luck! (to not be worried about it ahead of time, is a good thing for me and shows how far I come)
anne
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