Crazy Sexy Cancer in Seattle

Eastender - wonderful news on your MRI - I can imagine that you are breathing a huge sigh of relief.   Great way to start 2010!!!!

Everyone - have a wonderful, safe, joyful New Year's!  I can't wait until 2010!

hi everyone - new to this group, unfortunately.   i've been diagnosed with idc with a cystic component, 2.4cm (including the cyst), 0/5 nodes, er+/pr+, her2-, grade 3.  my lumpectomy came back with clean margins except on one side there was only 1mm clean so my surgon is going back in on monday to take out a little more tissue. mri showed no hot spots, nothing in the blood work. so it seems we caught it early - which honestly, i thank the cyst part for, even if it has the most aggressive of the cancer cells in it, because without it, i would have never noticed the tumor.  i'm only 37, and the tumor mass itself is really small, but they count the cyst in the size. 

 i go through good days & bad days, numb to optimistic.  i saw my oncologist (i'm at swedish) on wednesday too, and he sort of sucked all the optimism out of me.  he's really pushing chemo aggressively, making me feel like if i don't do it, then it will come back & i'll die sooner because even though everything is clear, i'm a grade 3.  i haven't decided what i want to do yet.  the onco typing hasn't come back yet.  i had resigned myself to radiation & tam, but have never been a fan of chemo - i can't imagine pumping my body full of poison for "a just in case".  i'm waiting for the onco to really make a decision, but i'm feeling really discouraged after talking to my onco.  i feel like he's not giving me any positives, just negatives, unless i do the chemo.   

thanks tina.  my onco is apparently highly respected and very well liked, but sometimes i think he's very "chemosentric".  he seems to be very fixated on the fact that my tumor is grade 3 - it scored 9 out of 9, but everything else is clear & clean.  he wants me to do 8 cycles of the most potent aggressive chemo cocktail, and everytime i bring up different options or questions he doesn't necessarily dismiss them, but brings it back around to the most aggressive chemo option. he's probably seen things i haven't, for sure, but sometimes i just feel as if he's not giving me all the information on any other option.  i know that people who have been diagnosed as i have that have only done radiation & tam that have gone on to live long long lives, and are still living.  but i also know a lot depends on the onco typing as well.  i'm just having a lot of anxiety over this decision.  i have such a hard time with the thought of chemo - it's poison. they pump our bodies full of poison.  and yes, it *may* kill the cancer so it doesn't come back, but it may not.  there is no guarantee.  and i have a hard time with the idea of poisoning myself at the expense of the "maybe it got out there" of my case.  as it stands now, they are saying no lympathatic or vascular, so i'm just having a hard time reconciling myself with his hard line of if i don't do chemo i will probably be dead in 10 to 15 years just because my cancer is a grade 3.   i just need to stop thinking about it for awhile until the onco type comes back, it's depressing me to the point that i just don't have any interest in anything at the moment.  it's pity party for one time. ;p

JS - welcome - sorry you are here!  I also recommend discussing the oncotype test - Tina - I don't know why you didn't have one (lump vs. mast. doesn't go into that equation).  I am wondering if oncotype is for tumors less than 2cm ????  This is just a  guess - I would push for it anyway.  I know of women on here with grade 3 that had lower oncotype scores than I had with a grade 2.

That said, like Tina, I kind of had a choice regarding chemo - and did it.  My oncotype was in the gray area - and I have relatively young kids at home.  The fact that you are 37 would make most oncologists chemo happy - I was treated "young" by the oncologists I saw and was 44 at diagnosis.

My cancer team is at SCCA - I have 3 bc friends with a male onc. at Swedish - Dr. K?  They all really love him - also had chemo, but had different stats than yourself - either positive nodes or her2+.

Hope everyone had a good night last night - back to cleaning out my closets - heading to Snoqualamie tomorrow!

edited to add:  I just checked on line and oncotype is for stage I/II node negative er/pr+ cases so 2cm tumor should not be an issue.  I know of women that have 1-3 positive nodes that have had it too so I would really push for it - it will give you more info. regarding your recurrence risk.

well, he's right about the radiation - when they or we address recurrence -they are talking about systemic recurrence - not local (in your breast).  Tamox. should help you.  I was told (with the oncotype dx results) that I had a 25% recurrence rate with just lumpectomy/radiation.  Tamox or A/I brought it down to 15% (I think) and then chemo cut that in half. 

I had two opinions.  One at Virginia Mason (where I was diagnosed) and then at SCCA.  The women I know that go to Swedish have either Kaplan or Rinn.  I think all the docs there are good.  My onc. is Dr. Ellis at SCCA.   I wonder if you are clear that you really need a 2nd opinion it will be easier to get into an onc. there?  I had a hard time getting into SCCA initially.

I seriously would push for the oncotype test - that will give you more info - for or against chemo (or if you are like me - you will be in the dreaded gray zone..  That test takes a few weeks to get back - so that will give you some time to get a 2nd opinion lined up. 

Trying to get appts. between xmas and New Year's is not easy - last winter I was just WAITING for my oncotype, and my onc. appt. had to wait for that and my onc. to be back from xmas vacation......

js37,

I have following this discussion. My onc is at Overlake.  She showed us a report titled "Shared Decsion Making".  It was generated from a system called Adjuvant online or something like that.  Anyway, they enter tumor size, grade, ER/PR status, nodes, etc... and it gives you bar charts (and numbers) that show how many women are alive and cancer free in 10 years, how many have a "distant" cancer, and how many will die of other causes.  There is one of these charts for each treatment option: lumpectomy and rads or mast only, hormone therapy after surgery, and chemo after surgery.  This really helped lay out the odds. 

 For me, I had a 42% chance of a distant recurrence without chemo and 22% with chemo.  I don't like the 22% but it is much better than 42%.  I am triple negative and BRCA1+ so the odds are really stacked against me and hormone therapy is not an option.  I really didn't have a choice but I understand the difficulty with having to make these horrible decisions.  Once I found out about the BRCA1+ status, I had to decide if I would continue down the lumpectomy route or Bi-Mastectomy.  I chose the BMX with delayed reconstruction (after chemo) and am happy (all relative) with my decision.  I felt I needed to do everything I could get rid of the cancer.  This time next year, I hope to be done with all the treatments, reconstruction, and oomph and go back to not having to think about cancer every day.

Good luck with your decision.  It sucks to have to make these decisions!

Lorrie

thanks jessica.

 i do actually like him, and i do believe he is incredibly knowledgeable.  i think i'm just one of those patients that needs more information - as in i want to know the whys and whats and short & long term side effects and benefits of ALL possibilities so that i can then sit down and weigh the pros & cons of each.  in order for me to feel informed enough to make a decision, i need to feel as if i'm getting all the information explained to me in a way that is like teaching me about whatever treatment they are advocating.  i'm probably not his usual patient. ;p i was saying to someone else, that i need it explained to me as if i'm a 1st yr med student, with that sort of detail.  my question is just that i've read tons of literature that says in my particular type of dx, that it benefits more from hormonal therapy than anything else, but who knows, that's just what i find on google.  

so i'm going to wait for the oncotype to come back & see what it says.  depending on that, and what the % difference is between hormone suppressive therapy alone  vs. with chemo, that's how i'm going to make my decision.  i did one online calculator and the difference for me was only 3%, so that's not enough for me to do chemo - so that oncotype score is going to come into play once we get it.   i told myself i'd do chemo if the lymph nodes came back positive, but they are clear, so now i just feel like everything is this huge up in the air, who knows how it will go.  i need to definitely let it go though until we get those back because it's been affecting my day to day view on life & by nature i'm a very optimistic person, so when i'm feeling depressed it sort of spirals into more days of feeling down and i hate that.  

chemo is such a hard decision.  it's hard for me to knowingly consent to poisoning my body to the extent in which it does just for an "in case", so i think the oncotyping results in addition the percentage # from the calculator is going to be what i really need to make the decision.  

 everyone has been so helpful, thank you.  

Jessica - so great to hear that you are almost done with radiation - that will be such a relief - and I can imagine you are burned to a crisp.  It was amazing to me how quickly that burn faded - still kind of tan from it, but I was in serious pain and that faded fast.

I am kind of sad that the school break is over - I really should be happy the kids are going back to school but I am enjoying the lack of a serious schedule!  Enjoy the rest of the weekend!  Did anyone happen to catch the blue moon at midnight?  Beautiful!  I think the sky cleared up over Bainbridge just in time for us to see it.

Aprilgirl - I too am sad that break is over.  Usually, I am ready for everyone to go back to school and work but not this year.  I think part of the reason is that it means that it is time to start chemo.  I have done a great job to keep a positive attitude and really wasn't nearly as emotional as I would have expected when I had my bi-lat mastectomy.  Yesterday, I got teary when I thought of going in for my port surgery.  Why would that get to me.

I have been feeling good physically and started to go to the gym and walk after Christmas.  I guess I overdid it.  Last night, my right breast area started to hurt and by midnight I had a 102 degree fever.  I felt like my breast was getting bigger and sorer by the minute.  I was either freezing or burning up so I didn't sleep much.  I called the doc this morning and went in to be drained (170cc out of the right and I just had 110 cc removed on Wednesday).  She said that I had an infection and am now taking antibiotics.  The fever has gone down to 100 but I amazingly sore even though I am not nearly as "full" as before.   She told me to refrain from excersizing until I heal some more.  I have to go back in on Wednesday to see if I can have my port surgery on Friday and begin Chemo the following week.  I guess this is something to be expected.  Bumps in the road.

Hello ladies! I hope everyones holidays' were wonderful! Take care! -Amanda

Cindy - I do not know anything about your legs swelling - hope it is getting better and your onc. find a reason why!

JS - that sounds great!  I wonder who you will be seeing at SCCA.  A second opinion and the oncotype should give you the info that you need.

Hi Amanda!

Good eveing! It has been a while since I have been on here. I am from the other side of the state, but just wanted to say hi!

LITTLEBIRD.....Where are you receiving your treatment?  The Providence Regional Cancer Partnership in Everett has massage therapists and acupuncture and naturopathic care to help with side effects from chemo.  You might benefit from a light massage to help drain the lymphatics.  The Cancer Center there is phenomenal.  They have the newest building and equipment in the entire Puget Sound area.  My oncologist was formerly associated with Fred Hutchinson then moved to the Everett facility when they opened two years ago.  I was on supplements from the naturopath, received acupuncture and massage throughout my TC treatment and did really well with very few side effects.  Even if you are not getting chemo there, you could use the integral therapy people and would be close for you in Arlington.  Patti

JS - I think you'll like SCCA.  I went through Swedish - and was very happy with my surgeon and onc (Dr Rinn), but went to SCCA for a second opinion before having surgery or making other decisions.  I found the folks at SCCA VERY good with providing a lot of information, including references to relevant research, etc.  They ultimately made the same recommendations as I'd gotten through Swedish, but it was very helpful to get that extra information (which i went home and looked up afterwards!)  They even make an audio tape of the consultation so you can take it home and listen again.

Like I said, I was happy with my docs at Swedish and especially appreciated the high level of customer service (for example, the nurse in the surgeon's office made ALL of the other appointments I needed prior to surgery - with onc, rad onc, plastic surgeon, MRI, etc - before I ever left the office after my very first appointment).  But the consult with SCCA gave me more confidence with my decisions.

Good good luck to you, whatever you decide.

Linda

PS:  Dr Fer and Dr Rinn were the 2 oncs at Swedish who came highly recommended to me from several different friends and contacts in the medical community.  I've never met Dr Fer - but Dr Rinn is a great listener, for what its worth.