Topic: Member of the "6 Month Watchful Waiting Club", Unite!

Jun 2, 2011 11:46AM barb3246 wrote:

Unfortunately I have also been a member of the 6 month club for the past 3 years. I am 46, have a strong family history (maternal grandmother, Mother died of BC at 57), as well as a personal history of 6 benign biopsies so far. I go for clinical breast exams every 6 months or so, along with a yearly mammo and MRIs. My biopsies have shown florid hyperplasia, columnar cell changes, papillomas, fibroadenomas, calcifications and other funky stuff. They always mention multiple bilateral enhancements on all of my MRIs. I feel like I am a ticking time bomb waiting to explode. All the stress of these repeated tests and biopsies has definitely taken its toll. Sometimes I wonder if I should just get prophylactic mastectomies and get off this rollercoaster, but I'm not convinced that doing so would really be the end of all of this anyways. I have my next MRI scheduled for this Sunday, and I am really hoping that I don't need another biopsy...... :-(

Jun 3, 2011 09:47AM mdoak wrote:

Ugh, my first MRI is on June 20th, followed by a spot compression to check on my December biopsy site, an ultrasound, and a meeting with my fabulous radiologist to go over all of the results. Including MRI, same day. If any of you are in upstate NY pm me and I'll let you know about this wonderful clinic; I drive two hours to get there and it is well worth it.

 Anyway, eight days ago my right breast (same breast as my biopsy, and same breast that makes me nervous) developed red blotches, sort of like hives, but not raised. There are several of them. It started with a stinging, burning feeling. I looked and my entire breast was red and hot; I wondered if some bug got in my bra and bit me, but I looked carefully, and nothing. Later that night my breast looked normal, but the next morning I had these blotches. My breast is a little warmer than the other, but not much. They haven't changed in a week. Weird, eh? I'm glad I have an appointment on June 20th or else I'd be worrying whether I should call. I'm glad to have that decision taken out of my hands.

 Carpediem -- call. when it's behind you, you can have another few months of feeling better about it all.

Jun 3, 2011 02:45PM mdoak wrote:

shelle, we're practically twins -- mine is June 20th. It feels great to have other people here who understand.

Jun 4, 2011 11:05AM SarahsMom wrote:

Ok, I called and scheduled my appt for July 1st.  Here we go again!

Pat, thank you so much for sharing your story. I haven't had as much poking and probing, but I can truly understand your decision!!  Yes, weeks are lost. This last go round, I had my diagnostics in Dec and it was mid Feb until I got the BIRADS 3 and come back in 6 months. I am going for my appt on July 1st, so we'll see what happens. I am going to slide my Dec appts to Jan so I don't have to worry over the holidays from now on, that sucks.

Best of luck to you!! Your surgeon sounds awesome! 

Jun 4, 2011 04:23PM SarahsMom wrote:

Good Lord - the 3 month club??! Bless your heart. And skin cancer diagnosis, on top of everything else.

I wish my BS was hot, he is anything but! He is retiring soon, so I will look at the pictures in the hallway and pick a new one. Laughing here! Maybe there will be a McDreamy.  

Yay to the adult beverage, we deserve it! As well as laughter and sunshine :-) I like the saying in your posts about worry, good stuff. 

Jun 5, 2011 08:01AM Megadotz wrote:

Hi, not sure you're going to want to hear from me.

 I was on a six month diagnostic mammo/us  schedule  following density for three years (bi-rads 3 probably benign - checking stability)  The next one was a hit, barely stage 2 (micro invasion of 1 node) IDC.  I drew a different radiologist in the practice, who kept saying there was nothing there last time.  

The watchful waiting paid off  for me.  Outside of the density issue, I was considered pretty low risk for BC.  Little family history of any cancer - 1 grandfather and 1 cousin.

One thing that has concerned me in this thread is folks having to wait for  a diagnostic mammo result -- where I go the radiologist reads the scan while you're there and then discusses the findings with you.  It takes longer with biopsies -- but that needs pathology.

I guess what I'm trying to say is that it's frustrating and anxiety-making, but I'm glad I went through with it.  

Hang in there or take  other actions, please don't just ignore it.

Peace.

 Meg

Jun 5, 2011 02:49PM SarahsMom wrote:

Hi Anne, thanks for posting your info and welcome to our thread of watchful waiters!

Megadotz, thank you so much for your post. Was your IDC caught on mammo or ultrasound? 

I am so glad you posted here, it is frustrating going through this process every 6 months but your post shows why it is a "necessary evil."  So glad your cancer was caught so early, that is good news as it sounded really aggresssive. 

Jun 5, 2011 06:22PM Megadotz wrote:

Hi Carpediem,

It showed up on the mammogram and was confirmed on ultrasound.  They had been doing both over the three years.  when the found the IDC on the right side, there were also places of interest on the left side -- that ended up being a cyst and "benign breast tissue with stromal sclerosis" -- the cyst was aspirated with clear yellow fluid.   Thee was a six month followup ultra sound on the left (between chemo and radiation on the right) and it was clear, a mammogram was done to confirm.

 I was lucky, it  had just started to spread -- besides the node there was both vascular and lymph invasion.   Things seem to be clear now, but I know I have to be on my toes to keep aware of what's going on.

All the best,

Meg 

Jun 6, 2011 04:29PM barb3246 wrote:

I was not happy with the breast clinic I have been going to for many years, so I am now being followed by specialists at Brigham and Women's in Boston. Well I just got the results of my latest MRI (5th one in 3 years), and it was a BIRADS 3, probably benign, but they are recommending short interval followup , so yet another MRI in 3 months :-( The radiologist noted that I have many "bilateral foci of enhancment". They tried to compare this latest MRI with my previous one (from the other institution) and apparently the MRI quality was very poor so they could not get a good comparison, thus the repeated MRI in 3 months.

I am just so sick of all these tests and the stress that goes with it. I literally sat at my desk at work all day today with a headache, a knot in my stomach and so stressed out that I jumped every time the phone rang and couldn't eat or concentrate. I really don't know how I can continue to put myself thru this every 3 - 6 months for the rest of my life - its just too depressing to think about. I was really hoping for once to get a clean MRI and be told to just come back in a year. Sorry for the whining, but I just needed to vent to people who understand.

Jun 6, 2011 04:35PM Anne1962 wrote:

awb,

I think it might be a good idea to ask about an MRI. At least it would be peace of mind. 

Thanks,

Anne

Jun 6, 2011 09:38PM rehm046 wrote:

mdoak,  I think we all have to do what feels right-I tend to trust my gut-so if nothings changed, then I'm sure waiting two more weeks won't matter.

Meg,  Initially, after my excisions (so for the first two years) they would read my mammos right way-which was great.  After that, because I'd had a "clean" year they wouldn't do it anymore and said "LCIS is not cancer, so you will have to wait for your report like everyone else".  Believe me, I know all about that debate-is LCIS precancerous or not.  I ddin't much care-I wanted to know what they had seen.  It was some of these kind of interactions that,at first led me to believe I was overreacting, and finally led me to think I needed to do something more aggressive.  For me the preventative watching which made all the sense in the world six years ago, just began to take to much of a toll on me.  (sorry, I'm having trouble here with bold and italics-so please don't read anything into it).

 The most important thing is that we are all comfortable with our health care providers-be it a BS , a PS or an oncologist and that we feel comfortable with making treatment decisions with them,  (and you know what, I'm happy this statement is bolded!).  pat

Jun 7, 2011 09:54AM mdoak wrote:

evebarry, call! If you skip this mammo and something is found next time, you will be kicking yourself. If you're not comfortable with your doctors, shop around. I have wonderful radiologists at a dedicated breast clinic and am very happy there. I even went to an NCI high-risk clinic and did not like them nearly as much. Good docs are our there. Maybe call for this mammo and then make it your mission in the next few months to find a clinic you are more comfortable with. Good luck!

Jun 7, 2011 11:50AM Hindsfeet wrote:

awb, of course tamoxifin and rads were recommended. At first I decided against it due to $$$ ... After researching it and further looking into the side effects of tamoxifen and rads, I felt more comfortable with my decision not to do cancer treatment. I fully realize that I'm high risk for another recurrence. There are risk factors no matter what you choose. So...I chose for now the six month watchful approach along with trying to find why my body broke in the first place. My treatment for now is totally holistic.

And yes, I do need to go for a mammo or something. Just don't want to do it anymore. I'm having a hard time motivating myself to make the call.

Jun 7, 2011 06:30PM suzieq60 wrote:

Hi Girls - I'll join you on the 6 month watchful waiting program - alternate mammo/MRI. My first dx was Oct 09 (ILC) - a year later after chemo/herceptin and rads they found another one in the other breast (IDC) along with 2 spots of ADH. My bs wanted to do BMX but I refused as it seemed the new one had been there the year before and missed - totally different pathology and lower grade - and I do want to give the Arimidex a chance to do it's thing. The bs (bless her heart) did 2 lumpectomies on the same day and removed the ADH along with the cancer. I'm past due for my 6 month check up now, but have refused as we are going overseas to the UK and Paris in August and we don't want anything to stop us (my DH is a bowel cancer with mets survivor). The bs was very understanding as I have been through so much in the last 18 months, I just couldn't cope with it all again so soon. As soon as we get back at the end of September, I'll be off to do the checks - not sure if MRI or mammo and ultrasound - we'll see.

The breast clinic I go to now, don't let you go home until they have evaluated the mammo and US. I thought that was great but it's not nice to actually experience it. Especially not when you get called in again and again on the same day and have to sit there watching others go home all clear.

Anyway, thanks for starting this thread - great idea!!!

Sue

Jun 7, 2011 07:46PM michelleg1122 wrote:

maria5890,

thank you so much for the link, I am going to go check it out.  I wish mine was not painful ( my husband says it is my excuse so he can't touch them, I only wish lol lol).  When I was first dx my surgeon had said to leave it alone as well. I wonder now with the changes that just happend if he will say something different. Going to schedule my appt tomorrow.  I am probably overreacting but I was adopted so I do not have any family history.  Thanks again!