Member of the "6 Month Watchful Waiting Club", Unite!
Comments
-
Hi. I've been a member of the 6-month club in 2007-2009. I had an asymmetric density in my right breast, 0.9 cm, discovered at the age of 38. I had mammograms and ultrasounds, never an MRI or biopsy. Then I was pronounced clear and just did annual mammograms. I was always doing these at the same place and in the last few years they did not even see the asymmetry. In September 2015, 3D mammo showed a 1.2 cm mass with irregular edges about at the same position where the asymmetric density was. I was called for additional mammogram and sonogram... and pronounced clear!
In December 2015, I tested BRCA2+, got tested on my own initiative because if some family history of ovarian cancer. The genetic counselor tried to talk me out of it. After getting the results, I decided to get observed, got MRI done and cancer (1.4 cm) was discovered in the same spot that was considered benign on the mammogram. I now had a bilateral mastectomy. The genetic testing, MRI and surgery were all done at a different place than my previous mammograms. I am convinced that this previous place missed my cancer. I do not know if it was caused by frequent radiation (I also had chest CTs to follow lung nodules in 2012-2014) or stress, including extreme stress upon hearing about BRCA2+. I do wish I was more anxious in 2009 and insisted on a biopsy. My cancer would have been caught earlier...
In conclusion, it's better to be a member of the 6-month club than have this disease missed by docs...
0 -
Hello this is my first post & from UK so treated under NHS. I belonged to six month club. In 2012 I was diogosed with DCIS & told mastectomy, I was mortified but went along with this originally, but then started to research & chose against advice to opt for watchful waiting & was checked 6 monthly with no change, then told annual checks were now appropriate. I then missed next 2 annual appoinments through illness & a very stressful life with an adult autistic son. Then a few months ago felt a pea like lump in breast, concerned but not worried mamagram booked & had biopsy same day, told their were changes & it was now invasive & also in my lymph nodes & a mysectomy, which this time I accepted & CT scan booked, result was it looks like its gone to liver, so mysectomy cancelled & now awaiting MRI scan & on hormones (Letrozole). I've only been on hormones for 4 days. I don't regret watchful waiting but should have been more watchful, but no point in beating myself up either, I can't change whats done & trying to be positive.
0 -
Thanks trish01254! I agree! I think that following up on any little thing is important. I want to keep on top of this and seem to have a great medical group working with me. They are very kind and supportive. That sure helps. The ache reminds me of what was, and what I need to be watchful of. Have a good day!
0 -
Hi I have been a member of this club since April 2013, when calcifications on diagnostic mammo led to lumpectomy led to ALH diagnosis. Since then I've done alternating MRI, mammo and ultrasound every six months. Last mammo was done in Nov. of 2015 and told to do a follow up on left breast only as they saw calcifications. Needless to say I'm mortified and stressed beyond measure since the last one month. My follow up mammo was scheduled for May 6, but unfortunately the doctor was out sick and is now scheduled for June 6. It's still three weeks away and I am terrified. Not sure how long I can live my life in six month increments. Looking for positive thoughts from this wonderful group of ladies
0 -
I am in a similar boat . I don't blame you a bit. I too feel scared and worried and frankly if itwere not for the high intensity management I have with another terrifying disease ,I would be quite worried with my ADH DX too. My daily struggle with type 1 Diabetes is " beneficial" in that it keeps me from focusing on the bc. A horrible distraction yet a distraction. Hopefully you can find something more positive to distract you for now. You need to live this next three weeks as intensely distracted as possible. Keep us posted . Wishing. You a good outcome
0 -
Thank you Ddw for your kind words. Sorry to hear about your horrible distraction and wish you nothing but the best. I am trying my best to stay distracted but the fact that I'm visiting this forum everyday is proof otherwise. I think I had put this out of my mind for the last three years but this time as the check up time came and went with the appointment getting postponed has given me to dwell more on it along with the fact that the doctor wanted to follow up something (calcifications) that they saw on the left breast in the last mammo is making me extremely nervous. Thank you again for your kind words and I will update for sure on the outcome.
0 -
this is a great place to come to talk about your fears and anxiety. Who else could possibly understand this watchful waiting. But.....you have today and tomorrow next week and week after to appreciate life. Don't get so distracted that you loose out on enjoying all the today's. I trust my medical team and leave the rest to the higher power.
0 -
We are very strong chicks! Remember that. When I get down and scared I remind myself of all that I've been through and how fantastic I'm doing.
I'm giving your virtual pat on the back because you deserve it
0 -
Thank you Trish for the reminder! and thank you Ddw for the pat
0 -
Hi scared and worried - I'm glad you found us. This is a great place to find friends and support when you are in that so very difficult place of waiting. We all know it well. I live my life in 6 month increments too. I'm starting month 3 of another 6 month cycle and already getting anxious. This week my daughter went and talked to my radiologist to ask again why I am being monitored every 6 months for 2 years after a benign biopsy. The radiologist couldn't have been nicer to my daughter. She slowly explained everything to her and showed her all the imaging. She offered to call me personally to go over everything with me, gave my daughter her email address, and said for either one of us to call or email her anytime we have questions or need support. She said she's a doctor and she gets very scared toowhen she has to get her mammogram. She was aware of the anxiety that this creates. I have a good doctor and I hope you do too. I agree with Ddw79 - we are very strong chics, but I do take xanax the week before my appt and it helps a lot. Wishing you a good outcome and I hope you are surrounded by friends as you wait.
Frankie
0 -
Frankie, I so appreciate your encouraging words. You're blessed to have such a thoughtful doctor. Unfortunately my doctor has been very difficult to approach. It's a big hospital and the personal aspect is lost. In fact my appointment was pushed out a month due to the doctor's unavailability which has given me so much time to stress
I I got really anxious yesterday and thought I had to do something to shorten my stressful period so went ahead and moved my mammo to tomorrow. The doctor's appointment is still scheduled for June 6th. I know it might put me in a more stressful situation if the radiologist is not able to reassure me that everything looks good on mammo, but I'm going in tomorrow with my fingers crossed. In the meantime I have a big presentation at work in front of the CEO of the company and a big crowd so trying to keep my focus on getting that done. Need thoughts and prayers from this wonderful group of women. Thank you all for keeping my thoughts positive through this ordeal!0 -
me too on the Xanax Franki
0 -
My apologies to all the wonderful ladies here for blabbering but had to put it out there as this is driving me crazy. So I'm going in for six month follow up on left breast microcalcifications; mammogram today only of left breast and follow up with the doctor not till 6/6
While they're following up left breast only this time where ALH was found on lumpectomy three years ago as a result of microcalcifications on mammo, my concern all these years has been on the right breast which is bigger in size and seems definitely thicker than the left one. There is definitely one area outer upper quadrant which seems thicker and three and a half years ago was core needle biopsied and came back as fibroadenoma with some area of scelrosing adenosis. Since then everytime I've gone to the doctor i've insisted on them checking out that area, have had multiple ultra sounds (I've even lost count) and they keep telling me everything looks ok, yet I keep on worrying about this area. I know the radiologist is not going to do anything today without the doctor's orders on the right breast today, but I plan on insisting to the doctor to get my right breast checked again with some kind of imaging when I go in for my follow up on June 6th. Am I being unreasonable? Is this my hypochondria? What would you do?0 -
I don't think you're being unreasonable or hypochondriacal at all-- you've had some issues in the past and you are just being cautious. Totally reasonable and I would insist on the same. Can you get an MRI? With a dx of ADH, I get one every 2 years and insurance covers it
0 -
Dear scaredandworried - I don't think you are being unreasonable at all. After my cancer scare and ongoing 6 month monitoring, hypervigilance is now my new norm. I know women who pay out of pocket for more frequent screenings and tests if that's what it takes to manage their concerns and anxiety. I wish you the best today and even though your doctor appointment isn't until June, I hope you are given some information today when you have your mammogram. Let us know.
Frankie
0 -
Thank you Momo and Frankie for your kind words. Momo, i've had three MRIs over the last three years but no one has said anything about my right breast and the thickness that I keep feeling. For the first MRI I had paid out of pocket so yes I'm that type who pursues no matter what it takes. I just feel scared at times that I haven't pursued enough on this one since everytime I hear a doctor say it doesn't seem anything I am happy at that moment and take the reassurance back. It's only at times like these that I start self examining it myself and then am scared that may be it is something! Anyways, I've worked myself enough this time that I will bring it up and push for investigation at my doctor's appointment on June 6. I'm heading out to my mammo on the left breast now. It's scheduled three hours from now and God only knows how I'm going to get through these next few hours. Thank you all for your kind words and thoughts! I need all the prayers that I can get
0 -
Dear scared and worried - In Your Pocket. You are not alone.
Frankie
0 -
scaredandworried,
How did it go? Hope your nerves are a little less frayed now that it is over. Fwiw, during extra tense times like scheduled screenings, it's definitely drugs that get me through. Better living through chemistry-- no shame in that. Desperate times call for desperate measures..
0 -
hi Momo and everyone who had responded, I got an all clear on my mammo. Was told that the micro calcification a are unchanged from three years ago. I took a sigh of relief. Now waiting for doctor's appointment on June 6 to pursue my right breast issues. In the meantime I'm going to stay calm for the next three weeks. Thank you to all you wonderful ladies in helping me get through this. Frankie I looked at your message right before I went in to get the mammo and you brought a smile to my face at that moment of panic. Thank you all again for your kind thoughts and wishes. I pray the best for all of you
0 -
scaredandworried - that is great news - thanks for letting us know. I'm glad my message came at the right time for you. I sure do know that panic feeling. Let us know how June 6 goes for you and check in with us whenever you need to.
Frankie
0 -
Hi Frankie, I really want the next two weeks to go by fast as I've worked myself up to another panic now as I keep feeling and prodding my right breast and have found what I think is a pointy little area right above my nipple. I find myself constantly feeling it and wondering if this is a classic lump with not the usual rubbery smooth edges. I've had multiple ultra sounds on the right breast over the last two years but I don't see anyone of them mentioning anything in the area above the nipple. All those ultrasounds were focused on the upper right quadrant and lower left quadrant due to dimpling concerns I kept bringing up to my doctor. All those ultrasounds noted cysts and nothing more. Now I'm wondering if they ever looked at the top of my nipple area (12 o clock) and if they didn't was this thing always there and no one ever saw it? By the way I've had mri's and mammos alternating 6 months and nothing picked up anything in this area. But I'm definitely feeling it. I've definitely scared and worried myself to a whole new level now!!!!
0 -
so here I am waiting for an ultrasound of my right Breast. I was able to request this sooner than my doctor's appointment on June 6. Need prayers and positive thoughts from this wonderful group. You all helped me pull through the mammo last week. Thank you all
0 -
dear scared and worried - I was just getting ready to respond to your earlier post about being panicked waiting until June. I was going to suggest trying to get an earlier appt and you have one already. I know just how you feel. At my last appt I was taking more Xanax in the waiting room. Hang in! I'll be on this thread waiting to hear how you make out. Hugs to you. You can do this
Frankie
0 -
Hi Frankie, thank you so much for your words of support. The ultrasound went ok I guess. I should be happy that they didn't find anything that screamed trouble but at the same time they found a new complex cyst type looking mass at the six o clock location that the radiologist said she wants to watch after a few months. She couldn't give me very good answers. Previously the same type of item was noted in my ultrasound from another location but at 9:00 o clock but this time they didn't see anything there. Rather they noted it at 6:00 o clock. Previous ultrasounds clearly stated nothing at 6:00 o clock. Could a complex cyst have moved within the breast? Is that ever possible
0 -
Dear scaredandworried - thanks for letting us know how it went. I don't know the answer to your question. I have a cyst that is being watched but so far they are not concerned about it. They also tell me I have a lot going on and I'm too scared to ask what else I have besides a cyst and bilateral calcifications. I'm sorry she couldn't give you very good answers. Not getting good answers would create anxiety for me. So the question might be how can you get better answers. Three thoughts come to mind. A second opinion. You could also start a new thread here asking specifically about your situation to see if anyone with similar experience jumps in. You could also go to Johns Hopkins online "Ask an Expert" and email them your question. I've used them quite a few times to get information and possible next steps. They respond quickly. Let me know if you want the link for Hopkins. Hang in and keep us in your loop
Frankie
0 -
I guess I'm new to the club. I'm 43 & I had my first mammo in Nov after finding a spot that looked like an age spot. That same day I had an ultrasound and diagnostic mammogram. The radiologist wanted to do biopsies on a couple areas. Problem is, I have a RSD and fear spread with any injury whether it be accident or a procedure. (He told me the biopsies would be hard to get to due to location.)There are things that can be done to help prevent that, just takes several appointments with different specialists for nerve blocks etc. So, the radiologist ordered an MRI. This showed areas in not only the left breast, but also the right. He then felt we could do the 6 month watch and see. This concerned me. I went to a breast specialist to get another opinion. She agreed. Well, my 6 month was this month. The appointment was scheduled. My nerves were already shot as I had thought of moving the appointment up towards the end of March, beginning of April as something felt different. Medicare, my secondary insurance, approved the MRI. My primary insurance company has somehow, through their peer to peer interview process with my Dr, determined that I don't fit within their criteria for medically necessary on the MRI. Not sure how, as my paternal grandmother had breast cancer and all her siblings. Their daughters have had or tested positive for the gene. Plus all the abnormal imaging done in November.
So, now I'm confused. I've left a message at the breast specialist's office wondering where to go next, 3 days ago. Thinking of just going to another. Then, another part of me doesn't want to know or go through this stress over summer break with my girls.
0 -
I feel
Your pain. I'm
Still
Waiting to schedule US. It's so frustrating. Just not happening. I keep calling and emailing and getting put off for one reason or another . Hate this !
0 -
My 6-month follow-up is in a couple days (I've been on a 6-month schedule for a couple yrs). I'm now being monitored for a new cluster of pleomorphic microcalcs, Birads 4. Although radiologist recommended biopsy, breast surgeon said area was too small and it was better to monitor. In the last 3-4 weeks, I've noticed a lump under my armpit (closer to the breast/pectoral muscle) that is tender upon palpation. In the last few days, the anxiety is starting to build (a close relative of mine is in advanced breast cancer stage that has metastasized to several areas and so, cancer is very much on my mind). If the mammo/US results have not changed from the last testing, I'd still like to request further testing to give more information on this new lump. How do I make the surgeon understand that the anxiety is just too much for me to handle for another 6 month wait without sounding like a hypochondriac?
0 -
WOW I can't believe I only now found this wonderful site. I was not able to read all the posts, I jumped here and there, and everyone here is so incredible.
I would love to hear your opinions. First of, the majority here go to a place that has 3D or 2D mammography?
So the thing is I am representing my daughters. Due to an older (early 30's) sister with stage IV BC, they were told to have a base line Mammo. Innocent enough right? Well, no. By some very crazy coincidence, daughter tested negative for BrCA1/2, they ea showed something on their base line mammo. So One had pleomorphic calcifications with clustered distribution, detected also via MRI/sono then Stereotactic biopsy and came back negative. After a yr of 6 mos intervals, and redoing of scans, MRI still says background enhancement, nut no suspicion, Birads 1 negative. So, first of all what's with this enhancement thing? And, does anyone here have the same experience, the way this private radiologist says it, they are doing One time, Mammo/Sono 6 month later Mammo/MRI, and if caught once, do you really need to do every 6 mos. I love to be aware if something is not right and have all testing available, BUT am concerned of so many Mammos on someone so young, (still in their 20s), what say you?
The other one had Sclerosing Adenosis, also had biopsy, also negative, here she was told that she may need another yr of 6 mos testing, and then just every yr, also in her 20s. First of all, I just reviewed last MRI of a couple of mos ago and it says "moderate background enhancement" limiting the detection of a small cancer??????Really, no one told us anything about it, are they just protecting themselves or is there really something to worry about? Birads Category 2.So nervous, needless to say, they are anxious, with the C word constantly in their so young minds, first just by seeing their sib but also having to deal with this absurdity. So I try my best to keep my ears and eyes open, I am here really for the other one, but saw this thread, and we have to make a decision soon for the next check up.
Also, could I ask you, when a sono is done in the radiologist office, who does it for you? A tech or the doctor Radiologist themselves. Used to be the Doctor Radiologist did it themselves, but they are getting bigger, and the rule is now, that a tech does it, and the doctor just comes for the final read.
TIA, looking forward to your responses.
0 -
hi sunny girl. The timing of your lump discovery is perfect. Your dr should be able to schedule an ultrasound to ease your mind. At least in my experience my Drs have been open to tests to ensure benign findings. Good luck
0
