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

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jun 2, 2011 09:33AM - edited Jun 2, 2011 09:34AM by SarahsMom

SarahsMom wrote:

Oops, meant to say "Members" in the title - guess I need more coffee!

Hi ladies, just wanted to start a thread to pull together thoughts from many boards on this subject.  I've been in the 6 month club for 5 years now.  Like someone else out here recently said - if I don't have cancer now, I surely will get it from all of the diagnostics!  One ductal excision, focal asymmetry, increasing density and calcs. Always takes weeks to sort through the findings, then "see you in 6 months", which, by that time, is really 4 months. The roller coaster never ends. 45 years old, high risk due to family and other factors, thinking about Tamoxifen, a proactive mastectomy...not sure.

It is helpful sharing the journey with all of you wonderful ladies! 

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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...... :-(

Barb
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Jun 2, 2011 06:56PM SarahsMom wrote:

Hi Barb,  thanks for the post.Every doctor I've talked to is against MRIs because my left breast would light up like a Christmas tree.  I really want one to see what is going on in the dense areas, but I guess then I would know too much, like about all of the benign stuff. It's a tough decision. 

My 6 month check is supposed to be in June but there is so much going on and I feel like....why ruin the summer?! I don't know. Every time I pick up the phone to make the appt I hang up. Probably too late now and June is booked anyhow. Maybe tomorrow...

I agree. One of these visits I think the rug will get pulled out from under me. 

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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.

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Jun 3, 2011 02:19PM shelle3 wrote:

I always liked being in clubs...until now.  Frown

My first 6 month follow up is June 21st.  All this testing, waiting, worrying, rinse and repeat just sucks.

Shelle

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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.

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Jun 3, 2011 10:42PM rehm046 wrote:

I have belonged to this club for the last 6 years.  Two things:  mdoak, I'm not sure I would wait until the 20'th to find out what the symptoms you are experiencing mean.  I am not, in any way, trying to frighten you, but they sound like symptoms a close friend of mine had (who is alive and well to talk about it 15 years later) but it was a pretty aggressive situation.

Secondly, I really got tired of the routine: MRI's annually, alternating with mammos and ultrasounds, excisionos on an as needed basis (3 in six years)  needle biopsies, including a stereotactic biopsy-which, frankly, I found barbaric.

So, after getting a second opinion, I've decided to quit the club-sorry ladies.  I'm opting for a PBMX and will be having the surgery-with reconstruction-June 14'th.  I've gone back and forth on this decision for 5 years.  After the last (nearly botched-they almost biopsied the wrong site) I decided enough!  Luckily for me, my new BS was supportive-she does about 15 PBMX's a year and the PS is wonderful.

Does that mean I don't still have days when I say-the watchful approach wasn't that bad?  NO. But I think I lost weeks of my life everytime they found "something" and I had to wait for the biopsy, the surgery, the MRI.  I can't do it anymore.

I would NOT have made this decision 6 years ago, or even 4 years ago-it's a rather drastic decision to make-and not for everyone, but I feel like it's the right decision for me.  Just thought I's share-as I have been a member of this club for a long time.   Pat

Pat Dx 6/18/2011, DCIS, Stage I, Grade 1, 0/0 nodes
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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! 

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Jun 4, 2011 03:28PM 22lifeisgood wrote:

Glad you made your appointment carpediem19!! I am on 3 month watches with my (hot) breast surgeon and at the end of July go for my annual mammo/us to see if anything has changed. Still have the breast/armpit discomfort (although not as bad, or maybe I am just used to it after 2 1/2 years?)

mdoak - how wierd! I had small pinkish blotches show up the other day  - 3 of them - showed up out of nowhere but mine were gone the next day. Didn't itch or anything just there. Of course I have sensations in this bad breast of mine, but I can never decipher if it's a new sensation or just a continuation of everything else! I will say when I saw those blotches I about $#it my pants thats for sure! 

Glad the spots are gone - my breast never got hot or felt warm just those 3 little blotches that went away within 24 hours.......... strange. 

With being on these watches I think I am just exhausted with being "hyper" aware of everything. Anyone else feel that way? I just want to live my life without fear. Being diagnosed with skin cancer in February didn't help my paranoia any either. :( 

Well, here's to us gals in the watch and see club! It's a great day for sunshine, laughter and an adult beverage or two! 

Worry never robs tomorrow of its sorrow, it only saps today of its strength
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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. 

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Jun 5, 2011 01:25AM Anne1962 wrote:

I would like to join the club. I am high risk with atypical lobular hyperplasia (ALH) and a few other odds and ends. My BS initially told me I would likely need a PBM at some point, but then she said I could go back to once a year mammos. I am also heterogeneously dense. What gives? I had a stereotactic done for microcalcs and the report said to do an excisional, but she didn't deem it necessary. Anyone else here with ALH? Some call it pre-cancer and some say it is not. I am a little frustrated wondering if there is something more lurking in there.

Thanks for listening,

Anne

Anne1962
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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

Dx 3/12/2009, IDC, Right, 1cm, Stage IIA, Grade 2, 1/5 nodes, ER+/PR+, HER2-
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Jun 5, 2011 02:42PM awb wrote:

Anne-----ALH is a precancerous condition (I have LCIS which is the next step up the bc spectrum; a stage 0  in-situ bc  which is non-invasive)---generally the recommendation for ALH is just for yearly mammos and twice yearly breast exams, with the addition sometimes of tamoxifen if there are other significant risk factors, such as family history of bc. If you have a lot of density, perhaps you could ask for an MRI.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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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. 

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Jun 5, 2011 03:04PM awb wrote:

I've actually been at this for almost 8 years (LCIS and family history of ILC). I don't like to think of it as "watchful waiting" however. I  like to think that I'm actively fighting this by taking  preventative meds. (tamox for 5 years, now evista for over 2 years; continue high risk surveillance of alternating mammos and MRIs)

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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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 

Dx 3/12/2009, IDC, Right, 1cm, Stage IIA, Grade 2, 1/5 nodes, ER+/PR+, HER2-
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Jun 5, 2011 09:57PM mdoak wrote:

Megadotz, your post confirmed what I feel about the six-month club -- I know I'm high risk, and I'm very glad to be watched carefully. I don't have any desire to have a PBMX -- and so it's important to me to get the best preventive care possible. I think after this next round (and with my first MRI, I'm expecting biopsies) I will feel assured that nothing is going on in there.

Pat, I can't bring myself to call with only two weeks left until my appointment. The spots haven't gotten any larger or redder, and they don't sting or itch anymore, so I'm hoping it was just some freakish bug in my bra. If not, I'm sure they'll catch it on the 20th.

Carpe, I'm very proud of you for calling. I hope this time they give you an all clear.

Is anyone going in for screening this coming week?

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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.

Barb
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Jun 6, 2011 04:34PM Anne1962 wrote:

carpediem1965,

Thanks for the welcome. I will hang out with you gals and learn all I can. It helps to know there are others in the same boat.

Anne

Anne1962
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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

Anne1962
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Jun 6, 2011 09:10PM - edited Jun 6, 2011 09:12PM by VSM

Evening Ladies!

Mdoak, I go in on Wednesday morning--the BS said he wanted to be there this time(It will be at the breast center connected to the clinic). 

Six months ago, the first radiologist wanted me in for an immediate biopsy--4 days later--new radiologist, no biopsy, no testing of fluid, a cyst was aspirated......The only explanation for the 180 degree difference of opinion, "We have 2 radiologists and we see things differently..."  I think the BS wants to check it out for himself, but we'll see what happens... I'm actually very calm this time around. 

I wish I could bottle my calmness and pass it out to everyone--AND save some for myself for when my nerves kick in and the mind starts spinning!!!!!!!!!!!..........

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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

Pat Dx 6/18/2011, DCIS, Stage I, Grade 1, 0/0 nodes
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Jun 7, 2011 02:56AM Hindsfeet wrote:

This is a club I should join. Dec 2007 I had my first lumpectomy only, Dec, 2008 my second lumpectomy only (same breast) and March 2011 I had a lumpectomy only on the other breast. I've chosen to do the 6 Month Watchful Waiting :) I hope that if something is found it's early. So, I'm slowly plugging away at my breast hoping each time that it will never happen again, and if it does next time I'll probably bite the bullet and do a blmx with reconstruction. Fortunately so far my dx's have only been early stage cancers.

 I have been doing a mammo and one mri a year...six months a part. And, I am now due for my annual mamo at least for the right breast. I haven't called for an appointment. I'm am so tempted to skip it this time. I know to stay safe I should, but I'm getting weary of the six month check ups. I also need to find a new doctor. I need to find an oncologist or if to just ask my primary care physican for a mammo. I pretty much now just take it all into my own hands. I saw one oncologist who quit due to her own health problems.

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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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!

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Jun 7, 2011 10:59AM awb wrote:

eve----they didn't recommend any further treatment (radiation ? tamoxifen?) for your diagnosis? At the very least, you should go for your mammo; I would strongly encourage you to also  be followed regularly by an oncologist.

anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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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.

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jun 7, 2011 05:11PM michelleg1122 wrote:

I was diagnosed with PASH in 2009 and was doing the 6 month wait game, I got the all clear to wait a year and then BAM big changes.  I just got my biopsy results back today (which I found odd it said "no tumor found").  There were fibrocystic changes but I have got to say I don't really want to go back to the every 6 month lets see what we get game.  I need to schedule a meeting with the surgeon and I am going to look into a lumpectomy.   The origional lump (the one with PASH) is very painful.  Does anyone have any experience with lumpectomy or PASH?

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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

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jun 7, 2011 07:08PM - edited Jun 7, 2011 07:13PM by marie5890

Michelle,

I have a PASH tumor, discovered back in Nov and biop showed it to be PASH late Jan.

My BS sees no reason to remove it (causes me no problem) and he doesn't have me doing the 6 month follow up. From what I get from him is that he really is no concerned about it. 

Gov. link to PASH

www.ncbi.nlm.nih.gov/pubmed/78... 

edited to add link 

Jan '11 Biopsy Dx-ed a PASH tumor (rare, but benign tumor)....All I ask is for peace and serenity to the depths of my soul. Makes the rest of life more live-able.
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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!

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Jun 8, 2011 09:09AM vmudrow wrote:

carpedium - I understand the worry while waiting after each test.  I decided not to be a part of the 6 month waiting club - tired of the worry and testing.  I had PBMX May of 2010 - so happy with the outcome and the worry is gone.  I had been worrying for 20 years since age 30 when I started having mammos because of mother having breast cancer.  Twenty years of worrying, call backs, biopsies etc.  It wasn't fun.  Good luck!!

valerie, Diagnoised 1/24/2010 with atypical lobular hyperplasia, prophylactic NSM on 5/6/10, strong family history, 40% risk of breast cancer

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