Age 33 got final path and stage IIB...need advice

Jenna....What your physician told you is TRUE.  You have early stage breast cancer and like all of us early stagers, you SHOULD plan on a long life.  Right now you are wrapping your mind around the size of your tumor.  What's more important is the biology of the tumor and what treatments are available to you.  There are many patients with advanced cancer doing well after many, many years and sadly, there are some like our dear Marybe (may she RIP) who recently succumbed after being diagnosed with DCIS nearly 20 years ago!  Now I'm going to tell you the BEST news from what you've described so far.  First off,with younger women like yourself, it is more likely with a tumor as large as yours to be lymph node positive.  Although you are technically lymph node positive, having "micromets" and having a 4.5 cm tumor, tells us that it might not be too aggressive.  When I was diagnosed with my type of rare breast cancer, I looked through the literature and found a patient who had a 17 cm mucinous tumor and was lymph node negative and did well.

While you are waiting to hear what the tumor board recommends, I suggest that you go to the NCCN's website and look at the professionals version of the 2013 breast cancer treatment guidelines.  When you register (it only takes a moment) look for the professionals version...NOT the patients version.  The professionals version has way more information!

I wish you well!

http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Only the invasive part of a tumor is considered...NOT DCIS. The invasive part may indeed be smaller. Mine was supposed to be 2.5 cm but after surgery  the INVASIVE part was 1 cm. Tend to agree that your tumor doesn't sound "aggressive" but look for LVI in the details, ER/PR, Ki67, Her2 (+ or -) which should give you the whole picture...

Jenna - I'm so sorry . I know how disappointing and devastating a "reversal" of opinion can be. My good friend found a lump "as big as a peach pit", had Mx, full chemo and is cancer free 16 years later. She was 35 at diagnosis. Don't go anywhere in your mind you don't need to go. Big hugs to you.

Jenna, hello. Fellow stage IIB-er.

Size is scary - I have "been there." 3.4 cms in breast and one of my nodes as 2.5 cms - I still have the image in my mind of my onc giving me that piece of data in his unsuccessful attempt to get me to do chemo.  

You may want to consult a second opinion regarding chemo if you are 100 percent er-positive. Hormone therapy may be better indicated. Chemo in your case is more of  "just in case" systemic treatment. You should bear in mind that "throwing everything at it" is not necessarily the best course and may -or may not-- be more damaging than healing. "Throwing everything at it" is old thinking in cancer that the evidence is increasingly calling into question. Increasingly, targeted, personalized approaches are preferred when possible.

The size of your tumor and the role it plays in staging does not necessarily indicate prognosis; staging is not the panacea. Rather, tumor GRADE is important; the higher the grade, the faster growing the cancer and the better the argument for "quicker therapies" (and this could argue in favor of chemo in the minds of many oncs).

Radiation: you may be a borderline case, and the risks you mention are absolutely there, though technology has improved and most people experience no long term lung or heart side effects. I suggest you find out how close to the chest wall your tumor was before making a decision. It might not be worth your while and could complicate reconstruction efforts.

There may be a recommendation of aggressive hormone therapy - such as the removal of your ovaries plus therapy with an aromatase inhibitor for about a decade. I strongly recommend that you try reversible, shot-term estrogen suppression first to see how you do. An option is Lupron. If you do well and can tolerate the side effects, then you may be considered a good candidate for ovary removal.

My final bit of advice - read my signature - don't make too much of statistics. They are a valuable tool and have a place in your decision-making, but remember this: your chances of getting bc in the first place were minute - why on earth would you be in the majority of other statistical considerations? Remember, too, that statistics cannot be used to say anything about individual cases - they are intended to make epidemiological statements about groups of people who may or may not share key characteristics with you. What is best for you, the patient, is more likely than statistics to be what is worst for the cancer cells in your body.

Remember: the good physician treats the cancer. The great physician treats the patient.

Best of luck!

Hi Jenna, did you ever get an answer about how much was DCIS vs IDC?

As you and others have said, the DCIS part 'doesn't count' for staging. I did not know this initially, so Mum's scan results of a 5.8cm tumour were very scary to us, even though she knew part of it was DCIS. The little booklet we were given on early breast cancer only talked about <2cm, 2-5cm, or 5cm (no 5cm+), so I assumed she was off the scale! 

Was such a good day when the surgeon explained that it was actually considered a 2.8cm IDC and or whatever the scans indicated .

Ended up being 2.2 of IDC and 6cm DCIS on surgery path results. So a little smaller again.

Another thing that surprised me was that it wasn't a round lump. More like a stick with a knob on the end, so she actually had no idea how big it was, and was probably just feeling the invasive part, not the DCIS part. 

A lot of it is psychological rather than anything else (sounds like it wouldn't affect your staging), but these little bits of "good" new are comforting. Can't believe your surgeon didn't check and you had to chase up this info yourself! Maybe cos it doesn't affect her treatment plan, but still!

Anyway, I hope you are doing well now the treatment is underway. xo

Oh sorry - Mum's chemo brain must be contagious - I didn't notice your April post was a year ago!

Glad to hear you're out the other side of chemo, and blasting any little sneaky cells with the big guns!

Thanks about the DCIS IDC combo info- that's comforting. It's grade 3, HER2+, so I look for all the reassurance we can get - like how awesome herceptin is.

All the best!!!