Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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Sugatmag how did it go? Was it with an MRI or sono? You have the results? It was very incompetent from them to just let it slip by, even if they called you they should make sure you are following up in a situation like this.
Nicolasue i'd say it's not that terrible if you were to get another Mamo 5mos out. I would worry more if you would let a good chance go by. This is my lay opinion.
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My SIL is a millionaire b/c of a screw up--her husband died-heart. But the point of the case was the same as yours-----------they screwed up on notification
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I'll join the high-anxiety waiting club. I am 48, have very dense breasts and have been getting mammograms for about the last 15 years, but recently had my first ultrasound. I started mammograms early because I had nipple discharge/bleeding which turned out to be ductal papillomas (both breasts). I had a fair amount of testing of various kinds back then including MRI, ductal lavage and they were always testing the discharge for signs of abnormal cells - but I did not have any surgery. Eventually things seemed to quiet down and my breast specialist moved offices, and I went back to just seeing my gyn once a year and having the mammo annually. So now, I finally get a letter that says it is recommended to have ultrasound because of dense breasts. I talk to my gyn about it at my annual appointment and she made it sound like it was my choice but a good idea. I had the US and it showed several complicated cysts and/or nodules, and was rated BIRADS 3. They recommended followup in 3 months. That panicked me a bit and my gyn said I could see the breast specialist right away if it would make me feel better. I chose that (although right away was still a month of waiting anxiously) and saw the same specialist I had seen before.
The upshot is that she was almost totally unconcerned about the US results and said she would recommend repeating both mammo and US in 6 months and return to see her then. But she did spend some time talking to me about the rather extensive cancer history in my family - none of which is breast cancer that I know of, but out of 3 sisters, one had ovarian cancer, one uterine cancer, and my youngest sister died 2 years ago of an aggressive sarcoma. The list of cancers in my family is pretty shocking when you write it all out.
She told me I could consider genetic testing, but that it would be more valuable particularly if my sister with a history of ovarian cancer was tested first. I brought it up to my sister and she has absolutely no interest in being tested and thinks I'm being extreme and unnecessarily adding to my anxiety to even consider it. So I'm in limbo thinking about whether to pursue that or not. I didn't realize how many different genetic mutations they test for and that there are possible links among many different kinds of cancer - not just breast and ovarian, but histories of prostate cancer (dad) and melanoma (uncle) for instance can also be related. I *think* it might help me to know if there is something that puts me at higher risk but maybe it's better to just keep doing my best to take care of my health and let it go.
Oh so long! I just wanted to get it out I guess. Like many of you here, I'm just worried. Worried that the ductal papilloma should have been surgically removed many years ago, worried that the complicated cysts/nodules are really cancer and should be biopsied, worried that my turn to have cancer is inevitable, worried that I worry too much
Hugs to you all in your watching and waiting rooms too.
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Triscuit I am shaking while reading your post. This is Great incompetence, lack of caring from the doctors that are suppose to be taking care of you. I know a lot about these things. First, sorry BUT YOU ARE A HIGH RISK!! it doesn't matter how you cut it. Just having on close fam member (sister, mom or father) with ANY cancer would put you in a high risk grade. Ovarian, uterine you kidding!! of course that is a relation to breasts. Hormones in all..... and so on. I could go on as the day is long. And dad with Prostate does not make situation less. Sister died from cancer? First so sorry it's just really hard to lose a sister. But really?? They are not alarmed and counseling you to best care?? You know why? It's not their lives. Now, I AM NOT saying you have to panic. But you do have to be vigilant. I don't know where in the country you are. But you need people that care, in your situation I'd say every 3 mos. check up perfectly good idea. Cysts come in different shapes and form, sometimes because of your history would they do a biopsy on one to make sure?
And genetic testing is definitely a good idea, yes, in a perfect world your sister would be a better or easier choice, but people have their own fears, she obviously has her demons and we cannot really judge her, it's a tough road, because then she has to face it and do something about it, but you could watch yourself and do what you think is the necessary steps. AND OF COURSE dense breasts require ultrasound. It's the law actually the last few years. With dense breasts they cannot identify easily if something is wrong, because it comes out opaque qhite and lesions tend to hide in the same coloring. Ask for 3D mamos also. There are many places that have that.
PM me if i could help you more, it makes me very mad, when things could be avoided and is overlooked by the medical people that are suppose to help you. You are the consumer you don't have to know everything, but it's important for you to check google and go to known sites so you will know when you are not cared for.
http://breast-cancer.ca/simplecyst/
this is just one of the many good informative sites, read up you will be more informed.
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I am now a member of this club. My mo decided on 6 months alternating mammos and mri's. I really do not deal with stress well but I have to be glad that they are being so thorough about it. I am going to try not to think about it until late July when I have the mammo. I have had a lot on my plate lately and do not have the energy to put into worrying about this. I'm sure as the date approaches I will feel differently! Nice to meet you all.
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Ah, thank you so much momallthetime for your reply. I wanted to cry reading it because everyone else acts like I'm being a hypochondriac for no reason at all. Losing my sister devastated me and I feel like I've lost the ability to hope for the best, which seems to be what everyone wants to do.
I'm not sure what I can do in terms of getting a second opinion or other testing. I don't see the point of doing more regular mammograms as they haven't shown anything when there is clearly stuff going on in there.
I live in upstate NY. I'll PM you. I appreciate your caring reply.
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Triscuit, Color Genomics offers a 30-panel genetic test for $249--you can order online and copy your doc with results. You may be able to get genetic testing thru your insurance, but my understanding is that most require that you actually have a cancer diagnosis to cover the testing. I do have BC, I sought testing after learning of a large amount of BC and ovarian cancer on my dad's side. I wanted the info for my daughter. My insurance would not cover testing without a "first degree" relative (sister, mom) with BC so Color Genomics made sense for me.
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Thanks Gracie22. I'm pretty sure my doctor told me it would be covered by insurance for me with a first degree relative. But I would have to verify that. Thanks for the info!
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Triscuit, well I've learned something new this morning-- I didn't know that having a relative with prostrate cancer increased the risks for having BC.
Now a funny story, that will hopefully make some of you laugh, or at least laugh at the absurdity of the family I grew up in.
I recently discovered my scoliosis (dx'd about 9 or 10) had continued to progress as an adult. I'm now 48. My nuclear family is crazy and I barely have contact with anyone, but I decided I should call my dad and see if I can get some medical history before they die (mom is 83, dad almost 77).
I knew that my dad has an older half-sister with RA and a half-brother who died over 20 years ago. They all shared the same mom, who died of a brain tumor.
I asked my dad what my (half)uncle died of and he replied, "That's not going to affect you. He's not your relative."
Huh??? Mind you, this is a smart man! He has a masters degree and taught at a university! I just ignored it, and pressed on and found out my 'not related uncle'-- LOL-- died of prostate cancer.
Good thing at least, according to my dad, that his genes don't affect me!
Laugh, because it's better than crying or beating my head against a wall. I have a 6 mo f/u US next week and am oddly calm, because, hey-- no relatives have died of cancer!!!
;-)
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Hi everyone
I posted this in the waiting for test results thread but as I am "member of this club" tooI thought I posted to see if anyone had any information to share.
In 2010 I had a lumpectomy and the results where boAtypical ductal and Atypical lobular hyperplasia I have had imaging every 6 months but graduated to yearly 2 years ago. Last week I had my yearly mammogram and ultrasound and where I had the lumpectomy the ultrasound report says "shows some dense fibroglandular tissue with cystic change that has increased" ( as compared with last years scan ) I'm so very confused. I am having a biopsy this Thursday. Does anyone have any idea what the changes mean or has anyone had a similar experience?
Thank you
Angela
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Hi there. Jumping in. Family history of breast cancer. My mom was diagnosed and died at age 52. I have had genetic testing which was all negative. However, I recently had an Ex. Biopsy to remove two papillomas and a radial scar (all microscopic) that were near some new calcifications that had come up since my last mammogram/MRI. No atypia but those alone raise my risk. I am screened yearly and followed by an oncologist. My lifetime risk 3 years ago was 22% but now is somewhere between 40-50% bc of these new findings. Nothing "pre-cancerous" but lots of high risk issues that make my lifetime risk continue to go up. Not sure what to do, but will continue 6m screenings for now. Meeting with an oncologist next month who my surgeon already gave me a heads up, wlll recommend Tamoxifen. Anyone done a mastectomy based on high risk but is not pre-cancerous?
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I'm a newbie to this club. Had a needle biopsy in December 2016 that found ALH but they found no additional with excisional surgical biopsy. My real risk factor is the ALH, my family history isn't a factor. My 6 month mammo came back clear & I go back in 6 months for my annual mammo & to go to the "high risk clinic." I've been given the option of Tamoxifen (I'm 52 and premenopause), which seems would be something I should do. However, I have endometrosis and fibroids in my uterus and from what I'm reading, Tamoxifen will most likely cause all of that to grow. Does anyone else have experience with my particular set of circumstances? I'm very thankful they've not found any cancer, but this is a constant worry like no other I've experienced..,.
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Tammy, there is no hurry to begin prophylactic tamoxifen. More than likely at 52 you are bery close to menopause and could begin taking it then, or take an AI when menopausal
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Melissa--Thanks for your response. My first instict was to wait at least until my next mammogram in 6 months, but then (of course) I started second guessing myself.
I've actually missed my last 2 periods, so I may be heading into menopause as we speak.0 -
Hello, I join everyone here as I have a high risk for breast cancer. Every six months I alternate having an MRI or mammogram done. Last year I had biopsies (six months apart) and both results came back benign. My mother died August 19, 2016 from Stage IV metastatic breast cancer which was diagnosed in December 2015. I had genetic testing done in March 2017 and it all came back negative.
After watching my mother suffer through her journey with breast cancer I will always be hypervigilant of my own monitoring and care.
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Angela I was just checking the boards, what did the biopsy show re: changes.
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Bumping this up.
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Hi all. Hope the watching and waiting is going okay. I've had some new developments since my post back in May. I had a repeat ultrasound and mammo in August. Guess what, new complex cysts appear! The radiologist recommends MRI, breast surgeon disagrees but eventually agrees to biopsy the new sites. I had 3 core needle biopsies and the results showed papillomas at all three sites. Breast surgeon was pleased it's all benign, but I am concerned about the multiple papillomas and having read they should be surgically excised because having multiple is higher risk and a fair percentage get upgraded on excision to either malignant or at least atypical. Then we also find that I am CHEK2 positive, which throws a new wrinkle into it. Breast surgeon still is reluctant to do anything but agrees to MRI now. I just had MRI last week and the results show 3 additional areas in the same breast that did not show on US. Likely to be papillomas again, according to the radiologist. So that's at least 6 papillomas?
I'm meeting with the breast surgeon again on Monday but I know already from her nurse that called me with results that she's not too concerned and will probably just suggest another MRI in 6 months. Meanwhile I tried to get in a study about papillomas at Dana Farber but they are no longer recruiting, although the PI emailed me back and said they would excise in my case. So I am considering that as a possible second opinion.
I'm also waiting for an appointment with a genetic counselor. The whole thing is making my head spin because everything points to benign, so I should just relax, but there are all these increased risks and new findings every time something else is done. At least as my breast surgeon pointed out, given the CHEK2 diagnosis I shouldn't have a problem with insurance covering having imaging done every 6 months.
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Triscuit, has been busy for you. Have my diagnostic mammogram and ultrasound in December. Just had a ultrasound to chest wall and chest X-ray for 3 hard nodules to my chest. I have had the first one checked by 2 oncologists and nurse practitioner. They all say nothing to worry about. Absolutely nothing showed on ultrasound per the technician. Had them done Friday and no one has called me yet. Talk about continued anxiety!! Hope all are well and everyone posts updates!
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Triscuit, there is so much going on with my DD on stage IV, that i've been neglecting coming here. BUT, I just had yesterday MY papiloma excised by BS. My mamos were pretty good, the last 2 times it showed a simple cyst. But this last time there was a new concern on the Mamo. US showed an ocult something. Then needle biopsy showed Papiloma. And with no reservations Radiologist and BS said it should be excised. I did wait a couple of weeks, but yesterday it was D day. or P day. You could check on surgical excision thread, you will see others also excise it.
BS and Radiologist say one of the reasons is that a Papiloma could hide a real cancer. I can't afford to play around, i've seen too many ppl say if only...
This is a site that explains it very easily.
http://breast-cancer.ca/papily/
At least you have to go for a 2nd opinion, get the images and pathology report, assuming you had a biopsy, and run to s/o else. It just does not make sense for them to be so relaxed about it.
I hope you will be reading this.
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Lovinggrouches, i don't know much about nodules at all, but why an US? Maybe an MRI at least, an US may not be the right modality. It's just weird...just saying, again, maybe it's a good idea to ask someone else. Just for security.
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Momallthetime, thanks so much for your note. I'm so sorry that things are so worrisome with your daughter, and on top of that you had to deal with an excisional biopsy of your own. Thanks for sharing that with me though, I don't understand either because excision seems to be standard of care. At this point I'm definitely planning a second opinion, but I'm actually curious to hear what the current surgeon has to say when I meet her on Monday. I know she WILL do surgery if I want her to, but I'd like to hear why she disagrees with what seems like well documented protocol for excising papillomas (especially multiple, especially peripheral, especially with calcifications, etc...). It seems like the only thing that has gotten her attention is the CHEK2 business.
Thinking of you and your daughter.
Lovinggrouches - sorry for your continued anxiety as well. Hope you get some good (and benign) answers in December. Although I might agree with momallthe time that if US didn't show these nodules the first time, is MRI a possibility? I assume these are things you can feel? Did you previously have mammogram(s) and did they show? If you can feel them, can they just biopsy?
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Triscuit sweetie, you are right it just does NOT make sense, i don't wanna be a nag, but look into appointments for other opinion today, she seems a little hmm how shall we say it, out of touch...
Thanks for the good thoughts.
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Thanks for the responses. My last mammogram just showed Sedona was smaller. It was my second post rads mammo. A month later, I started having this weird tingling on my chest right above my cancer breast and I felt tiny hard nodules. MO and RO checked it out and said not to worry. A few weeks ago, I felt 2 more hard nodules and they are in a triangle on my chest well below the clavicle. Ultrasound showed nothing, not even any lymph nodes, which confuses me because that whole area should be full of lymph nodes. I will watch and wait until mammo and whole Breast ultrasound in December and may ask for CT. Radiologist suggested this is Dr thinks it’s clinically warranted. Guess the worrying never ends!
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I'm so relieved to have found this topic! I learned that I was BRCA2 Positive in Jan 2016, and chose to do the "high risk surveillance" route. My cousin had a diagnosis of breast cancer, and underwent mastectomy and radiation, and is now all clear, and my mom chose a PBM. They both strongly urged me to do the prophylactic mastectomy, but I chose to do only tube and ovaries removal (I'm post-menopausal and my family is complete).
Every six months when I go to have my "medical extravaganza" I nearly pass out with worry the day or two prior, as well as until I get my results back. Have had one call-back for a MRI guided biopsy for a LNME which turned out to be benign. My most recent visit (a few weeks ago) was an "all clear," but I'm so glad to find there's support here for my craziness. Sending love to all of my kindred ladies, and thanks for sharing your stories above, it helps so much!
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Dear Fashionvictim, We are so glad that you reached out to the BCO community and shared your story with our members.We are so glad that your recent results were "all clear" but we hope you will stay connected here as you need. The Mods
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Hi Ladies! It's been sooo long since I started this thread. Life has been crazy, too much to get into here...
Still having the "busy" mammos every year, call backs, biopsies, et al. Heading back in a few weeks for the 3D, excited (but scared, of course) to have an in depth look. Having unexplained pain in my left arm and some weird feelings in my underarm, don't know what that is all about....
So I just saw this BRCA test - https://www.color.com/product/brca-genetic-test
What are your thoughts???? Can this be real - $99? Looks legit, but not sure. Thanks for your input, love and hugs to all of you as we start 2018!
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Welcome to the forum Fashion Victim! I am back, after a long absence. So glad you're here with us <warm hugs>
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Sarah, I answered your other thread, but yes, Color Genomics is legit. Besides the inexpensive "BRCA only" test they also have a multi gene cancer panel, which I had done
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Hi everyone, new member of the 6 month and waiting club. Had my most recent mammo last week and was called back for more images. My final report stated " submerged within dense breast tissue there is a round area of nodular tissue asymmetry measuring 10mm that appears to contain interspersed fat. On spot compression the tissue disperses without mass, distortion or other significant finding" . My Tyrer-Cuzick risk model is 20.6 %. I am also considered high risk due to family history. I am scheduled for the MRI in 6 months. Does that sound too long to wait? I was unable to get an ultrasound as I was told for the first time, in 7 years of mammos, that I have dense breasts and the US would not show the mass. What are your thoughts?
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