Member of the "6 Month Watchful Waiting Club", Unite!
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Hello ladies, I am in the 6 month watchful waiting club, this is my first go round. I have a family history of breast cancer, and cystic breasts. On my annual trip to the breast surgeon, in March(I have my mammograms the same day, and this year we adding screening ultrasounds), I was told my mammogram and CBE were normal but I had some findings, on ultrasound... A probably benign rating, birads three score, for a 1cm fibroadenoma, and a small complicated cyst. I also have a harmatoma in that breast, but the radiologist says it was on an Mri, from 2015 unchanged, and is typical in appearance so she isn't concerned.. What a busy left boob, I have lol..So my fu ultrasound is in August, a month early because I work for the public school system and I can't take days off in September. I think they should add one more, " w" to this watchful waiting....For Worried..:)..Sending positive vibes out for all benign findings and stabilty for all of us.
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I'm new to this group/site but I will say this for everyone that is struggling with the 6 month check ups. I was put in high-risk (35% chance) due to extensive cancer in my family tree and a sibling dx with breast cancer last year. I asked about a preventative double mastectomy but without it being 50% or higher no insurance would touch it. My mammogram in end of February would not get a commitment of "we don't see anything" so I was sent for an ultrasound. Again "Not committing here either". MRI - definitely see something but don't think its anything BUT since you're high risk we will biopsy both sides. Hmmmm our favorite MRI biopsy doc is on vacation so hurry up and wait.....3 weeks later.... Left breast - no cancer - went out and celebrated as that was the one the doctor was concerned about. Right breast - one week later - yup this one's got cancer. Total surprise as it looked like a benign cyst or some other such innocuous thing. ALL THAT SAID - WOW am I lucky! Because we were watching so closely - yes I may have breast cancer but it is Stage 1A - lumpectomy done and now on to radiation but no chemo. I feel really lucky and would not have been in this situation without the 6 month watch (that sucks ultimately but saved me from a long list of possible treatments).
Thought I'd share if it makes those 6 months any easier 😊.
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Catherine - thanks so much for sharing your experience! I have to schedule my MRI here in the next few weeks...fun times!
I'm with a new surgeon this go-around (I really like her!), so I feel less stressed going into another round of testing. Gotta love when she does the exam and comments on how lumpy my breasts are, though lol!
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I am seeing the MO next week to discuss my 6 month watch and wait regiment.
I am 34 and have ADH, dense breast tissue, a distant family history (Grandfather's 3 sisters all had BC in their later years). After surgical biopsy of an area of distortion, my breast surgeon indicated that the pathology report showed ADH and told me about the likely plan of attack, including MRI and Mammograms, annual physical exams by an oncological PA, plus my normal yearly gync exams for a second physical exam. I am very nervous that the annual mammograms will increase my risk of cancer further, despite the small amount of radiation.So anyway, I am more anxious than I have ever been, and am glad to have found this community so I can assuage some of my worries, although it is hard not to let the forums give me even more to worry about.
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Welcome onceabird! Your scenario sounds pretty similar to mine, although I'm a bit older
. I'm due for my annual MRI, and have that this Friday. I will say that the further out I get from all of the events of last year (mammos, u/s, MRI, two biopsies) the less I worry about it. I did switch to a new breast surgeon, as I wanted one who was affiliated with the Northwestern Medicine group. I really like her, and feel very comfortable with her and her PA. They work with a lot of high risk patients, so I feel like I'm in good hands with them.0 -
Thanks for the welcome! I love my team of doctors (ugh, having a team of doctors is not something I would have wished for), they work through the Mount Sinai Cancer Center. I am lucky to be 40 minutes from NYC, so I have a LOT of great cancer care options out there if ADH does ever turn to something more serious and I feel I need more opinions/treatment options.
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hi everyone, not sure I'm happy to be joining this club... was dx with ADH and 'multiple papillomas with hemorrhagic necrosis' yesterday. I'm 34, BS suggested genetic counseling first and possibly tamoxifen. Right now she has me on alternating MRI and mammograms every 6 months. I had a major duct excision last week due to persistent bloody discharge. I'm finding myself struggling to figure out the best course of action. Part of me wants to be relieved and grateful and the other part of me thinks if it had progressed to a carcinoma I'd have a better idea of how to proceed.
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Welcome Galiano and Onceabird! I am sorry you are joining this club but you will find so much support and information here.
Galiano, it is excellent news that your condition is not a carcinoma. You don’t want that, believe me. But it is still worrisome to be at risk. Having regular MRIs will go a long way to monitor changes and head off any problems.
I was diagnosed with ADH and LCIS 20 years ago but no one told me I was at risk and my monitoring was not adequate. They understand much more now about risk factors.
There is more to read here about ADH and papillomas: https://www.breastcancer.org/research-news/risk-assessment-tool-adds-benign-disease
Waiting is hard but such a relief when it turns out well. My good news is that I passed my one year ultrasound yesterday! This was after watching a “thing" they found six months after my cancer treatment. The “thing" Is unchanged and three radiologists now agree it is benign and nothing to worry about. They think it is either a fat deposit or a duct (those seem different to me but hey, I'll take it.)
In time, you will become more comfortable with the risk, as long as you stay on top of it and have a medical team that you trust.
Galiano, do you live on an island? I do
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Thank you for the welcome DearLife - It is excellent news, and quite a relief. I've known so many families tormented by breast cancer and I'm so sorry for what you've gone through. Congratulations on the one year ultrasound! That is excellent news. I'm having trouble understanding what exactly this means. As a scientist I can read the research articles (although I probably shouldn't....) and come to some clinical understanding. But I also know that statistics are only useful in predicting for a population and don't describe individuals. I understand that the difference between a pathologist diagnosing ADH and low grade DCIS is often difficult and I wonder if I should ask for a second opinion or just trust that if my BS thought that would be helpful/necessary she would have suggested it. I do have a lot of confidence in her. I'm grateful that this forum exists and that so many are willing to share their stories and experiences. Right now I'm weighing the cost/benefits of tamoxifen and hoping that the risk assessment will help.
Thank you for your kind words and warm welcome
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Hi Galiano. I believe two pathologists look at the specimen and give separate opinions. Do you have a copy of your report? It should be signed by two people.
It is good that you trust your surgeon. I wonder if you could get a consult with an oncologist, though that may be restricted to patients with confirmed cancer. Don’t hesitate to ask her lots of questions. I kept a running list of questions before every appointment and I wrote down their responses. Some people record the meeting so they can review it later.
I hope you are recovering from your your surgery last week.
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Good morning DearLife
Thank you. The report is definitely only dictated and signed by one pathologist. They found three things
- multiple papillomas, some with hemorrhagic necrosis
- atypical and usual ductal hyperplasia
- fibrocystic changes, surrounding breast tissue
My understanding is that the last is really insignificant and that everyone has this, although I might a little young for it to be pronounced. In the case of the papillomas, multiple ones carry an increased risk as compared to solitary and those associated with hemorrhagic necrosis also carry an increased risk. I don't know if these findings together also enhance the risk compared to either alone. The atypical hyperplasia I know also carries an increased, but not definite, risk. Again I don't know what the risk is with these things all combined. The report mentions one foci of ADH stained with CK5/6 and the other didn't. I also have a family history (grandmother, great grandmother, grandmother's sister, grandmother's nice). My BS offered a consult with an oncologist if I wanted to start tamoxifen. I have so many questions now, I think I'll wait until the risk assessment consultation (I'm sure I'll have more then) and then combine all these questions and speak to her and the oncologist. My BS gave me her email and told me to let her know if I ever had any questions or if I changed my mind about the tamoxifen.
Recovery is going really well
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I finally finished with the genetic consults and risk assessments and I'm officially joining the 6-month club. I'm glad this thread exists to share the journey and compare notes on risk reduction studies. After sending the slides to a second pathologist I ended up with two different opinions (one of ADH based on proliferation pattern and one of UDH based on proliferation extent, the oncologist is going connect with the pathologists to try and arrive at a consensus). While no mutations were detected (a relief) my lifetime risk was assessed at 38% given family history and using the diagnosis of UDH. I believe that using the ADH diagnosis raises lifetime risk to ~48% (both using the Tyrer-Cuzick model). I'm not sure if I'm correct in assuming that it's probably a borderline lesion with some features of both. Either way the recommendation was to follow up with 6-month scans and to reserve tamoxifen for a treatment option if it was ever needed given my age. The screening regime that was recommended was alternating mammograms and MRIs, but I also have extremely dense tissue and an alternative imaging modality was recommended on the initial mammogram. I wondering if there is any benefit to doing the mammograms at this point or if they should be replaced by ultrasound or 6-month MRIs? I know that MRIs tend to have a high false positive rate and perhaps annual MRIs and looking for any baseline relative change in the mammogram is sufficient. The oncologist also advised I should stop all forms of hormonal birth control. I currently use Mirena to control endometriosis. She mentioned that in at-risk women even Mirena will pose an additional risk and I'm really not sure what to do. Any other 6-monthers making decisions about birth control and choosing between imaging modalities?
wishing everyone well!
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I wouldn’t completely replace mammogram with ultrasound because ultrasounds don’t pick up microcalcifications. How was your ADH/UDH seen? Also, the risk calculators are about as accurate as flipping a coin. The calculators put me at something crazy high like 70. Genetics counselor said more like 20-25%.
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thanks MelissaDallas
my ADH/UDH was found during a major duct excision for bloody discharge. It was accompanied with multiple papillomas and hemorrhage -+ necrosis. My risk was calculated by a genetic counselor, she used a couple of different models because the Gail model wasn’t applicable in my situation. And you’re right, her assessment of 38-48% was significantly lower than the basic risk calculators. I agree that I probably don’t want to entirely replace the mammogram but should maybe have an US as well on the mammogram 6 month intervals? 0 -
test
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thanks
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I'm not sure that I belong here...I have mammograms on my right breast every 6 months. The last couple included us. A little over a year ago I had an us guided needle biopsy on 2 places on my right breast. B9
I just got the usual card in the mail... place we think probably looks B9. Let us know if... See you in 6 months. And...you have dense breasts & that increases your risk.
I have no full siblings, 5 half siblings. I'm learning about my father's side. His mother had some cancer when she was 100. I have 2 that have had melanoma, 1 died.
My mother's brother had a radical mastectomy. Some people say the men with prostate cancer ' count'. My maternal grandmother was over 80 when she was diagnosed with ovarian cancer. 1 of my 1/2 brothers had a cyst removed from his chest (@ about 19) He said it was the size of a Reese's Peanut Butter Cup. The big one.
Apparently my Basosquamos CA 'counts'. I missed a telephone call from my new GYN office. It was 3:48 PM. The office closes @4. I am requested to call back about my mammogram and pelvic ultrasound. I attributed my 'cramping' to the fibromyalgia. It has terrible timing. LOL Doctors like to be sure.
I am sweating like never before. My eyelashes were dripping today. But is a side effect of an Rx? I have a bunch of tests coming up, on my brain. We hope to learn what parts work. Brain Trauma stinks. I used to be less flakey.
Thanks for listening.
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Jack-Bear
Glad you are posting, sounds to me like you belong here since you have to do every six month scans. I just saw a new surgeon, who is from an accredited breast center, and wow what a difference! I didn't even have to bring up my desire to have genetic testing, all their new patients are screened after checking in, before their appointment, to see if they qualify for genetic testing. Then during my appointment when it showed I qualified they had a the physicians assistant, who does genetic counseling, come in and talk to me about all the positives and negatives of genetic testing. It was great to have all my questions taken seriously and answered fully.
Also, I'm sorry to hear about the other scans you are having to have done due to brain trauma. I had a mTBI 4 years ago that left me with lasting visual, vestibular and cognitive challenges plus migraines. That alone is hard to deal with but I'm sure having to keep up with the breast screening scans just makes it harder. Hopefully you are able to get some answers about what is going on with your brain soon, sadly we still have a lot to learn about how the brain works.
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Thank you/Mahalo!
I want to trust in the 'You look like you are probably OK' answer from my testing. 'You have dense breasts & that makes it harder' doesn't help. Percentages don't help...... I have a friend that won the Lottery. I know more than 1 person that has been struck by lightening... My skin cancer was Basosquamous. I have the Path Report. I kept looking on-line & couldn't find anything. until I visited the NIH site. NIH had info. I remember the number being .5 - 2% are Basosquamous. The Dermatologist that did the biopsy said, ' Don't worry. Skin cancer doesn't grow that fast'.
Next Thursday is the brain testing. I am looking forward to it. NancyB
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I had my 6 month follow-up with the NP in the high risk Breast Health clinic yesterday. There is a new spot on the left that wasn't showing up on the MRI report from June, so she ordered an ultrasound. Most likely it's a cyst, but she said she'd feel better once I get that checked out.
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Hello everyone! I'm an unfortunate new member of the '6-mos. Watchful Waiting Club.' I just turned 43 two weeks before my screening mammo. I'm married, but we have no children. I'm also very physically active, lean. Only family BC history is my maternal grandmother who was diagnosed with DCIS at age 81. My first breast screening was a diagnostic mammo + US at age 35 in 2012 for a cystic right breast. My second mammo was a regular screening (3D tomo - paid for the upgrade bc of my dense breasts) in 2017 at age 40.5. I was not called back for that. My most recent 3D tomo screening mammo on 12/11 turned into a 3D diagnostic mammo on Christmas Eve morning. I was called by the screening center the day after for new calcifications in that darn right breast. I pretty much called off the holidays this year as I could barely function once receiving the callback. Having to wait two weeks for a diagnostic was absolute torture. 😢
After my diagnostic 3D compression images yesterday, I met with the radiologist to discuss my exam. Thankfully, she was awesome and compassionate. She even made small talk about my Boston Marathon shirt - which helped ease tension a bit. So grateful for that bc I was on the verge of tears when I walked into her office. She noted my dense breasts and pointed out the few spots of calcifications on my exam. Those compression & magnification images are amazing! She said that my calcs look very benign with the way that they are shaped and grouped, but that there is always a chance for early cancer and these calcs are newbies since my previous mammo 2 years prior. There was no associated mass detected. She recommended a 6 mos. diagnostic follow-up, but also said that if in the coming days I found that my health anxiety was getting the best of me, that we could just go in, biopsy now and get it over with. I'm pretty torn about that at this point. I won't make a decision until my radiology report is pushed through to my patient portal and I can discuss further with my GP and maybe even DJMammo on here.
So that's my story. Very happy to have found this message board - so informative and was able to to actually understand what the radiologist was saying yesterday.
Happy Holidays to all those who celebrate!
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RunnerShella - your story sounds so similar to mine! I'm glad you had a chance to meet with the radiologist, and that they went over everything in detail right then.
Good luck with your decision!
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Just got back from my yearly appointment with the high risk nurse. I got "the talk" about exercising 30 minutes each day. She said studies have shown it changes your body at a cellular level in a protective manner. It's so hard to find time. But in terms of priorities, I guess I should make it high.
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well I just got added to this club this week
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I'm also in this "club" and get my next round of diagnostics after a benign biopsy (thank you Lord!) next month. I'm nervous about it but so very thankful the biopsy was benign! It was an entire month of uncontrollable anxiety from December 9th when I got the call back untill January 9th after scheduling appointments and biopsy and getting results. Christmas was so hard to enjoy with family dealing all the worry in my head but somehow made it through. Let me say though, this isn't the first time I've been called back for the same breast (left) it's been about six years but this was the first time I had to have a biopsy and I was literally on the brink of a nervous break down with the not knowing! Ugh! I know others have way worse news than us but I'm seriously considering asking my doctor about a prophylactic mastectomy. My quality of life between these appointments is sometimes unbearable. I can't concentrate, enjoy my family, relax.. I know it sounds drastic but I'm just so done with this rollercoaster.
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It's almost that time again - time for my annual screening MRI. I was hoping my doctor might say I could go back to just mammograms, as the MRI is so incredibly expensive. But if I don't do the MRI, she'd want me to take tamoxifen. I'd like to avoid that, as long as I can.
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Hmm, this is interesting to me, as I also have an ADH dx. Used to get MRIs, but now, due to my concerns about the safety of gadolinium, all doctors I have consulted with at a large nyc academic hospital (breast surgeon, oncologist, and radiologist) have agreed that the risk is greater than the benefit in my case. I’m alternating 3D mammos and ultrasound at 6 month intervals. No more MRIs.0
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well my six months are up. Got my letter a few days ago to schedule my 6 month diagnostic mammo and ultrasound. Haven’t made the call yet. With all this covid stuff going on I’m really not wanting to start these appointments
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Always before my 6 month surveillance scan I get anxious since my diagnosis/excision biopsy of ALH. I had a clinical breast exam in May and asked the breast surgeon --- How long do I have to be on the alternation of mammo/MRI surveillance? She said - until you are 70, I am currently 55. WTH !! Anyone else received this news? I thought it may be 5 years or something.
Then I asked - why can't I get an US and not an MRI? She said - US are not utilized for surveillance and went on to say - US is more of a location tool for when something is actually found in a mammo and or MRI to investigate further. Again, has anyone heard of this? I suppose like anything each Dr has then own standards but I wanted to move to US vice MRI. The gadolinium is worrisome. I always ask for the macrocylic gadolinium which is 'suppose' to be less invasive on the kidneys/brain. Also, I always start a regime of fermented chlorella daily a few weeks out from my MRI and then once the MRI is complete add activated charcoal to the chlorella regime to 'hopefully' help with the removal of the gadolinium from my system. Anyone have any additional tips to prepare?
ALSO, the Dr asked me about tamoxifen again. I decided once diagnosed with ALH not to move forward with tamoxifen - 1 I have a history of DVT blood clots and 2 for me I do not think the benefit is worth the risk of side effects etc. My opinion only. I guess they keep having to ask me but this whole process of surveillance builds anxiety 2 times per year and makes me angry. I know that I should just buck up but wonder if anyone else feels like you wish you could just go back to 1 x a year mammos.
I know I should be grateful and I am...... but still a little annoyed.
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so I go in for my 6 month ultrasound on Tuesday. I have been on the 6 month watch for a few years (and had a year we did every 3 months) history of multiple biopsies. I have very dense “busy breasts” with loads of cysts and fibradenomas. Family history of breast cancer.
I am feeling more anxious this time. I think for multiple reasons.... of course my fingers randomly felt a new lump (but my breasts are so busy it is hard not to feel a lump lol) , my beloved NP is no longer working there so I have appointment with new NP, I lost a good friend/co worker to breast cancer 4 months ago and I am a hospice social worker and sometimes it just feels heavier than other times.
So fingers crossed all is well and I get good results.
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