I need some hope....

cailindearg
cailindearg Member Posts: 101

I'm new here and was diagnosed May 21st with dcis in situ grade 3, I had a lumpectomy on May 11th but there were no clear margins. It said no "invasive carcinoma seen"

I have decided to have a double mastectomy but I'm terrified it may be in my lymph nodes, but doc will check them at the mactectomy, she said it was very low chance but reading other pp stories I'm not so sure, I'm 43 have 4 kids ranging in ages from 10 to 3yrs. I have no history in my family, my doc with VERY surprised when the results came back, as nothing showed up in the MRI and the needle biopsy was "borderline dcsi" . Who has had grade 3 and NO node involvement ?? My doc said if there was it wasn't found in the lymph nodes I would be done, of course that's what I'm praying for, I want an end to this nightmare !!

They can't fit me in for the double mactectomy until Jul 12th,Frown which can't come quick enough...my heart goes out to everyone here....

Comments

  • 1openheart
    1openheart Member Posts: 765
    edited May 2012

    So sorry you are going through this, especially at this time in your life.  I had grade 3, multi focal, multi centric DCIS with lots of comedo necrosis and NO node involvement.  I had a UMX last June and am doing well.  I have been taking tamoxifen since July, but am currently on a short sabbatical to see if some of the side effects improve while off the drug or if I am just experiencing some intensification of menopausal symptoms.  

    I was diagnosed on 4/28 and did not have my UMX until 6/15.  

    Best of luck to you as you move through this.  I see you are new.  Let me recommend that you search for a member named Beesie and read some of her posts on DCIS.  She is a wealth of knowledge and has some very helpful posts to aid you in your decision making. She is a voice of reason and calm.  Check her out!  There are also some great list and info to help you prepare yourself, your family and your home for your surgery and recovery. 

    Please keep in touch and let us know how you are doing.  Sending you healing, calming and peaceful energy.  Take care.

  • Dixiemine30
    Dixiemine30 Member Posts: 163
    edited May 2012

    Hi Caliindearg -- I'm so sorry you have a need to join us here, but welcome just the same :-)

    I was diagnoised with DCIS, grade 3.  Had a BMX on Feb 2 with immediate reconstruction (TEs) and just had my exchange to implant surgery on May 21.  I did not have node involvement....no radiation, no chemo.  DCIS means it is contained.  Sometimes the diagnosis can change when the final pathology report comes back after surgery.  It's way to early to fret over that yet.  Beesie is the DCIS expert around here, hopefully she'll chime in with all her expertise.  The women here are GREAT....I would have went out of my mind without them :-)

    I'm happy to answer any questions you have or share my experience with you.  Use your time to prepare mentally, physically and environmentally for your surgery.  ((hugs))

  • LAstar
    LAstar Member Posts: 1,574
    edited May 2012

    Hi, cailindearg -- I'm in the same boat and my BMX is on the 19th.  Because only DCIS has been found, there is no reason to think that the nodes are involved.  If you look through some of the discussions, you will see in people's signatures lots of info on their nodes -- 0/2 nodes, 0/4 nodes, even 0/22 nodes!  The numerator is the number of nodes involved and the denominator is the number of nodes taken.  Unless there has been some undetected invasion, the nodes should be clear.  Best wishes on the 12th!

  • 1openheart
    1openheart Member Posts: 765
    edited May 2012

    Hi callindearg...  after I posted my message to you earlier, I noticed that you titled you topic "I need some hope" and it reminded me that I had posted something that might help you.    I posted the following on the anniversary of my dx. with the intention of giving hope to others who are in the same place I was back then.  Here is the link.  Maybe it will give you some of the hope you are searching for.  Feel free to private message me if I can help.  

    http://community.breastcancer.org/forum/68/topic/786612?page=1#idx_10 

  • Cyn0619
    Cyn0619 Member Posts: 63
    edited May 2012

    Hi callindearg

    I had a lot of comedeo necrosis but had no node involvement. My dr removed 2 of the setinal nodes on the cancer side but none on the other side. I had te's placed during BMX and just had my exchange surgery a month ago. Best of luck for your upcoming surgery. The surgery was not as bad as I anticipated. Feel free to pm me if you have any questions about the surgery. I would be happy to answer them for you. Take care

    Cindy

  • cailindearg
    cailindearg Member Posts: 101
    edited May 2012

    ok, Lastar, thanks for the explaination about the node involvement, I thought that was the number of nodes involved, that makes me feel better...

  • cailindearg
    cailindearg Member Posts: 101
    edited May 2012

    Thanks do much ladies for you're kind words !

     I was also wondering about those who have had  BMX , how did you feel about 5-6 weeks on, I have tickets to a big festival in the desert that I've been looking forward to all yr, do you think I would be in a position to go 5/6 wks after the BMX ??

  • Anne888
    Anne888 Member Posts: 58
    edited May 2012

    My grade 3 DCIS was 11 years ago and at that time it was considered unnecessary to check the nodes, since DCIS is by definition non-invasive.  But my surgeon and onc were both agreeable to the sentinal node biopsy since that was what I wanted for my peace of mind.  The nodes were clear, just as expected, and I felt better knowing that.  Please keep in mind that although your DCIS is grade 3, this is still at a non-invasive stage.  Which means it can't hurt you if you get rid of it now while it's still non-invasive.  The early days of dealing with all of this are the hardest, but you will get lots of information and support from this website.  Take some deep breaths and keep posting.  We're all here for you.

  • koffman51
    koffman51 Member Posts: 5
    edited May 2012

    My Dx was the exact same....however, after my first lumpectomy,my margins were NOT clear.....I opted for a second lumpectomy and 6wks of radiation......I spent my 60th bd,having radiation.....That was exactly one year ago.....and I still wonder if I did the right thing....I have had two check ups and mamms within the year.....both times negative....however, both times, I was sent in for more specific mamm pictures....just when I stopped thinking about the cancer on a daily basis.....its still those little things that have you always asking if the lumpectomies were really the right decision.......That feeling of "doom" only creeps up on you when they ask for more X-rays......I do keep a close eye on it.......but honestly.....I have to believe,a double mastectomy is the way to go......I'm just waiting for the dx of "ALERT,MALIGANCY"....once again...........You are doing the right thing.....my thoughts and prayers of you slowly losing your anxiety are with you......it WILL go away.....slowly.....but everyone of us know exactly how you feel......we have been there....you will be too.

  • LAstar
    LAstar Member Posts: 1,574
    edited May 2012

    Methinks there is a Burner in the house.  )'(

    Recovery times vary a good bit from what I've read.  One woman had no reconstruction and was back on her bike in 6 days.  A lot of people complain about the discomfort of their tissue expanders for months, some are okay.  I will have hip flap reconstruction and expect to still have drains up to 8 weeks later.  

    I had to cancel my annual performance at the Oregon Country Fair, which I look forward to ALL year, because I'll be only 3 weeks out and hip drains + portable toilets = bad idea.  Grrrr.  

  • cailindearg
    cailindearg Member Posts: 101
    edited May 2012

    Yep, LAstar, Burner,  here Smileand you know hard it is to get tickets this yr !! 

    Sorry you had to cancel you're performance..I am planing on reconstruction so I will have the expanders in, so not sure how I'm going to feel at that point, I'm sure everyone is different too.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited May 2012

    hmm, 2 lumpies and they did my titoos for radiation to start only to find more DCIS which meant lumpie #3.

    as rocky a start as I had, it is now 4 years from the bad mamo that started it all and ...knock wood but so far clear.

    will post back after my next mamo which is Monday, it will be the first time I went 1 year between mamos so understandably nervous

  • cailindearg
    cailindearg Member Posts: 101
    edited May 2012

    Thank you Koffman51 for you're support !! I think if I were older I may do another lumpectomy and radiation, but the thought of taking the meds too for 5 yrs really put me off, the double mactectomy does seem very radical, but with 4 small kids, I don't have time ( and who does ) dealing with biopsies, mamograms, waiting for results ect..I want this to be done, as I'm sure everyone else does... wishing you all the best...

  • LAstar
    LAstar Member Posts: 1,574
    edited June 2012

    Your incision should be healed up enough at 5 to 6 weeks to keep out the Playa.  If you are uncomfortable still, you will probably rather be uncomfortable in BRC than at home.  If you have a good crew to help you with lifting, you will probably be just fine.  I've not been, but many dear friends & family make it their #1 priority every year.  It will be a nice treat after a tough spring!

  • cailindearg
    cailindearg Member Posts: 101
    edited June 2012
    Proudtospin, good luck on you're mamo next Mon Smile
  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2012

    cailindearg - have you read this excellent post by Beesie?  It answers many questions for those with newly dx'ed DCIS.  In particular, your question regarding grade 3 and node status.

    http://community.breastcancer.org/forum/68/topic/770422?page=1

  • CandDsMom
    CandDsMom Member Posts: 387
    edited June 2012

    Hello-

    I am not exactly in your shoes, but I was diagnosed with ER/PR negative grade 2-3 DCIS with necrosis in March 2010 a few weeks after I turned 35. I had a BMX, and reconstruction and am 27 months later and feeling good at age 37! I had a 9 month old and a 2 year old at the time of diagnosis. They are now nearly 3 and 5 and doing great, loving having their mama be a big part of their lives. It sucks to deal with any of this, but time keeps chugging along and all seems ok. Once I hit 40 I think I will feel better (?maybe) but it does, at any rate, get better with time. You can do this! Are you registered for the picture forum? V. Helpful for recon issues...

    Best wishes

  • vickilind61
    vickilind61 Member Posts: 338
    edited June 2012

    cailindearg, my MO did say that it is very common for DCIS to be grade 3, I know my was.  Definately check beesies post; full of great info.

  • stephN
    stephN Member Posts: 284
    edited June 2012

    Hi there Cailindearg, I had DCIS, grade 3, at biopsy.  And I also didn't have clear margins the first time around.  That's also really common with DCIS.  What's really UNcommon is having node involvement.  Your diagnosis would have to change dramatically for that to be the case, and since they already did one lumpectomy, it's a good possibility that you're in the clear.  

    I'm the same age as you are...I was 42 at diagnosis.  It's going to be okay.  I'm almost to my "cancerversary" and I'm feeling really good, mentally and physically.

    Steph

  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2012

    Calli, thanks for the good wishes, with the approval of my docs, I do have spa day the day before so I have my massage and facial booked for Sun!  The docs and nurses thought I was nuts the first time I told them but I highly recommend it!

  • midnight1327
    midnight1327 Member Posts: 1,475
    edited June 2012

    Calli, the waiting gets to you, i was grade three, ductal carcinmoma, had a lumpectomy and rads, they did not  offer me a masctomy and they offered me chemo, but with a slim chance it would do me any good, like 7% chance out of a 100 that i would get any benefit, so opted out of it and had rads and tamoxifen.  just had follow up mamo and they have found significant changes in the other breast and i have to have a repeat mamo on the 12th of this month,  just had  one on 18th of may which alerted them to the changes. another waiting game. i am praying you have  a positive outcome and i will keep you in my prayers. it is very nerve wracking all this stuff. Take care. , thinking of you.  hugs xxxx  p/s, i had no lymph involvement.

  • akinto
    akinto Member Posts: 97
    edited June 2012

    I was diagnosed in early April and am waiting for rads after two excisions.

     There's a ton of hope. With good treatment, lots of support, some lifestyle improvements you've probably always intended to make anyway, and great screening, your chances of recurrence are quite low, really, even with grade 3. If you have access to an academic library, read this article: Rudloff U, Jacks LM, Goldberg JI, et al. Nomogram for Predicting the Risk of Local Recurrence After Breast-Conserving Surgery for Ductal Carcinoma In Situ. JCO. 2010;28(23):3762-3769.

     
    I am doing everything I can to reduce my likelihood of recurrence. Low fat diet? Check. Increased aerobic exercise? Check. Weight loss? Check. (16 pounds since my bad mammogram results in February). I am inhaling salmon and antiangiogenic foods. Trying to relax more? Hope to check it off soon.

    And I am taking every treatment that will help. Tamoxifen? Check. Radiation and a boost? Check. I am trying to talk my GP into prescribing metformin off label.

     It's what we all do. We find our own ways in which we can increase our odds of non-recurrence. And in that we find hope.

     Find some folks that can help you identify ways to get stronger, to contribute to your own health. It feels so good to be near them and to take on the challenge.

  • midnight1327
    midnight1327 Member Posts: 1,475
    edited June 2012

     I eat heaps of salmon, my mom suggested that almonds are an excellent source of food, and a drink she has, i have not done it yet is honey and cinaman,   ( excuse the spelling) in hot water at night. supposed to be good for your imune system. i have not tried it as yet, i keep forgetting to get the cinaman.  i have the honey. so that may be a help. i cant say how good it is as i have not tried it, but according to mum, its supposed to beexcellent. she said, they got it off the web.  i do eat almonds though and also brazilian nuts are a good food too. just some hints. take care.

  • cailindearg
    cailindearg Member Posts: 101
    edited June 2012

    Thanks girls for all the stories of hope and kind words !

    I just found out that I'm ER-/PR-, my surgeon is telling me now, she's glad I have opted to have the BMX...

    This is a bit scary but I don't know enough about it, except that Tamoxofin wouldn't work... all I can hope now, they don't find anything else and I will be done after surgery

    CandsMom glad, everything worked out for you Smile

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