new DCIS diagnosis

yogamom2 · December 2018

Hi all, Just diagnosed via stereo-tactic biopsy w HR+ DCIS, found on mammo as small linear micro-calcification cluster. Right now head is spinning.

Suggestions appreciated for specialists/surgeons in the NW Phila suburbs (bucks/ mont) and any questions I might not think to ask during consult.

Doctors/ hospitals to avoid would be equally helpful. Thanks.

Moderators · December 2018

Yogamom, welcome to Breastcancer.org! We're sorry you have to be here, but glad you found us!

We're sure others will offer their experiences and advice here soon. In the meantime, you may be interested in checking out the following topic created by Beesie:

A layperson's guide to DCIS

We hope this helps, and we look forward to hearing more from you soon!

The Mods

yogamom2 · December 2018

Thanks, Beesie was the first thread I read upon joining. I am also a "research junkie" but, since my diagnosis is completely new, it's a lot to absorb.

Right now my focus is finding the right doctor and the right balance to avoid both over & under treatment. Appreciate any guidence this forum might provide.

alto · December 2018

Some ways to find your doctor: check out the highest ranked hospitals in your area, check your insurance company's website to see potential providers, ask your primary care doctor for a referral, ask you friends, family, and anyone else in your network if they know someone who had a good experience (see if any of those doctors are covered under your insurance). Many of the good hospitals seem to be leaning toward BCS. In my experience, they sometimes let you decide your course of treatment from the acceptable options they identify.

Good luck with everything yogamom2.

Unsolicited advice: You may need to balance the research junkie in you with 1) fun distractions and 2) trust in your care team.

yogamom2 · December 2018

Thanks. All advice welcome. Being the holidays, fun distractions abound. Not much of a worrier, just a planner. Finding a care team to put my trust in is what I'm looking for. Have first surgical opinion/ consult on Monday. Found a possible 2nd opinion but can't be seen til 12/20 and they send pathology out for "2nd look" review, which they say takes 7 working days- maybe longer with holiday schedules.

Have been reading about genomic testing for DCIS to assess radiation needs and reoccurance risk.. Does anyone have experience with this? Is it standard tx or must it be requested?

Thanks again

Socat · December 2018

Hi Yogamom! I'm sorry that you're here but certainly glad you found the site! I was diagnosed with DCIS a year ago. I've had a lumpectomy, sentinel node removed, 2nd surgery to remove some of the questionable margins left from the lumpectomy, 36 radiation treatments and am now on tamoxifen. All of my doctors and treatments are through Main Line Health - Paoli Hospital for the surgery and all my docs are there too. I have been treated great, I love Main Line Health! My surgeon was excellent, although my husband and I didn't really care for his bedside manner (nothing bad, just a little too relaxed and carefree for our tastes), Dr Chang is my radiation oncologist and Dr Rastogi is my oncologist, both of which are great! They take their time, answer questions, give advice, talk to you in english and not doctorspeak lol.

I had the BRCA 1 & 2 done, all of which came back negative and put my mind at ease. What I thought was great was they collected the samples, sent them off, then if the insurance wouldn't cover, they would call me to see if I still wanted it done. Thankfully insurance covered because I was under 50 years old at diagnosis.

When it came time for radiation, the surgeon suggested doing balloon radiation where a "balloon" is inserted near the spot in the breast where the DCIS was and I would go for 7 straight days I believe it was, have radiation inserted right into the balloon through a port and after the 7 days, I'd be done. The radiation oncologist wanted traditional radiation because of questionable results with my nodes.

All that is over with now, now I just take tamoxifen for the next 5 years due to my DCIS being estrogen & progestogen receptor positive which means my tumor fed off of my hormones.

Good luck with everything and please keep us all posted on how everything goes!!

Cathie

PS: I have to admit that I too am a research junkie and have been in the medical field for over 30 years, sometimes too much information is too much - just be careful where you get your info and what sites you use - this site is incredible, such a vast amount of knowledge here, plus this forum is amazing! Hearing from actual women that have gone through what you're going through is sometimes better than anything else anyone can offer! Also, whatever hospital/physicians that you end up with, ask about a Unite for Her Wellness day in the area. My surgeon signed me up for one a month after my 2nd surgery (I think you have to be invited by your care team in order to attend), and it is truly amazing! The founder, Sue Weldon, had breast cancer and realized there wasn't anything out there for the total woman going through this so she came up with Unite for Her (they are on Facebook and have a website) which provides programs for breast cancer patients (like yoga, reiki, acupuncture, and a whole slew of things!) They do fundraisers all over the Philadelphia area, have runs and walks to raise funds, it's really awesome everything they do! Check it out!

yogamom2 · January 2019

Thanks Cathie, I had several suggestions for a particular board cert breast specialist/ surgeon locally. Surgery scheduled for next Tues, Jan 8. Wire guided lumpectomy with wide margins. Pending pathology, if all margins clear, may not need radiation but will keep your protocol in mind if I do. I really like the idea of localized, targeted treatment and yes I am very careful what sites I gather info from. We have a Gilda's club locally and I stopped by a Reiki share there this week. My surgeon/ hospital also participate in Unite for Her and I will definitely be interested in checking it out post-op. Thanks for your support. Much appreciated

PS. I will need follow up with a medical oncologist for a hormone blocker like tamoxifen as my biopsy showed both ER/PR + 95%. So any information you're comfortable sharing on your experience that might prove helpful would also be appreciated.

Socat · January 2019

I was started on tamoxifen by my medical oncologist a month after radiation ended. Dr Rastogi started me on 20mg, but within 3 weeks I had gotten 3 severe migraines so she backed me to 10mg twice a day which seemed to work better. I had gotten monthly migraines about 4-6 times a year from the time I was 36 years old until I was diagnosed and started thru menopause. I have recently had a couple of severe migraines, so at my visit last month, she talked about switching me to something else, but if I don't get them often, I may just stick with tamoxifen. I started suffering from some bone and joint pain and bladder urgency (I feel like I'm 3 years old again and my husband always asks before we leave the house "did you go to the potty first?" - I can be in Target for about 30 minutes and have to pee 3 times while I'm there lol!) which she said is normal with tamoxifen, so she's keeping an eye on everything. I also started acupuncture which helps with the bones and joints and other little things that pop up

Good luck with everything! Keep us posted on how everything goes! I'll be thing about and praying for you on the 8th!

yogamom2 · January 2019

Thanks so much for the info and the prayers, much appreciated. So ready to have surgery over and get the final word on the pathology and future needs. Love your decision for acupuncture, hope it helps.

Just FYI, my BS was at a conference last month in TX and mentioned that, depending on final pathology, newer research suggests a Tamoxifen dose as low as 5mg may be protective.

I'll need to run that by a medical oncologist since 20mg has been standard tx, but the BS said she'll discuss that option with the MO's she refers to when I'm ready for that step.

Maybe a conversation for you as well? Never hurts to check. Less "potty stops" in future? Thanks again for your prayers. I'll definitely post when I'm up to it post surgery. Fingers crossed!

yogamom2 · January 2019

Hi all, Had the lumpectomy on Tuesday, 1/8. Doing well so far, discomfort but no real pain. Follow up on Jan 21 to see what the next step will be. Staying hopeful.

butterfly3 · January 2019

Hi, I just joined your club. This Thursday (my birthday of all days) I’m getting my lumpectomy for DCIS, grade 2, ^{HR+. I was just diagnosed before Christmas. My head is still spinning and I’m spending a crazy amount of time online researching. I’m glad to have found this site.}

^{I think the most difficult part so far for me is waking up thinking about cancer during the night, then waking up in the morning thinking about cancer. I wonder if that ever stops. When I realize I’ve gone a few hours without thinking about it, I’m happy with myself. I really don’t want it to define me or change who I am.}

I hope you find a place for treatiment that gives you confidence and support.

Lots of positive energy being sent your way.

Socat · January 2019

Yoga mom,

Yay, glad you are doing well after surgery! Thank you for the info about the tamoxifen, if the headaches persist, I am definitely bring that up to her. Sending positive thoughts and happy vibes!

Socat · January 2019

Don't worry butterfly3, you got this!

I was diagnosed last year, a month before my 50th birthday and had my lumpectomy 3 days after my birthday; it sucks that's how I remember my 50th, but here I am already celebrating my 51st and can't wait to celebrate plenty more!

For me, the fear never really goes totally away, but I remember doing the same thing the first few months after being diagnosed - losing sleep thinking about it, finding myself at work staring off into air thinking about it, watching TV and my husband would look over and see a tear running down my cheek. But then, after surgery (which I had 2, one in October, another a month later) and before radiation, I just made a decision that I was stronger than this beast and that it was not gonna beat me, and I still tell myself that everyday. My husbands aunt, who is 80, was just diagnosed last month with stage 2 breast cancer, she's going through chemo, had 2 treatments so far, is losing her hair already and is not dealing well, so I try and count myself as truly blessed with what I've gone through.

I hope you have an incredibly beautiful birthday! It will be awesome, I believe that! I will say prayers and send positive and happy thoughts your way! You are not alone!

Moderators · January 2019

butterfly3 - Welcome to the BCO community, although we are sorry for what brought you here.

We know the beginning is hard and there's so much uncertainty and fears so please, use this community for support and encouragement. We're all here to help you. Good luck with lumpectomy and keep us posted on how you're doing!

Best wishes,

From the Mods

yogamom2 · January 2019

Hi butterfly3, Sorry you have to be here. What you're describing seems perfectly normal. I went through the same thing, most on this forum probably did too. You have a community here that understands. For me, I think it was almost less about the DCIS, which has a great early prognosis, and more about the lack of control and uncertainty. I was diagnosed in Nov, my lumpectomy was a week ago today and there is still uncertainty since the full path won't be back for another week. We won't know the next step til then and the BS says sometimes the stage/ grade changes with with that report.

It took a while but, I realized the only control I had here was how I dealt with everything. It was/is really hard to do but I made the decision to actively try to only look at the best possible outcome. Sometimes it is a minute by minute struggle but it's been worth it. The 3 am internal monologue is the worst! I use a youtube meditation (there are lots to choose from) for either sleep or healing for the middle of the night worries that I can't shut up. My diagnosis, treatment so far & results next week will be the same whether I spend my energy worrying or not, so that energy is being spent on moving toward healing instead. If the results next week are great, I'll be thrilled. If they suck, I'll deal with it then (and be on this forum a lot more!). Cathie is right, when you look at what others w/ BC are going through it helps put your individual struggle in perspective and you realize every day is a decision to be stronger, stronger than this disease and stronger than the negative thoughts that will wear you down. Sending you hugs and healing for Thursday. We're here for you and yes......you got this!

60notpretty · January 2019

Hi I just joined yesterday. I was diagnosed just before Christmas. Preparing for lumpectomy and radiation. I just need the additional support. Much hugs and healing to all of you.

butterfly3 · January 2019

Thank you for all the positive responses! This forum is helpful already. You inspire me! And many hugs and positive wished to you all.

To 60notpretty, I'm sorry for your diagnosis, but send hugs and positive thoughts back to you.

I walk about 2 miles in the morning and I started doing a Dr. Andrew Weil Self-Healing Guided Imagery session while walking. It is wonderful. I highly recommend it. You don't need to be lying down to do this sort of visit with your inner self. I really need it now because that positive voice drowns out the negative voice that is scared and worried.

As someone mentioned above, I think the wait and lack of control is the most difficult thing. It's not the surgery on Thursday I'm worried about, it is having to wait a week for the pathology to know if I need more...and what treatment will follow. I'm trying to think happy thoughts. You all are helping already. THANK YOU!

Socat · January 2019

Dear 60notpretty,

Let me just start with You Got This! Do you have a surgery date yet? I was diagnosed over a year ago with DCIS, had 2 lumpectomy surgeries, radiation, and am now on tamoxifen for the next few years. This forum is awesome! I first found it when I was diagnosed, but only joined last month. The support, positivity, and just knowing that your not alone is amazing!

Keep us posted on surgery and everything, and send much positivity and many prayers your way!

prektchr · January 2019

hi.I live in bucks county.langhorne .I use comprehensive breast care.Dr.kreisher.She is awesome and so are the others in the practice.215-633-3456.

prektchr · January 2019

I go to dr.krisher.she is great. made me feel very comfortable and I am not a big dr.person. www.comprehensivebreastcare.com.I live in Langhorne,PA.

yogamom2 · January 2019

Thanks prektcher, I had a recommendation for Dr Carruthers, I think in that same practice but it was over a month before they could see me for consult. I chose Dr Angotti at Doylestown Hospital and had the lumpectomy last Tuesday, Jan 8. Doing well. Waiting for hopefully good pathology results at my follow up next Monday, Jan 21. Glad your doing well and love your doc. Hoping for the same.

60notpretty · January 2019

Thanks CathieScott. Just got my surgery date, February 8th. Ready to get this done and over with. Thanks for the support. It means everything.

butterfly3 · January 2019

Hi, i had my wire guided surgery yesterday. The wire is a bit freaky, but quick and easier than the biopsy was. Surgery was a piece of cake becuase I had propaphol (sp?)

Today i am icing and haven’t even taken Tylenol. The ice pack is the best. I hope your surgery goes as well, I think the stress I put myself through thinking about it was way worse than the actual surgery. So try not to stress..though much easier said than done. Best wisges

yogamom2 · January 2019

Hi butterfly3. Glad you're doing so well. I also found ice packs to be my best friend. You are so right about stressing ahead of time, the outcome will be the same with or without the worry. Heal well

60notpretty · January 2019

Hi Butterfly3. I too am glad you're doing well after the surgery. Thank you and yogamom2 for the ice pack advice. I will definitely remember that. Hugs ((())) and best wishes for a quick recovery.

akaverance08 · January 2019

Hi, I am newly diagnosed as of Friday, January 18th. I meet with surgeon to discuss options this Tuesday. I have no idea what to expect. The only thing I was told is that I have DCIS and that it was caught early. No history of any cancer on either side of my family. I am very nervous and there's not much information out there.

Moderators · January 2019

Dear akaverance08,

Welcome to the BCO community. We are sorry that your diagnosis brought you here but glad that you reached out to our members.While you are waiting for responses you might want to take a look at the information on our main site about DCIS. Perhaps some of this information can guide your questions when you meet with the surgeon on Tuesday. Keep us posted on how things go for you and stay connected here.

The Mods

yogamom2 · January 2019

Hi akaverance08, I was given the same news in Nov. Not knowing is the worst but right now you probably know everything your Dr does. I had a lumpectomy 2 weeks ago. Tomorrow I get stitches removed and learn my path results and next step. Nothing is certain until the surgery/pathology is complete and even then there may be multiple treatment options. It's a process, sometimes frustrating, scary & slow. I did a lot of research starting with the DCIS site mentioned above. This forum is wonderful if you have questions for others having a similar experience. We're all in the same leaky boat. Hang in there.

akaverance08 · January 2019

Thank you @yogamom2 and moderator. You're right. Not knowing is the worst and knowing that this is a process is not much fun either. I don't know what I was thinking exactly. I definitely never expected to be here. I am glad to have someone to talk to. I will look at the site. Good luck with getting stitches removed and path results.

yogamom2 · January 2019

Hi all, Just back. Stitches are out. Good news---clear margins! If they weren't clear, radiation would have been a sure thing.

BS says next step is to send path to have recurrence risk evaluated-Oncotype DCIS-DX. Will need consult w/ RO but If risk comes back low enough- may be no RT needed!

After that comes eval w/ medical onco to see if risk is low enough to be safe avoiding long term oral meds like tamoxifen. Hoping to avoid it all!

Keeping positive and focusing hard on that best case scenario. Eyes on the prize. Wishing you all some good news this week.

60notpretty · January 2019

Hi akaverance08,

I too was diagnosed with DCIS. I was diagnosed in mid December and had my pre-op appointment this morning with lab work. My surgery is scheduled for February 8th. Everyone is correct about it being a process. I certainly was not expecting it either, or the diagnosis. No breast cancer in my Mom's family history and not sure of my Dad's. He passed away 41 years ago and we have no contact with his family (they're in another state). Hang in there, you have lots of support here. Let us know how it goes for you.

Yogamom2 so glad everything is good. You give me lots of hope.

new DCIS diagnosis

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