DCIS HELP NEEDED -- I'm just thinking...

[Andrea Barnett Budin]

Hi my wondrous knowing group of Soul Sisters!

I have a dear friend who was dx DCIS. She has had 2 surgeries. She saw an oncologist following the surgeries. This alone alarmed me. I planted a seed and backed away. She felt she was in the best of hands (through Albert Einstein in NY). But, I keep thinking...

I have asked Sandy about sentinel nodes and HER2, of course. She says her onc says they only test those when the ca is invasive.

She is having radiation and going on Tamoxifen (which wasn't foreseen w/the first surgery, which they thought would be the end of the story).

I would appreciate any one who could assauge me or inform me re this bc. I need to tap into your wisdom. I feel unusually uncomfortable and just plain distressed. I love my friend dearly. My Inner Voice is shouting at me!

Is this the common course of action? NO testing for nodes or HER2?? It doesn't feel right to me. In fact, it feels irresponsible.

I, like all of you, have heard and read too many tales that indicate this should be *on the table* from the getgo. The better to treat and foresee! WHAT DO *YOU* THINK???? Talk to me, please... ANDI

[naturaleigh]

Hey Andi,

I am DCIS but also HER2. They found my HER2 with the pathology report from my surgery. My surgeon was not the one to tell me about the HER2, my onc did. I had a mystectomy with 4 rounds of AC, 3 months of Taxol and the year of Herception and the 33 rads.

Personally, I do not feel that I should have gone through radiation since my lymph nodes were totally clear, but the onc said that would up the odds for me to make it to my 5 yrs without a reaccurance.

Something I really wish I did, and I suggest to her, GET A SECOND OPINION!!

My thoughts are with her.

Anita

[Andrea Barnett Budin]

Anita, I really appreciate your taking the time to respond to my distress call. I have urged Sandy to get a second opinion. Even a third! (I actually had 5. My husband said to me, I don't mind, but when do we stop?) With each wonderful onc came a little bit different spin, something to add to the mix, to make me think and reflect.)

I also have read that we should get 2 pathology reports. Surely when I was a *newbie* I didn't have the wherewithall to think of such a thing. I was reeling. And, my sweet Sandy thinks she's in good hands and needn't give matters a second thought. I keep gently nudging.

My present onc looks back at my 12 yr old pathology and is surprised that I am ER/PR- AND HER2+ w/ILC. Very unusual, "if you are" he says, doubting the report. Wish I had a 2nd opinion. Not that it really matters at this point, but I'd like clarification and no doubts or wondering.

I have noted that those who had the radiation fared well and have questioned my not doing it. It was suggested as something to think about after the chemo. After the chemo, it wasn't addressed again and I guess I didn't want to bring it up or pursue it. I felt I had had it. Then, I recurred.

My friend Rochelle was dx 4 mnths after me. She had chemo and Tamoxifen and actually did Tamox for 6 yrs, sure it was keeping her alive and afraid to let go. She stopped in '01 and is fine. I'm having dinner w/her and her husb tmrrw. Hope you have as good an outcome, w/all yr insurance (chemo, radia, Tamox). Sending loving energy full of wellness to you, Anita. You're a sweetheart for hearing my call. Thank you so much... ANDI

[penelope]

I was diagnosed with dcis at biopsy and only after surgery did they find the 7mm idc. They took sentinnel nodes on both sides even though my right breast was profylactically removed.

I did get several opionions on the biopsy which said that it was high grade dcis, but would not have had any treatment if they had not found the idc.

I only recieved chemo and herceptin based on the idc, not the dcis.

I was initially diagnosed with DCIS but because it was high grade, comedo, surgeon insisted on SNB. She said standard of care was if DCIS is high grade, SNB.

Had second opinion who insisted it was IDC, and she was right, although not as larger as she thought.

So, I think it would depend on the grade of the DCIS--do you know if it was high grade?

[Andrea Barnett Budin]

You've given me the right questions to ask. I'm working on it. I don't want to overreact, but I'm feeling my friend is at the opposite end of the spectrum, blithely going along...

At least she's not full of fear. Quite the contrary. Pretty blase. Which freaks me out.

Appreciate your input, ladies. Very kind of you. Thank you. I just love this site and all the wonderful women on it. You blow me away! ANDI

[Alice]

Could your friend be not telling you everything? Perhaps she is trying to save you the anticipation and anxiety that she is feeling. I know I have done this with family members who I felt would be best served to wait until there was something definite. I don't know much about DCIS, but I would think they would do all of the histopathology on it as well.

[Andrea Barnett Budin]

WHEN SANDY FIRST FOUND OUT, she did not tell me -- her friend since 1969. We moved in next door to each other. Me pregant w/my baby daughter Pami, w/ 18 mnth old Ali. We are like family. Sandy and Marvin are Uncle and Aunt to my kids.

I found out accidentally, having called another friend to see how she was (after 3 surgeries for fibromyalgia and complications). She said, You know about Sandy... No. The longest pause ever heard. I was clutching at my bedspread. What's going on? I didn't want to be the one to tell you. It seems no one wanted to tell me. She has breast cancer.

I called Sandy and when I asked why she hadn't called me, one of her best friends who loves her beyond words, she said she didn't want to upset me. (I think I was going through my husband's Shingles, dehydration, passing out, breaking his foot, passing out again, calling an ambulance....). But that doesn't matter. That's what friends do. We support one another in good times and bad. She had wanted to wait till after the surgery to tell me the end result which she was certain would be good.

Well, then they saw more stuff that was questionable and did more surgery. And she has been keeping me posted as I can't keep my mouth shut. Have you seen an onc? No. They don't want to see me until I heal from the surgery. It sounded odd. One agreed to see her. All top docs in NY, I'm in the best of hands. Don't worry about me. I'm fine. Sandy is 10 yrs older than me. I worry. (She had been on hormone replacement therapy for16 yrs. Tried going off when it became a hullaballoo then couldn't take the hot flashes so went back on.) Eats like a bird, fish dry, vegetables dry, fruit, bread, some pasta (mostly dry). Drinks wine. Runs 5 miles a day. Goes to the gym. Health nut. Takes some vitamins. I worry.

I ask questions about the nodes, about HER2. She says she is writing the things I say down and will ask the doc. So the above post is the latest, and it felt inadequate. But maybe I am not up on this as a 4th stage metastatic ILC+2nodes,w/multiple tumors in the liver.

It just makes sense to me to do nodes (from tissue taken already) which I think is something new Jean posted today. To test for HER2 and the GRADE, which Grace and Penelope have mentioned. So, I think now she is telling me everything. But maybe not asking questions. Her husband is a wonderful man, but generally does as his beloved wife says. He isn't asking questions. I seem to be the only one with questions.

Thanks Alice for giving this some thought. It is very kind of you. I feel mistakes are being made. Maybe there are different schools of thought re DCIS. Maybe some are more aggressive than others in checking all possibilities, to be better prepared, to maybe even alter tx. I don't know. I'm asking on this site, because I have so much respect for your accumulated knowledge, your good hearts and your experience. I can think of no better forum to address. I love you all. And wish only good reports, easy tx and NED to every one of you. ANDI

[Alice]

I think you are the best friend that she could have right now! I know it must feel as though she could not confide in you as a friend through this time of need and that is confusing, but it sounds to me like she just wanted to spare you unnecessary worry. Sometimes, eventhough we are there for our friends, they worry about taxing us when we have a lot on our own plates! It sounds to me like she is a good friend to you and you to her. In that thought, keep nagging her! Also let her know that we are all in this together! I had some good news yesterday and I am NED after being stage 3! So let her know that there are a lot of women out there that have been in her shoes.
Alice

[mcgle]

I live in the UK.

If the DCIS is low grade, and there is no invasive component, then the chances are that the nodes won't be tested at all. Indeed, I have a friend who is 17 years out from a low grade DCIS dx who only had wle and tamoxifen - not even rads! She is absolutely fine, and scarcely thinks about it anymore. I am hoping to emulate her ...

Hope this helps.

Mcgle

[Andrea Barnett Budin]

Is that as in Mc Glee? You sure have gleeful news, about your friend, and about you. I wish you NED for many decades to come. In my silly head, I have decided over the last decade that I am on the 50 year plan. We only have 100 years to get Life right. And the only way to appear on the Smucker's jar w/Williard Scott on the Today show congratulating you for being 100+ is to be sharp in mind and well in body, to be sure. Or why bother?

Thanks, McGle for your info. It quietens my heart a bit. ANDI