TRIPLE POSITIVE GROUP

robinlk - I was surgically post-meno at diagnosis, so started on Femara - had joint pain, weight gain and trigger thumb, switched to Arimidex, had less joint pain, did not lose weight, triggers dissipated - but after a year developed triggers and a swollen knee - still no weight loss despite trying. Switched back to Femara, different manufacturer, and started an anti-inflammatory diet. Dramatically reduced joint pain and lost 22 pounds - weighed less than before diagnosis - yay! The diet has made a real difference in both the ability to lose weight (I had previously tried exercise 5 days a week and 1,200 cals - couldn't move the scale) and the joint pain - it is a hard food plan due to the elimination of so many things, but I am gladly trading them for a better daily pain situation and staying on my AI.

Hi.

Brand new to this group. Happy to have found you and to have the opportunity to talk with and learn from others. I'm a 43 yo mother of a 2 year old.

I found out my diagnosis last week. Biopsy last Monday. Results back on Wednesday. Appointment with breast surgeon, oncologist, blood work and an MRI on Friday. On Friday they also shared that I am triple positive. Tough to understand the implications of that at this time since there's still so much unknown about my situation.

My mammogram was clear but they saw a single enlarged lymph node (left) - that's what was biopsied. Carcinoma. Yesterday they gave me the MRI (with contrast) results. The previously identified lymph node lit up (but none of the others), but the rest of the left breast appeared clear (occult?) They did see something small in the right breast via MRI. So now they are going to do a biopsy of the spot on the right breast via MRI next Monday. They are hoping that by doing it with MRI they might get another look at the left breast at a different point in my cycle.

I also will have a PET scan this Thursday. Really hoping that it's not found anywhere else. The breast surgeon felt the enlarged node and said it felt "mobile" and not matted - which reduces the likelihood that the cancer has spread from that node.

Anyway - I'm still in limbo and it's scary that they didn't find the primary in the left breast. I'm really hoping the PET scan will shed some light and that the spot they plan to biopsy in the right breast is not cancerous.

I'm definitely going through my days as if none of this is going on. My son has been sick with an ear infection. Work has been busy. I guess it's been a good distraction to keep busy - though it makes it all the more surreal. My husband and best friend know what's going on, but I haven't told my family or anyone else. I have a VERY anxious mother, so I really don't want to tell her until all the tests are in and we're close to a diagnosis. She will drive me crazy if I tell her while I'm going through the testing process - especially with so much still unknown.

Did any of you get a second opinion about treatment after all of your tests were in? I was thinking of sending my test results and films to someone a friend highly recommended who treated her BC at Johns Hopkins to see what treatment they recommended.

Any others with an unidentified primary?

Welcome edwsmom - you know I was going to type an exclamation point there, but this is nothing really to be excited about is it?

I would recommend a second opinion. I got a second opinion on my pathology and as it turns out, it proved the first diagnosis incorrect. I would have missed out on tamoxifen as it showed me er/pr negative initially.

After that experience, I flew to Sloan Kettering for their rad/oncs to review my case before I began radiation. And again, I was glad I did - it changed my mind about what my course of action would be. My insurance pays for 2nd opinions. These are big decisions. You have the right to feel secure and informed in your decisions.

The beginning of everything was the hardest time for me. I just kept going through the motions of day to day life. It definitely helps to stay busy. And know that things will get easier in time.

Thanks Geewiz and SpecialK!

I do think I want to get a second opinion.

How do you determine which are National Cancer Institute centers?

http://www.cancer.gov/research/nci-role/cancer-cen...

See if that works..

Too funny SpecialK.

I will add, that I started out at a NCI hospital... Appointments that ran HOURS late for chemo. HUNDREDS of people sitting around me during treatment. I mean, what a zoo. My doctor actually called me by the wrong name after about 4 treatments. WOW

So afterwards I switched to a doctor I LOVED. Treatment is really standardized. Get it from a place that you are comfortable with.

I WISH I had known SpecialK!!! ...with a Stage 3 diagnosis, I was terrified. I guess we all were, though right? I did not know where to turn in the beginning. So I figured, the NCI was best. Now I understand that herceptin is herceptin, no matter where you get it. My center took me almost an hour and a half each direction...and the experience once there was terribly stressful. Just an assembly line of sick people. My sister is a doctor and had been pleading with me to go see this one oncologist (head of a HUGE practice here). The second he saw me, he walked in, smiled and took my hands and said "You will be fine". His entire manner and demeanor completely changed my attitude. Some doctors are healers. Then when I saw his chemo room with I love Lucy movies and Carole Burnett reruns with fresh flowers and warm blankets everywhere...I was so sad that it could have been SO much easier for me. BUT, I did finish herceptin overlooking the fields and watching the sunflowers. Gamechanger.

I was scheduled for surgery and cancelled the day before it because my second opinion advised neoadjuvant therapy. Then I saw the oncologist and got scheduled. This made sense to me and allows me to qualify to get Perjeta. It was hard to delay my start of treatment but I finally had my first chemo yesterday and feel like I am making a step in the right direction. My insurance paid for it.My daughter was born (obviously not related to the cancer years ago) at a center/teaching hospital where they have a cancer center that is highly regarded. The atmosphere at the hospital did not suit my comfort level so I would personally not consider it. My current hospital is also well regarded and I have loved the ambiance and atmosphere and think I am getting similar treatment.

I too wasn't treated at an NCI center. The of top 3 places IMO in the city of Chicago only 1 wasn't an NCI center but the reputation of the BS and MO with the MO's area of study being HER2+ since the 90's it was the right choice for me. My neighbor who was diagnosed right after me, triple positive, Stage IIIB also had the same team. She too is still NED.

SDCA76 I would have done the same thing if Perjeta was offered back then. I even asked about getting chemo first but was told for big tumors (and thinks to self, mine isn't big?)

Thanks everyone!

I had a good cry last night. I think I'm most scared of two things - the impact this will have on my child (2 yo) and the impact of the treatments on me/my body.

I'm still in total limbo so I have no treatment plan and a potential occult cancer. PET scan tomorrow morning. Second biopsy/MRI on Monday. Then maybe there will be some idea of where to go.

Edwsmom, I hear you about the good cry. Most of yesterday was my good cry.

I finally put a call in to the doc. I can't keep feeling this anxious and almost-depressed--it's just not me.

In the wise words of an old friend of mine, "this too will pass like a kidney stone." But, in the meantime, I'm sucking up my pride and asking for help with my crazy emotions.

edswmom and Kate,

There's no shame in asking for some help, either from a counselor or from your MO, who can prescribe you anti-anxiety meds or antidepressants. I have anti-anxiety meds for emergencies, and take a daily antidepressant. I was never a med person before but I am now.

Hi rozem,

I would take the job. If you've been contributing to Social Security, and you get diagnosed with Stage IV cancer, you automatically qualify for Social Security disability. Once on Social Security disability, you can qualify for Medicare.

I love having a flexible job; I think you will too.

Best wishes!

**** OOPS -- just saw you're from Canada. You'll have to check with the Ontario/Canadian policies on long-term disability!

ElaineT - thank you! Iooked in to our retirement plan here in Canada (CPP) and yes I would qualify although you don't get much.

TonLee - Welcome back!!!! so nice to "see" you here. Good point on the stress...this job is way more stressful not in terms of the job itself but being corporate. I have zero flexibility, 1.5-2hr total commute time per day, only 3 wks holidays (with no hope in hell of getting 4 for 10 years!!!!) my QOL would be so much better because I can work from home 2-3 days (no commute -yay!) and they cant really tell me how many holiday days to take b/c Im a free agent. So all that equals less stress

Mommato3 - thank you! flexibility is the key here, I seriously feel like there should be bars on my office window...I hate that trapped feeling.

I just heard back from the private insurance provider and I cant apply until Im 7 years out from diagnosis which is in 3 years! This cancer thing is the gift that keeps on giving...