Starting from Square One - Thanks in Advance

FLhusband

Starting from Square One - Thanks in Advance

FLhusband

At the suggestion of responders to this post in Just Diagnosed I'm asking for more specific DCIS direction related to our recent diagnosis: 

My wife (we), was just diagnosed at age 54.  A mamo 6 months ago indicated some "suspicious" spots with a 6 month followup that recommended  Sterotactic (?) needle biopsy.  Pathology:

"Left breast microcalcifications":  Extensive pattern of ductal carcinoma in situ, solid and cribriform patters with focal central necrosis and calicifications (Nuclear grade 2-3/3).

No invasive carcinoma seen.

Focal associated lobular carcinoma in situ.

Background fibrosystic changes with microcalcifications.

Longest focus of DCIS measures 0.75cm.  Immunostains for smooth muscle myosin heavy chain were performed on both blocks and revealed positive staining surrounding the DCIS.  Immunostains for E-caadherin were performed and revealed positive staining on the DCIS and negative stainingon the LCIS.

 Hormon receptors and HER-2/NEU by Immunohistochemistry (IHC):

Specimen Source:  Left breast

Diagnosis:  Ductal carcinoma in situ

Estrogen Receptors:  positive 3+

Progesterone Receptors:  positive 3+

Her/2/neu oncoprotein:  negative

Estimated fixation time:  13 hours, 23 minutes.

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So, from what we can find so far:

1.  "good", we guess, that this is in situ?

2.  "good", we guess, on the positive horomones and negative HER-2

3.  Work done at hospital women's center on referral from OB/GYN.  Based on discussion at center and with OB/GYN we have two appointments set.  The general surgeon who "does most of the breast cancer surgery" in town, and the doc who heads the center who apparently specializes in reproductive cancers (fellowships in gyn oncology and breast diseases).

So, here's the range of questions I'd appreciate input on:

 1.  Additional diagnostics are coming we guess to better understand extent of involvement.  Understand lobular most likely in other breast?  Also assume that MRI, which was mentioned, is next diagnostic tool?

2.  Is further surgical investigtaion likely/warranted, i.e., excision biopsy as part of the diagnostic?

3.  Who should we look to for the best guidance...surgeon, oncologist?  Is there role for our family doc (internal med) in oversight?

4.  Any additional testing desired?

5.  Factors to weigh in considering surgery (lump vs mastectomy)

6.  Likelihood/desireability of medication, radiation, chemo?  Factors influencing either or all?

Enough questions?  If I've missed any please feel free to suggest.  Its early but we're a sponge right now.  No real panic....just obvious concern....and an interest in knowing what we're getting into so when we hear it we'll better understand.

Thanks to all in advance.

FLhusband

redsox

...questions I'd appreciate input on:

 1.  Additional diagnostics are coming we guess to better understand extent of involvement.  Understand lobular most likely in other breast?  Also assume that MRI, which was mentioned, is next diagnostic tool?

The next steps are to determine the extent of disease, as much as possible.  MRI is usally the next step.   In the absence of indications of problems in the other breast, that is still not too likely although the risk is higher than without this diagnosis.  It is important to check out the other breast because it can make a difference in your treatment decisions. 

2.  Is further surgical investigtaion likely/warranted, i.e., excision biopsy as part of the diagnostic?

The next surgery would be lumpectomy (partial mastectomy) or mastectomy.  Excisional biopsy is usually done only if the needle or core biopsy does not find cancer but there is still reason for suspicion.

3.  Who should we look to for the best guidance...surgeon, oncologist?  Is there role for our family doc (internal med) in oversight?

I got referral from gyn to breast surgeon and from breast surgeon to med onc and rad onc.  The breast surgeon usually takes the lead until the tumor is removed with satisfactory margins.  I did not see the med onc or rad onc until after that.  If you / your wife start to think about mastectomy I think you should see rad onc and maybe med onc before deciding. To some extent who you rely on for guidance depends on who you trust.  If the gyn or internist is an established trusted relationship, it is fine to ask for advice.  They will all have had some patients with breast cancer but may be comfortable giving advice only up to a point. I am a believer in figuring out who you trust and who you can talk to comfortably and get good answers to your questions.

4.  Any additional testing desired?

MRI is probably it given results above until the surgery or post-surgery.

5.  Factors to weigh in considering surgery (lump vs mastectomy)

The biggest factor is the extent of disease in the breast. If too extensive lumpectomy may not leave good enough appearance.  The second factor is patient preference.  For DCIS survival is similar and very good with both lumpectomy / radiation therapy (breast conservation therapy -- BCT) and mastectomy.  BCT will have somewhat higher recurrence rate but can be down to about the risk of a woman without a breast cancer diagnosis and will almost always still be salvageable. Mastectomy has some but very low risk of recurrence of this cancer. Many considerations come into this -- appearance, sensation, risk of recurrence, getting through treatment, personal risk preference. If both are options take a little time to think through the decision and its ramifications. 

6.  Likelihood/desireability of medication, radiation, chemo?  Factors influencing either or all?

There is the possibility that the final pathology from surgery will show invasive cancer in addition to the DCIS.  If it is only DCIS it cannot spread outside the breast, therefore, no chemo.  Radiation should accompany lumpectomy (in most cases).  Usually mastectomy will not require radiation unless margins are too small.  Tamoxifen is likely to be recommended since it is ER+ and PR+.

Beesie

Flhusband, I responded to your post in the Just Diagnosed section; I'm the one who suggested that you read the DCIS and Surgery forums.  I won't copy my answers over here but there are a couple of additional thoughts I'll add:

First, the thing to understand about breast cancer treatment is that while many women have more than one type of BC, (DCIS and IDC are often found together, in your wife's case, she has LCIS & DCIS), it is always the more serious of the conditions that determines the staging and the treatment.  So in your wife's case, with LCIS and DCIS, her treatment will be based on the DCIS.  Because the LCIS is the less serious of the conditions, it will be assumed that whatever is done for the DCIS will also address the LCIS.  The one area where the LCIS will affect your wife is in the determination of future risk (the risk of a new primary breast cancer either in the same breast or contralaterally), since those with LCIS may have a greater risk.  As I suggested in my earlier post, an oncologist can help your wife understand this.

Second, it will be very important for you to remember that this is your wife's breast cancer and ultimately, the decisions are hers.  She likely will have to make some very difficult decisions that could affect her body for the rest of her life. I'm sure that your thoughts and input will be important to her but you need to be careful to not influence her to make a choice that she would not otherwise make.  For example, if your wife would feel more comfortable having a lumpectomy but decides to have a mastectomy because she knows that's what you think is best, over time she might be very resentful of this decision and your part in it.  Similarly, if your wife feels more comfortable having a mastectomy but decides to have a lumpectomy because of your influence, she might end up miserable, worrying all the time about a recurrence or new cancer.  The same applies to decisions such as radiation and hormone therapy (Tamoxifen).  You can play a huge role in helping your wife understand the pros and cons of each option. You can ask her questions and present different scenerios (what ifs...) to help your wife figure out in her own mind which decision is best for her, not just in the short term but over the long term (5 years, 10 years, the rest of her life).  In the end, it's what she thinks and it's what she is comfortable with that should drive the decisions.  In other words, help her with the decisions but don't direct those decisions.  And - very important - make sure that your wife knows that you will support whatever decisions she makes.  She's the one who has breast cancer.  It's her body that will be cut into.  She's the one who will have to deal with the side effects of radiation and hormone therapy.  And 6 months or a year from now, when this is done and you are no longer thinking about it much, your wife will probably still be dealing with it emotionally and mulling over in her mind whether or not she did the right thing. 

I hope that makes sense.

sweatyspice

Hmmmmm.....where to begin.

I'm assuming that she just had the six month followup which resulted in the stereotactic biopsy....or am I getting that wrong?  Are they suggesting a a followup in six months at this point - because that doesn't seem right at all!!!

I'm a bit confused by the path report saying the longest focus is .75 cm but at the same time saying there is an extensive pattern of DCIS. 

I'm guessing the next step should be MRI (and maybe ultrasound), to find out as much as possible HOW MUCH DCIS or LCIS is really in there, and if there's anything of concern in the other breast.  I hate to say this, but if she truly has extensive DCIS, lumpectomy may not be a reasonable option and she may have no real choice but mastectomy.  Extent of disease is a major factor in lumpectomy v mastectomy, and if there's a lot of disease there may not really be a choice.  Howeer, if she's sufficiently large breasted, even with exensive DCIS she might be able to have a lumpectomy.

I'd definitely recommend an MRI to get as much info as possible prior to surgery about the likely extent of the problem.

From what I understand, lobular is an indicator that there may be problems in the other breast at some point - not necessarily that there is a problem in the other breast right now.  I know I'm not explaining that well, perhaps someone will come along who can better explain.

I don't see any reason for an excisional biopsy as part of the diagnostic process before definitive surgery.  As things unfold, that might happen for some reason, but at this point I'd say you're probably looking at more imaging and then mastectomy (or the choice of lumpectomy if I'm misunderstanding the extent of disease, and it's not really all that "extensive.").

The family doc should be kept in the loop, but for the most part they're not involved in treatment or treatment decisions.  You're now in the realm of the specialists.

As far as surgeon v oncologist is concerned, the onc deals with systemic medication, the surgeon deals with surgery.  Generally, surgeons guide this initial part of the process though under certain circumstances a consult with an oncologist before surgery may be helpful.  I'm not sure you have enough information yet to make a consult with an onc worthwhile.

If she has "pure" DCIS - if after definitive surgery there's still no evidence of invasion - she shouldn't need chemo.  That said, if she has a large area of DCIS, there's a greater chance of an invasive or microinvasive component hiding in there somewhere.  If so, that may change things - but you don't know if that will happen and it may not happen.   Chemo is the realm of the medical oncologist.

If she is able to have a lumpectomy, radiation is standard of care.  There are certain cases in which radiation can be avoided, but those are the exception to the rule and sadly, it doesn't look promising in her case.  Those are also decisions that can't be made until after surgery because so much depends on the surgical margins from area of DCIS.  Radiation is the realm of the radiation oncologist.

If she has a mastectomy, in most cases radiation will not be necessary.  However, there are some cases where it will be.  I think Beesie has a thread explaining that.  It's one more thing that can't really be known until after surgery.

If she has "pure" DCIS (no evidence of invasion) since she's hormone receptor positive, she will likely be offered Tamoxifen if she's premenopausal or ....what's the one called when you're postmenopausal....?  Hormonal drugs are given to prevent recurrence or a new primary.  If she had a unilateral mastectomy the purpose would primarily be to prevent disease in the remaining breast (might be suggsted due to the LCIS).   Hormonal drugs are also the realm of the medical oncologist.

Really, right now you need to find out how much disease there is.  It's difficult because none of the imaging systems are perfect.  Sometimes they overestimate and sometimes they underestimate.  I'd definitely suggest getting an MRI, it seems to be the best predictor even if it's not perfect.  Once you have an idea of the extent of disaease, you can start making surgical decisions.   

I really didn't want to hear this at the beginning, but unfortunately it's true - this is a long process.  It's not over quickly.  It's just not. You have to emotionally accept that it's a long road which you can only deal with one step at a time.  I really fought that, it was a waste of energy.

For now, in my opinion, find out how much disease there is.  Then you'll know if lumpectomy and radiation is an option.  If not, mastectomy will bring it's own set of reconstruction options and decisions to make. 

It's natural to want to map out a treatment plan now, to give yourself a greater feeling of control.  Unfortunately, it just won't work that way.  You can only deal with decisionmaking as you get each new piece of information.

Wishing you all the best.

FLhusband

thanks to all here, and particularly bessie's comments.  my wife is a strong, capable person so i sincerely trust in whatever decision she makes.  we're obviously very early in the process and starting here with questions seemed to the one thing i could do, besides love and hugs, to keep myself busy while we wait for upcoming appts.  thanks again.

lbrewer

this forum has wonderful women who are willing to help and share resources.  I'm a florida girl too and have met several others, some of whom we've met in person.  Please feel free to message me if I can help.  We may be neighbors!

laurakay

You're being a really great husband.  I think all this has been really hard on my husband, but we've gotten through it, and are stronger for it.