Calling All Conservative Treatment Ladies!

Rockym

I’m looking for advice, ideas and opinions.  I know you guys are out there as I have spent
3 years on these boards.  I am off to my
annual mammo in a week.  Last time I went
they found micro calcifications in my left breast.  I was originally treated for IDC and went
through surgery, chemo and rads.  After
that last mammo, I was brought to “The Room” where the radiologist told me her
recommendation was a biopsy.  I already
had one biopsy (not including diagnosis, etc.) after the first mammo after treatment and ended up with lymphedema of
the trunk and breast.  The biopsy showed nothing but a
couple of cysts they wanted to aspirate.  The next time they
wanted to do a biopsy was because they squeezed my breast so hard, they pushed
fluid out.  I said no to that biopsy and
the radiologist then said that it really didn’t look like a big deal.  Okay, if it's not a big deal, then why the recommendation in the first place?

On the last mammo when they saw the microcalcifications, she said she
had to recommend a biopsy.  I questioned
her as this place seems either a bit biopsy happy or covering their butts.  Either way, she told me that if I were anyone
else, she probably wouldn’t mention the micros, but with my history she has
to.  I didn’t do the biopsy six months
ago and so here I am.  The wait and see
doesn’t bother me one bit.  In fact I don’t
think I would even want to know about DCIS if that was the case.  IDC yes, but DCIS… not so sure.

Anyway, this is now pretty long and I am
curious what everyone thinks.  Obviously
I am hoping she sees the same 5 little nothings and there is no change, but if
she does see more then what?  I just got
my life back these last 6 months.  I have
hair, breasts look okay again and I am feeling optimistic.  Only this upcoming mammo is weighing on
me.  Thanks.

Ariom

Hi Rockym, I am so sorry you find yourself in this situation after what you've already been through.

It's a tough call, but of course the micro calcs are the issue here and the sneaky way that there can be micro invasion, along with DCIS in those micro calcs.

The tough part is that no one can actually make that call, that it is "just" DCIS and it is safe to wait indefinitely. There have been many women here who have been shocked to find that what they thought was simple DCIS, was in fact, invasive and I guess that is the reason your Tech has mentioned it and suggested you have the biopsy.

As with anything, it is absolutely your call, but since you ask for input, I would be having the biopsy to show me what I was dealing with. 

There is a wonderful member here, Beesie, who is well versed in everything to do with DCIS. I hope she will come in and give her opinion.

In the meantime, till others come to give you some other advice and opinions, I wish you all the very best and hope there is no change since your last test and there is no decision to be made. Take care!    

Rockym

Ariom, thanks for posting.  Maybe there aren't too many who lean on the conservative path out there.   I hope you are right and there are no decisions to make.  I was getting anxious last night when I posted and thought I'd get some feedback.  I did find a post with a lady who knew she has DCIS but wanted to wait and see.  Needless to say, it was a heated thread.  A lot of ladies said that DCIS can hide the IDC.  I guess for the first time in my life I would like to be ignorant.  If there are microcalcifications in there, then perhaps we can just keep an eye on them and make sure they don't get to the "must biopsy" appearance.  I was told DCIS at this point would mean MX.

farmerlucy

Rockym - All the ongoing stress really sucks. I understand about not wanting to know. If there were a test for mets, I don't think I'd take it. But - your case it may be a little different in that early IDC (worst case) may only require removal and hormonals. I am not big on trusting imaging. I figured with all the high risk screening I was having, if I had anything it would be caught at stage 0. Nope - heck I totally skipped the DCIS part.

It sounds like you have a good relationship with your radiologist. You'll know what to do when the time comes. Hugs.

Susie123

Rockym,

I felt that I should share with you that micro calcifications are not always just DCIS or less. I know because that's all I had and I have IDC. They caught it early, stage 1, with no nodal involvement. But it was invasive. Mine were called "cluster micro calcifications". Did they use the word "cluster" with yours?

Rockym

Hi Susie, I did recheck my report and it says indeterminate microcalcifications.  She gave me a birads 4A and called it a suspicious abnormality of low suspicion.  She also mentioned in her report that I had new coarse calcifications compared to the last mammo, but they appear benign.  The area by my previous cancer was given the clear with no suspicious mass, etc.  So, no cluster wording.  I looked at my films and I only see 4 or 5 very small things, but her concern was that they were near each other.  I was told that either way, they probably won't go away, but if they just stay the same I'm fine.  As we get older our breasts change and unfortunately because of the history, we get watched like hawks.  Sometimes too much, but it's hard to know when to let them poke and probe and when to have them leave you alone.  Oh well, it's only two more weeks.  I will keep crossing my fingers and hoping for the best. 

Ariom

Hello again Rokym,

There is a very good chance that you will have a benign result, if you have a biopsy. Birad 4a, low suspicion gives a better than 80% B9 result.

I was told that micro calcs and indeed macro, or course calcs are to be found in most women's breasts. It is the clusters that cause the concern. Mine was a cluster of Micro Calcifications that resembled the Nike tick, or the milky way. I had a stereotactic core biopsy and intermediate and High grade DCIS was present.

The first surgeon that I saw wanted me to have a Lumpectomy and 6 weeks of Rads, but I had extenuating circumstances that made me decide that a Mx was the right choice for me. Fortunately, the Surgeon I ultimately chose, agreed with me.

I have Rheumatoid Arthritis and Asthma so I really wanted to avoid Rads if possible. I also have a husband who is a C5/6 Quadriplegic from a hang gliding accident  and we live in a small coastal town which is about a 3 hour drive from the nearest facility where I could have had Radiotherapy. I chose not to have to stay in another town 5 days a week for 6 weeks, to receive the Rads.

This was just my personal choice. It certainly wouldn't be right for everyone with a similar Dx. I was fortunate that there wasn't anything sinister found in my Final Pathology, so I managed to dodge the Rads completely.

Everyone has a different situation and different reasons for choosing different options. For me, it was the right decision and I have no regrets at all.

I am hoping you don't require any more treatment:) Please let us know how you get on. 

Rockym

Ariom, thanks for sharing your story.  I did wonder why the MX with your dx.  My story began with my routine mammo that day becoming an immediate biopsy with a dx almost an hour later.  My BS was Mr. Optimistic and said lump, internal rads and we're done.  I come out of surgery and was told sentinel node clear and happy day... until pathology comes in.  Next I hear that while SN is clear, two other nodes are not  They are micro and now I have to decide.  Oncotype gets a 22 so treatment plan changes.  My long lovely hair goes off to Locks of Love and I go through a year of treatment hell and then the emotional recovery from treatment, instant menopause, etc. set in.

The first biopsy after my recheck sets off lymphedema.  It amazes me that they know when lymph nodes come out how vulnerable the area is and yet they were so quick to put a needle in my breast.  That test sets off a cascade of emotional turmoil for me as one breast was a full D cup and the untreated was a B.  I was so uncomfortable in my own skin I became suicidal.  It was also the Tamoxifen I was taking, the Ativan for sleep and nerves, etc., but an awful situation.

The next time they wanted to biopsy, I was much more proactive in that I said no first, researched what they were thinking and realized there really was no reason.  The radiologist confirmed later I realty didn't have to biopsy, but now  question everything with follow-up treatment.  Heck, my MO sent me for a whole body bone scan last month after I told him I had some pain in my hip and thigh upon waking in the morning.  Glad to say no mets, but since it wasn't an invasive test I was okay with that one. :-).  I also take my emotional health into account and what would I do in various seenarios. So, a bit scared about next

Ariom

No problem Rokym, I know people wonder about my choice, but it was the right one for me. You really have been through such a lot! Thanks for sharing all of those details too. I can totally understand your reluctance to have more invasive tests. Your emotional health is just as important as your physical health. I do feel for you being thrust back into this again.

Like everything on this journey, it's a crap shoot. My Surgeon told me that it would be "remiss" of him not to do a SNB when I had my Mx, because once the breast was gone there was no way of doing a SNB, if there is any invasion found in the Final Path report. I felt that, in all good conscience, even though it was and unlikely scenario, I should go ahead with the SNB, because when my Mother had her Mx in '94 she had an Axillary Clearance, just because they had to check for any node involvement. The SNB was not available then, but if it had been, she may not have had the lifelong LE she ultimately got from the clearance, even though, for her, there was no node involvement found.  

Just another explanation of how certain decisions  are made, from our different life experiences.

I don't know what the answer is, certainly knowledge is power and arming ourselves with as much information as we can, is one way to be in some control of our own care plan. I have a very pro active team, and it sounds like you do too. I know it can feel like they err on the side of caution, but I've read some horror stories here of Doctors  who just don't take things seriously enough and women have slipped through the cracks.

I am sorry you find yourself here again, facing the same fears, but I am really hoping that you fall into that broad 80% with nothing else needed to be done!  Good luck!