Member of the "6 Month Watchful Waiting Club", Unite!
Comments
-
Hi Frankie thank you so much for being so sweet and caring. I hope your gyn appt. went well. I'm glad you are doing good on evista, I still haven't started taking tomoxifen. I don't think I can handle any other worries right now (since tomaxifen can cause uterine and liver cancer). Now I have to watch out for lymphodema and my low risk just became higher due to a seroma that has formed by my insicion. I've decided to try to take one day at a time. I have insurance through the affordable care act (Obama Care) so I don't know whats going to happen as I can't afford to pay full price for ins. So all I can do is pray for myself and for all of us. I also go in March for my mammogram I pray all goes well for both of us and everyone else. I hope I still have ins in March.
0 -
I love this forum...first post for me, but I've read a lot here. I'm 42, and was put in the 6 month club after a BIRAD 3 finding after mammo and US, of what is "probably" a cyst. I'm not exactly sure why for "probably" part, but I'm also at increased risk because my mom had premenopausal triple-neg BC when she was my age. I'm going to a Breast Clinic now that is very aggressive in monitoring, and the BS said that even with out the BIRAD finding, he'd want to see me every 6 months.
I'm on the fence on the extensive monitoring, as it does cause me a lot of anxiety, and I realize that it can lead to a lot of false positive suspicious finding, pokes and such.
My question is, does anyone know the statistics on how many women who have the high frequency screening still are dx'd with advanced BC? If that statistic is significantly lower than with typical screening frequency, then I will likely continue. If not....I'm not sure.
0 -
ShawnaB hmm i could fill pages and pages to respond to you. First I must say, i will speak from the heart, from experience, from being very close in many different situations, not just BC, so please take it with warmth what I'm gonna try to give over.
WE ARE very very lucky being in the USA where we have access to these modern wonderful technologies. You are very very lucky to have a caring doctor. IHO i could care less if 7 people had anxiety and 3 were saved. If 9 people had anxiety and ONLY one person was saved. If that one person is me, MOM, sister, neighbor...it's ONE person alive that would not be. Much of this diatribe comes from the Insurance companies trying to inculcate this idea of anxiety and not necessary blah blah so that Insurance could save money. Simple. Fact.
Oncologists, Radiologists Oncologists went crazy when there was a mention no too long where the American Medical Society did not want people to go for mamos every year or not before 50 blah blah. They know the truth, of who comes into their office. There was such a roar about it, that they had to change it back to every year, and starting at the age of 40.
Now, to you. You ave a History. A high degree family History. Any responsible medical person will tell you have it checked out. And yes, 6 month check up is the norm for someone in your situation. One option is you could ask for mamo/sono and 6 mos later mamo/mri. MRI of the breast has turned out extremely helpful in finding or explaining things the mamo did not. It works different than Sono(ultrasound). Mamo is still the gold. First you could see if your place has 3D Mammography then you know you are at a up to date place. Such place should have an MRI also, or at least send you for one. This MRI, you will lie on your stomach, your breast in a cone thingy.
Shawna just close your eyes, and think to yourself, how would you feel if you were not to go because you are too anxious, and find out a year later that something is there and now you need surgery etc... when it's caught early first, sometimes it could be excised just during biopsy. Chances are if it's early it would not have spread.
Did you or your mother have the BRACA test?
The word F E A R has two meanings. Forget Everything And Run OR Face Everything And Rise. You are not alone. And this is a terrific site you could come to in whatever situation you will find yourself.
It's not easy. But you could do it.
0 -
Hi ShawnaB - I don't know anything about statistics/monitoring and finding early BC. Here's my story/experience with 6 month monitoring. I have been monitored every 6 months for almost 2 years for bilateral birads 3 calcifications and a cyst that is "probably" benign. Before the 6 month monitoring began, I also had a biopsy that was benign. I was also tested for endometrial cancer at the same time that my breast issues showed up. I have significant family history including a first cousin who died in her 40's from bc. I have had genetic testing that was all negative. I was told that even with the negative genetic testing, I remain high risk because of family history. I take evista/raloxifene to lower my risk. I go to a Breast Center Imaging Center of Excellence. I was told that it is standard protocol to monitor new findings every 6 months for 2 years. For me, the anxiety has been and continues to be terrible. The 6 month monitoring has changed me. I live my life in 6 month intervals. I see a therapist and I work with the anxiety almost all the time. For me it has not gotten easier with time. Some women on this list feel more secure with the 6 month monitoring. Some handle 6 month monitoring with manageable anxiety. Some of us experience severe anxiety as the monitoring continues. As difficult as the 6 month monitoring is/has been, I am glad that I am doing it. I feel safer doing it. Finding bc early can make a huge difference in treatment and survival. For me it has been worth the anxiety. If you decide to join the 6 month club, you will find lots of support here as you go through the process. Best wishes to you!
Frankie.
0 -
I went back to my BS today for a post-op check and to get my pathology results . I feel good and I am glad she removed the duct . I have ductal hyperplasia and focal duct dilatation . Now I will go back for more genetic testing and the doctor will decide how to treat me going forward .
0 -
HI Ginger! I am glad you're doing and feeling okay. I am still waiting for my 6th month follow up in May although I am not looking forward to it to be honest. Ever since I had this breast cancer scare last year I feel like a different person. I am always aware of the little aches and pains that I feel and will already think something's wrong with me. I feel like cancer is going to ruin my life soon. And I hate this feeling. I dont know if lurking through this forum is helping me or further triggering my anxiety. I wanted to rest from reading here for a while but I just couldn't. I want to read more about other's experiences and I want to learn more about BC. I don't know.
0 -
Hi RNstrong.
I understand completely how you feel. Sometimes it is difficult to concentrate or keep thoughts from getting in the way of your daily routine when you are watching and waiting , but try to think of it this way. Don't worry about any of it until you have to . I told myself this when I was waiting for my results . I really didn't want to "waste" any of my time worrying about something I don't know about until I have to . It is like taking time away from me and my family. Don't "wait" for the other shoe to drop because it might not . Time is going to pass by at the same rate no matter what , why not enjoy every day the best you can anyway , if you spend time worrying it is bad for your body .
I try to use this site to connect with others and share experiences because to me it is valuable to gain knowledge that I wouldn't normally be able to find in research. Plus , we can all help each other be our best advocates too .
0 -
Thanks Ginger. I needed that. I feel like Im a "cyberchondriac" already. I am at the prime of my life right now. Everything is going smooth with work and family life. It is hard to imagine that BC might destroy that soon. My mom died at age 38 with BC, I was motherless by age 6. Her mother (my grandmother) had it at 70+. My Dad's sister (my aunt) died from it too. My mother's sister had been texting me since yesterday coz she found a lump on her left axilla. Now she's worried too. So you see where my anxiety is coming from. Im trying as much as I can to be busy with work and go out with famil during days off. Hopefully, I will be able to brush this feeling away soon. But you ladies have been wonderful. And I thank you for everything I have ;earned through this forum.
0 -
I totally understand where you are coming from . My biological mother passed very early from ovarian cancer , so most of my concentration has been on ovaries not breast , but now things have shifted a bit for me . Also remember they have made so many advancements in breast care , so the best we can all do is stay on top of screenings and care and most importantly listening to our bodies. Keep in touch . None of my issues were picked up on mammo or ultrsound .
Have a great day
0 -
Hi everyone, just wanted to tell you all what I was told at the breast clinic today where I had my mammogram and ultrasound (both fine, thankfully). I had an hour long consultation with my BS who said that she didn't advise me to have any more breast MRIs because the gadolinium (contrast dye) is now considered potentially dangerous as it may stay in brain tissue! I knew it could affect kidneys but I didn't know about the brain. There is quite a lot of info on the internet about it. I was on a six monthly surveillance with alternating MRIs and mammo/US but she suggested clinical exam instead.
The problem for those of us with lobular BC is that MRI is the best tool for seeing it, mammograms often miss it and ultrasounds are better but don't always pick it up. So what a conundrum. Just thought I would post this for anyone who is getting regular MRIs, not to scare you but just to let you know. Have any of your doctors talked about it?
0 -
Rnstrong of course it's understandable, you doing the genetic testing?
Optimitstic sorry but clinical exam is bs, these things like calcifications etc...cannot be picked up on clinical exam, MRI has a different reason and sonogram picks up something else. How about a 2nd opinion?
0 -
momallthetime, I agree with you about clinical exam, although it may have some limited use. The risks of gadolinium are very concerning however.
https://gadoliniumtoxicity.com
Above is link to a website that my BS recommended to me. This isn't some wacky alternative theory, unfortunately it's becoming a real concern in the medical world. My second ILC was completely missed by mammograms and ultrasounds for years, but easily seen on MRI. I've ordered the Color Genomics test and hope this will give me more information about my risks. We need better surveillance tests for breast cancer that are non-toxic. This is really frustrating and worrying.
0 -
Optimistic, it's very worrisome. But damned if you do damned if you don't. I have a young daughter that needs to be checked to due a close fam relative, so how can one let just time take care of it. And I know for a fact that only MRI would pick it up. As it has in the past, after biopsy it showed it was benign. It was not seen on the Mamo of course. It's a big problem. Thanks.
0 -
Optimist, the radiologist who did my callback last week also cautioned against repeated gadolinium administration during MRI (but also lamented that MRI wasn't very helpful without it). This is the first I've heard a radiologist mention it. I guess automated ultrasound is another screening option if I can find it (and get a referral), but not sure what i'm going to do in the meantime. Not due for MRI for a few months so I have a little time to think about it.
0 -
I've been having breast MRIs for years (due to high risk from LCIS and family history of ILC, ); my new oncologist doesn't want me to have MRIs anymore, she said we don't know the long term affects. (She never mentioned the gadolinium contrast dye as the factor, but that's probably what she's concerned about.) fortunately, my breast density is very low (thanks in part to 5 years of tamoxifen), so she feels the 3-D tomosynthesis mammos are sufficient for me now.
Anne
0 -
I saw a breast specialist yesterday. I am no longer in the 6 month club. Mamo ultrasound birads 3 for calcs and mass. But MRI didn't see them or anything. So he said no need for follow up. Come back each year for whole breast ultrasound due to density and that's it. No more mamos or mri's.He said MRI even with moderate BPE trumps other testing so I am clear.
0 -
rosie83 do some homework, from what I know, MRI is fantastic, BUT for calcifications, ultrasounds seems as a more accurate option. What kind of a mass? Did they do a biopsy? Did they do a biopsy on the calcifications? Because also there are different types of masses, and different types of calcifications, so you need to know. Some are b9, some not so much. So just calling attention, this is from a layperson. But at least to be watched every 6 months. And the biopsies are important. If you want I'll give a link to go to. Please go for a 2nd opinion with the CD's.
0 -
momallthetime, Rosie's MRI confirmed the Birads 3 (likely Benign-less than 3% chance of being cancer) and an MRI has a less than 5% false negative rate. What are you proposing she have biopsied? She is seeing a breast specialist and has been for some time and the specialist sounds like he/she has made perfectly reasonable recommendations.0
-
update... This was a new specialist , as old specialist retired and I moved areas. This is a new mass and new calcs. Primary did not agree with new specialist and says to follow radiologists and watch for 6 months unless second opinion specialist wants to do something now. Primary says I have to continue mamos ect.Second opinion specialist is in March.
0 -
Melissa, what I meant, is from experience, they biopsied the calcification. I can only go by my own experiences, what I know. What I know is that calcifications are most sensitive to ultrasound. And rosie83 maybe you could clarify and if you could tell us what type of calcifications they told you it is. This link could be helpful http://www.radiologyassistant.nl/en/p4793bfde0ed53... So depending on the calcifications, and go from there...that's what I meant. Great that you are getting a 2nd opinion.
0 -
reports says grouped punctate or dystrophic
0 -
Hi ladies,
I'm new to the 6 month club. 59 years old family history of breast cancer and I have heterogeneously dense breast tissue. On 2/20/2017 had my yearly mammogram done on 2/21/2017 they called from the hospital saying I need to come in for a diagnostic mammogram on my right breast there was some microcalcifications seen. I went in today and had the procedure done. They took it to radiologist who said he thinks it looks benign. And I could go but needed to come back in 6 months, and they needed to monitor me for the next 18 months. So 6 months x 3. They want to make sure it doesn't change or grow. I also need to mention that they went back through the last 6 mammograms to see if it was present on any of them and it wasn't. My hubby's having some anxiety over the fact that they want to watch it, that there's a chance it could become cancer. Any thoughts on this ladies?
0 -
I should also note that it's a small cluster of calcifications down deep in my right breast and more towards the outside.
0 -
I should also note that it's a small cluster of calcifications down deep in my right breast and more towards the outside.
0 -
Hi all,
My 6-monthly visit is tomorrow 😓 I have been a member of this club for 2 years now with 2 biopsies under my belt and like some of you, I am seriously considering mastectomy because I cannot stand the stress and the worry and the days and weeks being scared and waiting for a biopsy and then results. I have two teenagers and it's all I can do to stay strong for them during those times
My last biopsy was a Birads-4C which turned out benign. We never had any history of breast cancer until my older sister was diagnosed with it last October- she has since undergone a double mastectomy and reconstruction.
Can't help feeling that 3rd time's the "charm" and waiting for the axe to fall. I am glad (if I can use that word) that I am not alone and that I am here with you all in a club we never asked to be part of.
Wishing and praying for good results for all of us!
xoxo,
EIJ
0 -
M1958 - Welcome to our group. I'll share my experience with microcalcifications that are probably benign and 6 month monitoring. At my imaging facility which is a Breast Center of Excellence Imaging Center, I was told that ALL new calcifications are monitored every 6 months for 2 years - even those that are probably benign. It is their protocol. I have googled online and it looks like monitoring calcifications every 6 months for 2 years is the protocol regardless of how the calcs look. I have significant family history of bc. I had my first mammogram at age 62. It showed bilateral microcalcifications (and quite a few of them) that are loosely grouped. I've been told I have "busy breasts" - there is a lot going on. I don't know if busy breasts increases my risk of cancer. I also have a cyst that they are watching. My calcs were rated bi-rads 3 which means they have a 3% chance of being cancer. I had one biopsy done because some of my calcs were starting to form a line which can indicate cancer. My biopsy came back benign - fibrocystic changes only - no atypical cells or adh found. They recommended genetic counseling for me because of my family history. I had the testing done and it all came back negative. Even with negative genetic testing I am still considered high risk because of family history. I am now taking Evista (which is a chemo prevention drug) that can lower risk of bc in post menopausal women. The 6 month testing is very difficult - I see a therapist to help with the anxiety. My radiologists are very helpful and are always available to me between mammograms if/when I have questions. I hope this helps. Let us know how you are doing and if you have any other questions.
Frankie
0 -
Hi ELJ - I'm thinking of you. I share the continuous cyclical anxiety of 6 month testing. Let us know how you are doing and how your appointment went.
Frankie
0 -
Hi everyone its beem a while since ive been here. I had surgery in january for a seollen lymph node. My bs was suppose to take 1 node and took three instead. inctrasing mu chances for lymphedema which i think i already have it mild. A couple of days before my period my breast on the surgery side blew up like a balloon thats always been my small breast due to lumpectomy. i wish i would habe had more information on lymphedema because i probably would have waited and not done the surgery unless absolutely necessary. Im am very upset with my bs for down playing lymphedema as my risk was very low. 70 % of women get this dreaded desease. not 30 % as they tell you. There is no cure and its for life. So the 6 month wait and watch doesnt seem so bad now. I have my mammogram on th 16th of march I've been so upset with everything i haven't had much time to be worried ay this point. I've come to terms with it is what it is. I've been really depressed with everything else thats going on and i have been crying a lot. i know whimpy!!! I hope this passes soon.
Elj good luck i hope all comes out good for you.
To all the other ladies who have been so supporting, I also hope you are all doing well.
sorry just I had to vent. Hugs for all
0 -
Tinker, I understand. That's why I'm on medication, but still feel the anxiety ramp up when I even THINK about my next mammo
0 -
lovinggrouches if you don't mind me asking the nodes you had removed were they snb or alnd? Have you had any problems with lymphedema? what medication do you take? i I think I'm going to have to start taking something.
0
