Help Please (very long)

2timer

I'm posting in this thread because the "Just Diagnosed" forum is full of women dx with DCIS and unfortunately, I'm not in the group.  I used to be though.  For over 6 years I was a survivor of a small low grade DCIS.  Monday I had a biopsy on the same breast and IDC was confirmed on the pathology report the next day.  The report doesn't really say much except that it is grade 1 IDC and the mass is 3.6 cm (actually it was 2 masses close together).  I guess that makes me stage II pending final pathology.  Never in my wildest dreams would I think I'd be praying to be stage II, but I am.  I don't even have hormonal status yet.  I'm just gutted;  I did all the followups and tamoxifen still got invasive cancer.

Anyway, I am at a complete loss.  Six years on this board and yet I have no idea what to expect.  I had a lumpectomy, rads and tamoxifen.  Didn't need chemo, lymph node removal or a mastectomy so I never read up on those things.  And now it's looking like I'll be going through all of them in addition to reconstruction.  And there are so many things that have to be decided upon.  

Unilateral or Bilateral mastectomy?

Immediate reconstruction?

Surgical recovery?

Trying to understand the final pathology.

What kind of chemotherapy?

Where to be treated?

This stuff has my head spinning.  In addition to having to deal with the naked fear of a bc dx, I have to decide how to go about getting treatment.  The hospital where I have been treated at has a "tumor board" and I'm going to that next week.  They'll have like 6 specialists there (surgeon, pathologist, med onc, rad onc. and some others) and they'll sit down and explain what's going on and what to expect.  I'm quite frankly horrified.  It's a great idea in theory but I'll probably sob through the entire thing.  And I really don't have anyone to take with me.  I've only told my boyfriend, not the rest of my family.  I'm going to try to get some questions together though.  It's a good hospital and they have always treated me very well but a small part of me feels they could have found this new cancer earlier.  I know this is wrong to feel like this but I can't help it.  I'm pissed and looking for something to blame.

Also next week I have a consult with a breast surgeon at another hospital in town.  This is a large teaching hospital and and a NCI Comprehensive Cancer Center.  It is ranked as one of the top cancers centers in the country.  And it has a large free standing breast center.  The surgeon I'm seeing is considered one of the top 1% in his field as is the oncologist there that I'm trying to see *and* the plastic surgeon. (This is according to US News and World report).  I'm not sure how much of a difference this would make, since my breast surgeon is considered one of the best in the city and the hospital is highly rated.

I see my bs on Tuesday, have the 2nd opinion meeting on Wednesday and see the University bs on Friday.  To top this off I'm scheduled for outpatient surgery on Thursday!!  My head is hurting just thinking about all of these meetings and getting all the information.

I'm not a breast cancer specialist, and I have no idea what is best for me.  I am sure that as more pathology is known that some of the decisions will be much easier.  But in the meantime, I have to suddenly get as much information as I can on mastectomies, reconstruction and surgical stuff related to that.  Plus I have to decide whether or not to leave the hospital system (and doctor) that I've been with for years, to go to a new larger system and brand new doctors I know nothing about.  All for a few more bells and whistles that may not make a difference.

Where to begin ... where to begin?

thanks for reading

J9W

Yikes.  As you know, it will get easier as you get answers. Since you are going to the meetings without another set of ears, you may want to ask the Docs if you can tape them. I know that I missed half the stuff being told to me when I was in those appointments but I was lucky because I had someone else there with me.  Cyber hugs.  Janine

NatsFan

2 - I think your idea of the second opinion at the NCI center is a good one.  It's always good to have a second set of eyes review your case from top to bottom.  Even if they give you the exact same info as your current doctors, sometimes hearing it phrased differently or in a different setting can help you comprehend more.  The more information you have, the more comfortable you will be making decisions. 

Don't get too hung up on whether this doctor is tops or that doctor is tops - some of these "top docs" have the bedside manner of a box of rocks and seem to care about their patients just as much.  You need to assemble the right medical team for YOU. 

I would really try to get someone you trust to go to these appointments with you.  Maybe the hospital has a local b/c survivors group and one of the women there could go with you if you can't work out something with a friend or family member.  And J9's suggestion to tape them is excellent.

FWIW, I was a Stage IIb 5 years ago - with a positive node and Grade 3 disease - and I'm alive and kicking!  I won't sugarcoat it - the next year for you isn't going to be a walk in the park.  Whatever treatments you decide to do - surgery, chemo, rads - are not fun, but you can get through them and come out better than before.  Knowledge is your best weapon at this time, which is why that second consult will be so important.  You've beaten back this disease once - you can do it again.

Good luck!   

Outfield

2timer,

I am so sorry you are facing this.  

First, I think a second opinion is always a good idea.  Most doctors won't disagree with that, except maybe some arrogant ones.  I wouldn't want my care in the hands of someone that arrogant.

The first decision in front of you is just the surgery, unless your tumor is large enough that they offer you neoadjuvant chemo.  It sounds like it is not.  There are pros and cons for both UMX and BMX.  There are a lot of old threads on this question, and I bet you could pull some up searching for them.  I myself chose BMX because I knew before the surgery that I just could not live with any more future scans and biopsies than necessary - my anxiety would have seen the other breast as a ticking time bomb.  But that is just me and my mind.  The other issues were symmetry and being active comfortably.  I've remained flat and am happy with my choice, but I know there are women who made different choices who are also happy.  If you have the concentration power and time right now, it would be worth searching for some old threads.  

There actually aren't that many choices for chemo.  It's usually AC/T, with very similar alternate drugs sometimes used to substitute for Adriamycin and Taxol.  Other regimens aren't quite as effective but are less toxic, so they may be offered to women who aren't in as good of health at diagnosis or who are sort of at the borderline of needing chemo.  There are some choices with how to schedule AC/T, especially the Taxol, but probably both your oncologists are going to recommend the same thing because there's been recent study showing one of the schedules to be as effective but with different and probably less-severe side effects.  The AC schedule will likely depend on your baseline state of health.  Dose-dense every 2 weeks is slightly more effective, but it makes people sicker.

The surgeons may have different things to say about node dissection, or it may be the same.  I think it makes sense to hear them both, then analyze the information.  What makes sense really depends on the situation.  Standard of practice for node dissections also has been changing rapidly, so you really need to know where you're at and talk to the surgeons.  From what you already know about your tumor you will need a sentinal node biopsy, but beyond that it very much depends on the findings of your evaluation.

Good luck.  A doctor who is afraid of someone asking questions isn't worth their salt.

msphil

with my experience I took along my sisters and or my husband, I would have never remembered any of the info,you are so overwhelmed at that time,I had option of lumpectomy and I decided on mastectomy and chemo and rads, I went with reconstruction but my body rejected the expander and it was removed,it is always a good idea to have a 2nd opnion.  I am a 19 yr Survivor(Praise God) God Bless. msphil(idc,stage2,0/3 nodes,L mast,

sashabello

Can you please tell me the name of the Oncologist your talking about I'm also looking for a great oncologist.

2timer

Just a quick update.  I spoke with the people at both hospitals.  I have decided to go with the 2nd opinion breast cancer center.  They are much larger and are attached to a teaching university.  I feel that I might fare better here since I have a much more advanced cancer than before and this place is an NCI cancer center.  At the hospital I was at before, I was more attached to the breast surgeon than the rest of the breast cancer "team" (if that is what you call it).  He'd only be doing the first surgery and very limited followup. Frankly, I have little respect for the rest of the treatment people there;  I am still resentful that I was not followed up on more carefully and this is a big reason I'm going through this now.  I'm determined to put those feelings behind me but no way will I give them the chance to treat this disease again.

I'm having immediate reconstruction.  It's going to be difficult in the beginning but I'd like to give it a chance.  Part of me still wants to go flat but I guess leaving the hospital with some boobage will lessen the shock.  Only thing is they have to coordinate both surgeons and the earliest I can get in in August 28th.  That makes me a bit nervous but on the other hand it gives me a lot of time to prepare.  The reconstruction will be a Diep Tram Flap or something similar.

Still struggling emotionally with this dx but I'm managing.  I try to do whatever I can to take my mind off of it and for the most part I'm ok.  Sometimes though, my mind will wander into really dark places.  I so want to be positive and a fighter but I hate the idea of being treated for  invasive cancer and being a part of that world.  I sometimes looka people wistfully thinking, "I wish I were one of them".  I also don't like to look at myself as a fighter or someone "fighting a courageous battle.  I'm just someone who is being treated for cancer.  

Other than that I'm hanging in there.

min937

Since you're in OH, I assume you're talking about The James/Spielman Center?  I went there for a 4th (yes, 4th!) oncologist opinion, and ended up going with the recommended treatment plan of the doctor I saw there.  I hope you can at least find some comfort in knowing that you are in good hands there.  ((hugs))