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msarcich
msarcich Member Posts: 33
edited October 2016 in Just Diagnosed

hello,


just within the hour i was diagnosed with breast cancer. can any of you help me understand what i was told? they said dcis intermediate grade. how bad is that?


and now they said i should see a surgeon. i'm in the philadelphia/wilmington area. do any of you have recomendations on a surgeon or hospital/center that i should consider using?

and would that be the best next step? what next step would you take? is this where i get a second opinion? or should i consult with the surgeon first?

information will calm me. right now, i don't even know what i feel.

thank you for any help

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  • Susieq1950
    Susieq1950 Member Posts: 1
    edited August 2016

    I just read your post and have a long family history of cancer. I have family a sister who research and found a new treatment for cancer because she saw the poor results my mother and younger sister had after their diagnosis and treatment which included chemo and radiation and surgery.


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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited August 2016

    Hi msarsich:

    I am sorry about your recent diagnosis. You will find a lot of information and support here, and things will get better the more you learn about your diagnosis and treatment plan.

    As you may have been told, "DCIS" or "ductal carcinoma in situ" is a form of non-invasive cancer and has a favorable prognosis. Pure DCIS is considered Stage 0.

    Current treatment guidelines recommend surgery at a minimum. Thus, DCIS is typically initially treated with lumpectomy alone, lumpectomy plus radiation, or mastectomy alone (without radiation, if confirmed by mastectomy to be pure DCIS).

    If the DCIS is hormone receptor-positive (positive for estrogen receptor and/or progesterone receptor; ER+ and/or PR+), "endocrine therapy" (e.g., tamoxifen or an aromatase inhibitor), which is NOT chemotherapy, may be considered. If surgery confirms pure DCIS, chemotherapy is not ever recommended under treatment guidelines.

    Grade can be low (Grade1), intermediate (Grade 2), or high (Grade 3) and the higher the grade, the more different the cells look from normal cells. On the main site here, I found this page with illustrations to be helpful for understanding DCIS, which is confined to the inside of the ducts and is by definition "non-invasive" (has not broken through the wall of the duct into the surrounding breast tissue). Also, there is an explanation of "Grades" and terms such as "cribiform" and "solid", which describe the degree to which the duct is being filled up by DCIS. Read and scroll all the way to the bottom to find pictures:

    http://www.breastcancer.org/symptoms/types/dcis/diagnosis

    Be sure to obtain a copy of your complete pathology report (and any addenda or supplements). Meanwhile, many new members find this comprehensive post from Beesie to be extremely helpful. You may wish to bookmark it and review it from time to time as you move forward and more information becomes available to you.

    A layperson's guide to DCIS (original post in the thread):

    https://community.breastcancer.org/forum/68/topics/790992?page=8#idx_229

    One may seek a second opinion at various points in time. For example upon receiving a pathology report, one can seek an independent pathology review. Unless there is some reason to think the pathology may not be reliable, I think most patients probably consult with a surgeon at this point. Then, with a treatment recommendation in hand, those interested may seek a second opinion review of their pathology slides, all imaging, and/or initial treatment recommendations at an independent institution. There are several sections with information about the second opinion process on the main site, starting here:

    http://www.breastcancer.org/treatment/second_opinion

    I recommend looking for a "Breast Surgeon" who specializes in the treatment of patients at risk of or with breast cancer as essentially all of their practice. Because surgery involves a team, and because one might need to consult a Radiation Oncologist or other expert at some point, the quality of the facility and depth of its staff is also important. I looked at hospitals with a comprehensive breast cancer center. For example, if you are reasonably near an NCI-designated cancer center, that may be a good option:

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

    Keep in touch.

    BarredOwl

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited August 2016

    Edited my post a few times for clarity.

    BarredOwl

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  • msarcich
    msarcich Member Posts: 33
    edited August 2016

    consider this a virtual hug. i can't thank you enough. this is what i need to calm down and start taking next steps. thank you.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited August 2016

    (((((Hugs)))) to you. So sorry you had to join this club, but so glad that you are here! The ladies here are wonderful and always provide excellent advice, support, and encouragement.

    Right now, you are at the most awful part of this "journey". You don't know much about your cancer, you have a thousand questions swimming in your head and you feel overwhelmed, scared, stressed, numb, shaken to your core, and terribly frightened.
    I remember the day that I was diagnosed and came here, to these boards. Everyone was incredible! The comforted me, encouraged me, gave me some much needed info, and offered me friendship. Honestly? I don't think I could have gotten through those days without this place. It absolutely was my sanity saver!
    I just want you to know that you will be okay. It may not feel like it right now, but you will be. Like I mentioned, the beginning is the hardest. Once you meet with your oncologist, get more info on your cancer, and create some sort of a treatment plan, I promise that you will feel better, more in control.

    Hang in there and remember.....you WILL get through this!!!

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2016

    Welcome to the best place you don’t want to be. DCIS is non-invasive and “Intermediate grade” is Grade 2, pretty common. Many DCIS tumors are Grade 3, multifocal and large--so if you had to get breast cancer, this was a relatively “good" kind to get. Make an appointment with a breast cancer surgeon--not a general or a cosmetic breast surgeon--and at the best breast health center at a major university-affiliated hospital, with its own cancer center, as you can afford and get to. You want a surgeon who does breast cancer surgery and nothing but--and lots of it (at least 100 a year). (S)he will lay out your surgical options and the pros & cons of each. Get your full biopsy path report. It will tell you the estimated size, tumor location and hormone/HER2 receptor status (if they’ve tested for HER2 receptors--they very rarely do for DCIS, which while usually HER2+ never gets chemo). Treatment after surgery will depend on type of surgery and the path results from the actual tumor.

    So first things first: make the surgeon’s appointment, and the surgeon will recommend a medical oncologist (MO) and if necessary, a radiation oncologist (RO).


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  • Ta2d_Cutie_80
    Ta2d_Cutie_80 Member Posts: 5
    edited August 2016

    I don't have a DX yet, but my testing is being done through here. So far my experiences with them have been wonderful. They're very patient, kind, and take the time to explain everything. Good luck in your journey

    image

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    You have the best kind of dx: it wasn't the invasive kind. Most of us would have robbed a bank or worse to have your dx. But you might want to consider, if you haven't already, a few lifestyle changes to protect yourself from getting a future dx like most of us got. Adopt a better eating plan--there are books on the subject and you can find recommendations here on these boards, get 150 min of moderate (walking at a quick pace, etc.) exercise a week, don't smoke/avoid drinking more than 3 drinks a week, check your Vit D levels yearly and make sure they are in the higher range (I'm between 57-67 when my oncologist checks--your GP can order a blood test for you), try to clean up your living environment--pesticides, carcinogens, the like, and consider aspirin therapy--take 1 aspirin a day, which has some protection behind recurrence backed by some hard science.

    It's not a guarantee, but might help to keep you from having to come back here later with an invasive c dx.

    Good luck. You're lucky. Be grateful!

    Hugs

    Claire

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  • tsoebbin
    tsoebbin Member Posts: 474
    edited August 2016

    Hi msarsich. Sorry you're here but you're in the right place for support and information. You've received great advice from those that have posted already. Hugs to you this morning.

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  • msarcich
    msarcich Member Posts: 33
    edited September 2016

    first, thank you all for your instant replies. that day of diagnosis...i was in such a bad state emotionally. in shock. numb, yet feeling almost every feeling, anger, sorrow, if that makes any sense. and your immediate responses were such lifesavers to me. you helped center me, calm me. and you all made me feel not alone.

    so, now, after following your wonderful advice, i not only have a breast surgeon at university of penn hospital, i also have a plastic surgeon and finally, today, just got my surgery date -- september 28. the plan is right now is for a unilateral mastectomy and for plastic surgery i will be getting expanders at the same time ( i am not a candidate for any other PS option). if my genetic tests come back positive, then it will changed to a bilateral.

    emotionally, i'd say i'm not doing that great. i feel next to tears most of the time. fragile all the time. especially at my stronger moments. it feels like a light breeze could blow me apart. not having a date was becoming extremely difficult for me. i'm very very type a and just need to know. so what stresses me now is not being fully diagnosed. i have califications and a lump. only the calificiations were biopsied (complication in sterotactic biopsy), not the lump. i am scared to learn what my true diagnosis is. yet not knowing is tearing me up.

    and i have a fear of surgery in general. my c-section i had an infection in the incision that took 2 very painful months to heal. i'm fearful of this recovery. i'd almost rather be in the hospital for two weeks until the drains come out. almost. and afraid that i'll be afraid to look at myself in the mirror. i don't know if i'll be able to handle what i see.

    the financial strain is another burden i don't know how to handle. we don't have a large budget to work with. i don't know how we will handle the bills. every new appointment i make, inside i cringe at the cost. but i still am making all the appointments. i had no idea it would be this costly.

    i don't know that i have any questions at this moment. i wish someone could walk me through the entire experience in as much detail possible so i could better understand what to expect. from arriving at the hospital to getting the implants put in and finally to recovery. that's huge. i know. any details you are willing to share will help. i'll try to think of very specific questions in the meantime. thank you again



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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    msarcich, I was recently diagnosed with DCIS, grade 3, the highest grade. I opted for bilateral mastectomy. My mother had invasive ducal carcinoma at age 57, I am 49, and I wasn't taking any chances. I had never had any surgeries in my life - NONE. To say I was petrified of the surgery would be an understatement. I worried myself sick almost, which does you no good. Believe me when I say it is not as bad as you are imagining! The scariest part was being wheeled into the surgical suite. But everyone was so nice and the anesthesiologist assistant was talking to me. Last words I remember were, "Here comes some happy juice." They put something in my IV. Instant anxiety relief. They put the oxymask over my face and said take some deep breaths. Next thing I know I am in recovery, and I thought I was texting for some reason lol. I knew where I was and what operation I had had. There was no nausea or vomiting. But I did cry. I guess that is common. The pain was tolerable. I had a pain pump in the hospital and I stayed for 3 days. They put drains in that you go home with. Mine were removed in a week. I am two weeks postop and the pain is really not that bad. It's mostly the expanders that feel weird. It took me almost 10 days to look at myself in the mirror. No, it's not pretty, but the cancer is gone! They will improve with time. Hang in there, you can do this! Lots of people on this website will help you get through it! Good luck to you.

    Bluebirdgirl

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  • msarcich
    msarcich Member Posts: 33
    edited September 2016

    your words really lift my spirits. and give me courage. and calm me. thank you so much. two weeks only from surgery? you are so kind to take the time for me.

    may i ask another question? how did you handle having the drains? i mean mostly from logistics point of view, but please add any other insights you think are helpful. i'm seeing special tops and camisoles with pockets built in for the drains. is that necessary? what did you do? i'm thinking perhaps i can sew something now at home and attach it to a velcro belt of some kind. those post-surgery clothes are very costly to me.

    thanks again. and i hope you continue to do well with your recovery and treatment.


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  • bluepearl
    bluepearl Member Posts: 961
    edited September 2016

    I didn't have anything special to carry drains in. Just tapped. You can also get reasonably cheap mastectomy bras from eBay. You can get FREE (or by donation) knitted knockers (online). I find them WAY more comfortable than anything and I needed TWO. It is VERY normal to feel vulnerable and fragile at this time. I walked 10 miles a day crying and lost 20 pounds from hardly eating. But you find inner strength to keep strong. You will . Try not to think of every thing at once. I live in a country where we have universal, single-payer coverage, so no bills. It makes my heart bleed when I hear of others' financial struggles. But, one step at a time. Right now you are in the process of surgery and healing and dealing with anxiety, perhaps depression and fear. Don't add money issues to it. BTW...I took out my last drain myself. There was confusion at the hospital and I got sick of it, so looked it up online. Found it. Did it and applied antibiotics. SO, do not worry about them! They don't hurt. Wear loose fitting tops for awhile. If you have any pain, get that attended to IMMEDIATELY. Don't suffer. Will you be getting a sentinel node biopsy? Highly recommend it. Take care ((((HUGS)))))

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  • msarcich
    msarcich Member Posts: 33
    edited September 2016

    i feel like i'm in the boxing ring corner and you're behind me coaching me to get ready for the fight. :) thank you again. and o.m.g. you took the last drain out yourself? wow.. i'm too much of a weanie. couldn't do it. but good to know it's not a big deal.

    9/28 is my date. it can't come soon enough, but the closer it gets the more nervous i get. thanks for all the support. so appreciated over here.


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  • msarcich
    msarcich Member Posts: 33
    edited October 2016

    hello my mastectomy was on Monday. Right breast with sentinel biopsy. One drain.

    They got me into surgery a few days early. I was discharged Wed. And until now things have been going very well. But suddenly I am not getting any relief from my pain with my meds. And I am extremely uncomfortable.

    They have me on perceset and valium. And those meds made me very comfortable until last night. Now it feels like they are not working at all. I have a pain coming from my back near my shoulder blade that is shooting down my arm. And when I take a deep breath I feel pain on the outside of where my right breast was

    I'm about to call the doctor but thought I'd ask you for advice on what this could be and what to do.

    Thanks

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited October 2016

    Hi msarcich:

    Contacting the doctor as you planned to do is the best approach. For background information, I posted recently on some possible causes of pain in another thread:

    https://community.breastcancer.org/forum/91/topics/848430?page=1#post_4810192

    Farther up in this thread, you mentioned reconstruction with expanders, which may present additional expander-related pain issues.

    Hope you can work with your doctor to figure out what is going on and get some relief!

    BarredOwl

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  • bluepearl
    bluepearl Member Posts: 961
    edited October 2016

    I had pain too and it IS major surgery so you can't really escape that part for a few weeks as it keeps getting better. Pain should ALWAYS be addressed with more or different meds. I had post mastectomy pain syndrome for 1 and a half years, meaning that for me, I had pain under the top part of my arm like a really bad sunburn. Since you had a sentinel node removed only, you should not experience this. They wouldn't give me stronger pain killers because previously to this, while waiting for diagnosis, my doctor gave me too strong an anti depressant so had a nervous breakdown and was suicidal. So no opioids for me! Sadly. Tylenol just didn't work and I was crying almost all the time from the pain (which if not addressed can become "fixed" in your mind..that's why I stress it). I read on the internet that a man had a lung removed and it took him 3 years for the pain to vanish so I held on to that. So, it did go away. (and remember I had 7 nodes removed and the surgeon got a nerve). So don't be afraid to ask for something a little better....tramadol for example. You won't become addicted. With all the anxiety one doesn't need pain added to it. You should be ok...time heals.....in probably more quickly than me because the other breast I had only the sentinel node and two others removed and all is fine....yes surgical pain for awhile.....but try to be your own advocate and stand firm. Sometimes doctors just don't get it. Oh and yes, expanders can cause a lot of pain.


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