Help Please (very long)

2timer

(this is a copy of a thread I started in the stage 1 and 2 forums, I'm not trying to spam the board, just trying to get as much help as I can)

I'm posting in this thread because the "Just Diagnosed" forum is full of women dx with DCIS and unfortunately, I'm not in that group anymore.  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 his 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

MelissaDallas

Hi Twotimer. I don't have answers, but gentle hugs from me. I'm very sorry.



The boards tend to be very slow on holiday weekends, but someone with more pertinent experience should be along soon.



Melissa

Anonymous

2timer: I am sorry you are going through this again. As you know, mastectomy v. lumpectomy is a very personal decision, and I wouldn't want to influence you. If you have ANY questions, I'll happily answer them.



Do NOT do immediate reconstruction if there is any chance you'll need rads. My surgeon did a lymph node dissection first, then sent the nodes out for immediate biopsy while he started the bmx. By the time he was done with the bmx, the "quick" biopsy results were back and the PS proceeded with reconstruction. If your nodes are involved, or if the tumor is close to the chest wall and clean margins are in question, you'll probably need rads.



Also consider how you think you'll feel after surgery. Immediate reconstruction is harder on the body. If you are a fast healer, like me, you'll be fine. I am back to work part time and doing great in spite of still having one drain. On the other hand, I have a friend that had bmx with immediate reconstruction who is still sleeping in a recliner and recovering alot more slowly. Everyone is different. Try to get a feel for how you think you will do.



I don't have answers for chemo, as it (thankfully) didn't apply to me. However, I think only a MO will be able to answer specific questions for you.



Did you have rads the first time around?



I think you're smart getting a second opinion. Don't try to make a decision whether or not to switch until you've met with both. Once you do pick your team, don't look back. And yes, it's ok to pick a different team than the first time.



Is there any family member or friend that you can talk to, then have go with you? Please, rethink going alone. I did not have the opportunity to go to my tumor board meeting, and maybe that was better. I got feedback from one of my docs after the meeting, thou I wish I could have been there to get a better understanding of everything. If you must go alone, take a recorder. You'll never remember everything, and with a recorder at least you can play things back later. I wish I could go with you...



Good luck, and keep in touch!

Anonymous

Also, I will add this thread to my faves so I'll be watching out for you.

rozem

2timer

we cant answer many of these questions because they will be specific to your situation.  The only advice i will give is to get second opinions when you are not comfortable or not sure of treatment/surgery etc.  I know it seems like everything needs to be rushed but take a breath and evaluate the situation and your options, take someone with you to help you keep it all clear.  I know having low grade DCIS is not the same as IDC and yes, it is scarier.  You have an early stage cancer and the odds are in your favor that you will do treatment and be fine -

good luck

Maureen1

(((2timer))) so very sorry this beast has blindsided you again...I'm Stage II and I've been thru lumpectomy, axillary node dissection, chemo and mastectomy with immediate reconstruction, now I'm on Aromatase...if I can answer any questions for you please feel free to send me a message...so many decisions to make and having to wait for the information you need to make them...this is a tough time, I hope your pathology is good, I'll keep you in my thoughts and prayers (((Hugs))) Maureen

Aruba

2timer,

A fellow buckeye here sending you a hug...What part of the state are you in?  Sounds like you are surrounded by good Dr and top notch facilities too.  Looking for a silver lining..if this 2nd dx is different primary from the first, the reason you may have found it so quickly is due to dcis dx.  By being so diligent and keeping up with exams, you have found this earlier than you may have and can kick it's butt.  No one thinks they are going to get this crappy disease once let alone twice.  You are well ahead of the game by knowing what may be involved, what you have to research and that you will need to have your gameface on to fight this.  Will be checking this thread for updates on your finding out what is what and putting a plan in place.  One step at a time.....

slickchickie17

We are happy to help you as much as we can, but right now you don't have enough information to make any decisions. I can tell you that you won't know what stage your BC is until after surgery (pathological staging). You may be given a clinical stage, but this is not precisely accurate & won't include a sub stage. Meeting with your team of doctors will give you answers to many of your questions & will likely create more. Be sure to write them down & don't be afraid to get clarification on anything you don't understand. If you have to go to your appointments alone, bring a small notebook to take notes!

Anonymous

2timer~~I can promise you, that you're going to the best cancer center in central Ohio. (The Stephanie). They will take excellent care of you there.



I have an appointment there for rads at 3:00 on Friday, but I'd gladly accompany you to your appointment as long as it isn't the same time as mine. I know the best routes to get there, and I'm familiar with much of the staff. I'd be delighted to just sit with you and be your encouragement.



Blessings

Paula

DeborahC

Hi 2timer,  I also had a 2nd cancer that was not found until stage 2.  Sometimes these things just don't show up in spite of our monitoring.  I also had previous radiation.  The fact that you did have rads will limit your treatment options (which in some ways makes it easier as you do not have to choose).  I had a mastectomy with sentinal node removal (clear), low oncotype score and therefore no chemo.  So it wasn't that bad - just the surgery and now tamoxifen.  Ironically, I have watched my earlier stage friends go through far more.  As everyone said you won't know exactly what your options are until you have all of your tests/surgery.  Good luck!!

2timer

A small update.  I did get the final pathology on the biopsy.  I am strongly ER+ and moderately PR+, HER2 negative and my Ki67 is 26%.  I was told that this was "good".  The surgeon basically answered my written questions and then had his nurse speak to me about things having to do with the surgery.  His attitude was simply that he was sorry I got this again but sometimes things like this happen.  If I do immediate reconstruction, I'll have the PS remove the drains (after 2 weeks), then see the BS 2 weeks after that, then 6 months later, then annually.  So in actuality he'll do the mastectomy then hand me off to the PS and oncologist.  I guess this is how things are done but the BS is the one thing I liked most about this breast center and it looks as if I'll be mostly seeing new people since I am DEFINATELY looking for a new oncologist.  

I go to the tumor board today and I'll get tons of information and I'll post more later.  Still bummed about the fact that I cannot get radiation (had it the first time) and that tamoxifen failed.  

GoWithTheFlow

I will keep you in my prayers 2timer!

Anonymous

2timer, It appears that the tamoxifen failed for me too, since I got a second tumor less than year after the first. Unfortunately for me, this means a hysterectomy or oophorectomy followed by a change from tamoxifen to a different drug.



I've got you in my prayers. Keep up the positive attitude.!