Large area of microcalcifications

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  • Emaline
    Emaline Member Posts: 492
    edited July 2011

    Hi Scilla,

     Sorry I missed your post. I have been off the board for a bit.  I am pretty ample as well and yes, right now I am lopsided.  I have learned to pad my bra very well.  I am gettign to the point in reconstruction that I am padding less, so that is good!   I always ask my husband before we leave the house if the girls are looking good and even. He lets me know if I need to make some adjustments.

     I have opted to have my non-cancer boob, reduced and lifted during the exchange surgery.  Gravity and pregnancy have not been kind to my breast.  So I am excited to have this part done. I think it will hopefully make it easier for him to match my breast up. It will not be perfect. I know that...but it will be better then what I have now!

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  • Scilla
    Scilla Member Posts: 29
    edited July 2011

    Hi Emaline,

    Thank you for your post. Although not the preferred route to get a boob job, there is no doubt that in my case it would be a bonus - maybe there is a silver lining to this rather large cloud!

    I will post again after my appointment to get my test results tomorrow.

    Best wishes

    Scilla

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  • summer10
    summer10 Member Posts: 9
    edited July 2011

    Scilla

    You asked what questions you should ask your MD. Takes notes, Ask for a copy of the biopsy report. Find out what the doctor feels are your best treatment options, then research what the doctor says and see what your best options are.

    You don't need a background in medcine to navigate breast cancer, just the internet. Do your own reseach on line. Google your biopsy report. Many people say don"t research breast cancer on the net....I sat in a medical library and the answers there were the same as the net.

    i know a cleaner who found she had a tumor in her liver, when her MD said everything was OK, a machanic who came to the table with his surgeon and oncologist to discuss his treatment, and he had researched everything, and he was an equal partner in the decision making for his care.

    All I wanted to do was reduce my risk for further cancer to lowest possible number. I did not want to deal with a reoccurance, or radiation and my research told me different things than the doctor told me.

    Decide what you want to get out of your treatment plan, what you feel comfortable with and then let the doctor know what you want.

    Good Luck Tomorrow

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  • Scilla
    Scilla Member Posts: 29
    edited July 2011

    Hi everyone,

    Well, today I had my appointment to discuss my biopsy results and diagnosis, but I am still no further on.

    My BS told me that although abnormal ductal cells had been identified there was insufficient evidence in the sample to be certain of DCIS or to tell if there was any invasive component. I have a second stereo-tactic biopsy arranged for later this week- groan!

    What he was clear about is that I will need a mastectomy due to the large area of microcalcifications, even though he has yet to confirm the presence of any cancer - apparently this is standard procedure?!? He seemed to be convinced that DCIS is present, but the biopsy failed to sample it. I asked him if the abnormal cells had migrated through the ducts to create such a large affected area, but he is of the opinion that there are many separate abnormal areas that arose independently. Surely, this would mean many separate mutations. (He can't be right can he?- I thought mutations were a rare occurrence?)

    Since the consultant did not have a definitive diagnosis, he was not prepared to discuss many of my questions or concerns this week and my husband and I quickly found ourselves back in the waiting room. I now have new follow-up appointment for next week and so the story goes on.

    It has been a real roller-coaster of a day and I've got it all to do again next week!

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  • Emaline
    Emaline Member Posts: 492
    edited July 2011

    I'm so sorry scilla.  I guess I am confused...he says you will have to have a MX even if there is no cancer present?  Or only if DCIS is present?  I do know if there is DCIS present over 5cm it is standard to have a MX. I do know some women who have had lumpectomies and they had larger the 7cm but I don't think it is standard. 

    Waiting is the hardest part and not having answers, sorry :(  

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  • flannelette
    flannelette Member Posts: 984
    edited July 2011

    I'm sorry too, Scilla, that you have to keep riding the rollercoaster. But to my way of thinking, I'm reminded of my own results at surgery - IDC with a lot of DCIS mixed in. Maybe your DCIS cells are just beginning to be hooligans - that is, a very early stage - so, in fact, you've caught things, though over a large area, very early. and to my way of thinking, less opportunities to have gone elsewhere.

    Perhaps if I had had my biopsy 6 months earlier, it would have turned out much like yours. and I had no nodes, no vascular invasion - (and no metastases that we know of - knock on wood) - all pretty darned nice after the scare of a big tumour. 

    So I'm tending to feel good about your results so far - I mean they're having to hunt for the bad guys, who aren't yet out there in droves. Great!

    There's another thread here called dcis and mastectomy - interesting to read wht they have to say.

    Again, sorry you have to wait, .....but honestly, i think if i were you I'd be feeling - well, sad about possibility of MX - who wants that? but encouraged about the apparent very early state of cells deciding to kick authority and become delinquents.

    Arlene 

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited July 2011

    I would NOT agree to a mast without evidence of cancer.  How about a 2nd opinion.  A mast is no small thing and you can't go back.  I'd avoid it like the plague if at all possible.

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  • bruthd52
    bruthd52 Member Posts: 17
    edited July 2011

    Hi,  I just undewent my 3rd lumpectomy two days ago.  I've had 5 cm, 6.5 cm, and I don't know what was removed this time, but I'm doing it all to avoid mastectomy.   I'm lopsided but will undergo reconstruction.   I was also told I need mx after the second lumpectomy but found another surgeon through researching credentials and she felt another lumpectomy was a better choice.  I was only diagnosed 3 months ago and being told you need a mx for DCIS is awful.  It's stage 0 cancer.   I have a lot of it but am glad I've opted to avoid the mx so far.  You can never go back from that.  I have found too many MD's are all too willing to do a mx way too quickly when there are other options.   The surgeon I just went to is compassionate, understanding of the emotional part of having a breast partially or fully removed and has been wonderful.  I'm so glad I went to several surgeons for opinions.   I travel 130 miles to go to her but it's worth the drive.   Now I'm waiting for the next path. report and am praying my margins are clear.   Then it will be researching rads and how much to have of them.   Because I am thru menopause the likelihood of the DCIS recurring are lower than women who are premenopausal  (I'm told 6 to 8%).  This has been a traumatic journey and I completely understand your fear.   The internet has been great for  me, however, it gives you many options to deal.   The choice has to be YOURS not your MD's.

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  • Emaline
    Emaline Member Posts: 492
    edited July 2011

    Scilla, any updates yet?

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  • Scilla
    Scilla Member Posts: 29
    edited July 2011

    Hi Emaline and other friends following this thread,

    After 2 stereotactic biopsies involving over 15 core samples (not for the fainthearted), pathology did manage to find the DCIS in 2 distinct areas. I have been told that there are some grade II and grade III areas. The DCIS is in patches, but over a large area so the surgeon wants to schedule a mastectomy.

    Currently, all options for reconstruction are open, but I am confused by the choices. They are happy to organise a mastectomy for 2 weeks time if I do not want immediate reconstruction.

    I can have a skin sparing mastectomy followed by an implant, but they will not do this without a sentinel node biopsy and won't be specific about how many nodes would be taken. Being left handed and with the DCIS in the left breast, I am clearly worried about lymphodaema. I have a friend who had a lumpectomy who has such bad lymphodaema that she wears a cuff for most of the time. I asked if they would biopsy the breast first and only do a node biopsy if invasive cells were found, but they were not keen on this idea. Is a sentinel node biopsy needed if DCIS is the diagnosis? They also tell me that they may not be able to create a very large breast and so may need a flap as well. I have also been informed that implant will need to be replaced about every 10 years because of the formation of scar tissue.

    Unfortunately, I cannot have immediate reconstruction as I am a bit too heavy and will need to lose about 40 pounds. The PS thinks the surgical risks too great and wants to wait. That means 3 visits to surgery - mastectomy, reconstruction and, finally, reduction of the other breast. If I am prepared to wait until I have lost weight before surgery, I could be given an oestrogen inhibitor, although because it's DCIS they haven't tested the cells for receptors yet, so how do they know it's oestrogen sensitive?. I freely admit to being freaked out by this. If some of the DCIS is grade 3 how do I know how long it will take to become IDC - I've read some pretty scary stories, so I'm tempted by the 'lets get it out of here' voices in my head.

    The surgeon then told me there is a choice of reconstruction using a back flap or diep flap - quoting a probable 3 months off work and 5% failure rate.

    You know, all I want them to do is to remove the DCIS and leave my breast intact, but it's not going to happen and I feel overwhelmed by the choices. I also have no idea what the final result would look or feel like. I am worried that I will no longer be me. Any views or advice welcome.

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  • Emaline
    Emaline Member Posts: 492
    edited July 2011

    SNB is pretty much standard with a MX.  They can't tell you how many nodes they are going to take because it is a random thing. You are given either a nuclear injection prior to surgery and they wait and see which nodes light up. I had 5 nodes light up, so they took all 5 nodes. Sometimes you will see girls here with one or two. It is completely random.  Sometimes the nuclear injection does not work and they use a blue dye instead, then the doctors just pull the nodes that are blue, again, random.  Oh and I hear you pee blue for a  couple of days.

    The doctors will have a quick pathology done on the nodes right then. If they come back clean, then they move on with the surgery.  If cancer does show up...and this is something you need to discuss with your doctor right now, do you want more nodes taken right then?  There are new study that show that taking more nodes does not offer any benefit..but it depends on size of tumor and other factors.  LE is a  problem, I've read some posts by ladies who say it was worth it to get the cancer out, and others who feel they were given the raw end of the deal.  It is something you really need to talk with your doctor about and find out more on.  For me, I would get the SNB, because it is good indicator that there may be more cancer present.  Oh and a final, more thorough biopsy of the nodes is done after the surgery, so you can get a call back that perhaps cancer was found in the final pathology.

     Your PS won't do the reconstruction and reduction at the same time?  

    Your BS should know your ER/PR status right now and what grade your cancer is.  If it is a grade one, then probably waiting might not be bad...if it was a grade 3, I wouldn't wait but that is me.

    Have you had a breast MRI?  I'm sorry, can't remember.  If not, I would ask for one.  How big is the area that they are looking at?  Mine was over 7cm and my BS said they recommend a MX but if I insist, they would try and do a lumpectomy, but if they did not get clean margins...I would have to have a MX.  Have you had a 2nd opinion?  I most definitely would talk to another doctor prior to doing anything.

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  • summer10
    summer10 Member Posts: 9
    edited July 2011

    Scilla

    There is a life after a mastectomy. I have had one, no reconstruction. I am 58, no need for another. I have thought about it. Just not interested in going through the additional surgery. Only off work 4 weeks- no radiation needed.

    My life is wonderful, at least as wonderful as it can be wondering about what could happen with the other breast. Lymph nodes have to be checked to ensure that the DCIS or whatever you may have hasn't moved outside the breast. This also helps with knowing what your future treatment plan will be.

    i sat at a party with a girl, about 30 on Saturday. she has is BRAC positive, had both breasts, uteris and ovaries removed- has tumours on her lungs and spot on her spine- she has outlived all expectations, but on high levels of pain killers right now. Once she knew I wasn't adverse to discussing mastectomy, she started on about how important it is to get the cancer before it gets you..she even advised me to just go in and take my other breast off- something I have thought about.

    It is so hard to talk about MX verses lumpectomy. Some people just don't want to loose that breast and will do whatever it takes to keep it. The girls I see in palliative care tell me that they wish someone had not pussyfooted around the subject when they were making their decisions, because some of them would be out living their life now.

    What is life after a mastectomy? Going to parties, family functions, vacations...enjoying my grandson. I have several prosthesis, I can wear a bathing suit and a strapless gown. When I have the prosthsis on I feel no different than when I had the breast, only when I take the bra off at night do I realize I no longer have a breast. I have what I call a stub on the side of the mastectomy. It is a bit of fat. If I wear the right bra, I even look like I have cleavage.( I was rather large breasted)

    They took a few lymph nodes out for me, no lymphedema. i know someone who did have it, and told me exercise and massage helped.

    Loose the weight, your fat contains extra estrogen. I don't take the estrogen inhibitor, the oncologist advsied me that since I took the breast off probably not necessary- risks outweigh the benefits- do your own research- remember estrogen positive receptor tumours less aggressive.The inhibitors only good for up to 5 years and then all bets are off, in the mean time they have their own risks.

    Didn"t need radiation- the radiation oncoloist said the risks would outweigh any benfits Left side have to be careful of damage to the heart, lungs, and radiation can cause future cancer.

    they will upsel or down sell you on the treatment as they feel you need it

    I know you are scared, we all are, cancer isn't fun. Try to think long term. For most of us it is wake up call, try to make the best decision for you. Think about what you want out of life and go for it.....

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  • Scilla
    Scilla Member Posts: 29
    edited July 2011

    Hi Emaline,

    In response to your comments:

    Firstly, why do they take all the nodes that light up? Surely the radioactivity is just showing up the natural drainage route out of the breast, not the location of cancer cells? Secondly, if they do discover cancerous cells in the sentinel nodes then chemotherapy should kill any remaining cancer cells in the rest of the body - so why take out the rest of the nodes? You can probably tell from this that I am freaking out about the sentinel node biopsy. I am desperately trying to avoid lymphodaema in my writing hand, but am worried that I may be at greater risk because I get oedema in my ankles in hot weather. Clearly, the less of my drainage system they take the better off I am.

    On the surgery front, my BS does the reduction after the reconstruction has settled down. He says he gets a better match this way. I have to admit that I am looking forward to getting smaller perhaps more youthful breasts, but am dreading the prospect of several visits to surgery. I also have the problem of deciding on the type of reconstruction. I am due to see the breast nurse assigned to me to look at some photos and to discuss my options, but like the BS she is not offering any suggestions - she claims the final decision must be mine (good or bad?). On the other hand, I want to know which procedure gives the best result/least complications. How is your reconstruction going - smoothly I hope?

    I haven't been offered an MRI - what does it show that is not on the mammogram? Should I be asking for one? They don't do as much testing here in the UK as in the US - probably because of the cost.

    I have been told that the area of microcalcifications is 13cm (this must be my whole breast). I managed to get a look at my mammogram and there were at least 2/3 clumps where the dot- dot calcium deposits followed the route of several ducts. There were also isolated pockets - so I guess this must mean it is multifocal. Sadly one area is close to the nipple, so I can kiss goodbye to that!

    Like you, with patches being grade 3, I leaning towards getting the mastectomy done sooner rather than later to reduce the risk of the DCIS becoming invasive, but I am trying to weigh this against having a short time to say goodbye to my breast - after all it has been with me my whole life and I am sure that I am going to miss it!

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  • Emaline
    Emaline Member Posts: 492
    edited July 2011

    Summer10 good post!!  There is life after MX.  I have opted not to get a prosthesis (can't spell sorry!) because of my weekly fills, I felt it would be more of a bother.  I have gone swimming, completely lopsided and all.  People can deal with it. I'm not going deny myself the life I want to lead because it may make others uncomfortable.  You get really good at the art of staring others down :)

     I wish I knew more about the nodes, you may want to go to the LE board and see if they have any wisdom for you. Unfortunately, I really can't answer you questions.

     I am very much looking forward to getting smaller breasts!  Pregnancy and gravity have not been kind, and I have only been realizing this recently...so am very much looking forward to having smaller breast.  Your doctors can't tell you what you should do, they can make recommendations based on body type and that type of thing...but it is such a personal decision.  I would go to the reconstruction board and read all the good, the bad and the ugly posts.  No matter what you opt for, there will be good, bad and ugly posts about it.  You need to do the research and make the decision that is best for you.

    I have opted for TEs with a silicone implant.  I just had my last fill on Tuesday, so I am now in the minimum 5 week wait, and then they will take out the TE and put in the implant.  I opted for this for a number of reasons. One was recovery.  I love the DIEP reconstruction and my doctor is very good at it...but it is a longer recovery period and I didn't want that. It is a longer surgery...this scared me, right or wrong...I have a fear of being put under and facing a 10 hour surgery, scared the bejesus out of me.  Longer hospital stay. I have two small kids, I didn't want to be in the hospital any longer then need be.  And here is the beautiful thing....you can always change your mind.  If you get an implant and are unhappy, you can have them removed.  I read a wonderful post recently about a girl who had implants and was not happy and went with fat grafting, and was so much happier.  There are doctors who recommend waiting a year (hard when you are going unilateral MX, but with a prosthetis you can do it) before making a decision.  

    I didn't realize you were in the UK.  My father was born in Kettering :)

     As for MRI's, I think we have to be our best advocates and yes MRIs are really good, especially if you have dense breast.  I would ask and ask and ask and ask and ask, and ask again for one again until you got your way.  MRIs will show things that do not show up on mammograms, which is why so many people are pushing them. I had one since I have dense breast and my doctor wanted a clearer view of what was going on in both breast. Luckily in my case, it should nothing further, but as he warned me, it could show further cancer in the same breast or could show something not seen on the mammogram in my other breast (not likely but could happen).

     I lost my nipple as well.  And since my last fill have been having wonderful phantom nipple itching. Driving me mad.  You will adjust. I have found the skin (TMI here, sorry) in my clevage, near my underside of the breast is very sensitive, wonderfully so. I have no idea why. It seems like a bizarre place to me...but I will take it :)

     You should miss your breast.  A MX should never been an easy thing.  Too many times we all joke going "Well they can rebuild it! I will get perky boobs out of it!" but they will never, ever be the same.  It is a loss, and it is not a decision that should be made lightly.

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  • Scilla
    Scilla Member Posts: 29
    edited August 2011

    Hi everyone,

    I've finally come to terms with the fact that the MX is going to happen . The surgery is scheduled for Wed 10th August - UMX with no immediate reconstruction. I can't say that I'm not worried about it because I am, but having read so many posts detailing the good and the bad I can at least go forward with my eyes open. I just hope that my BS knows his trade well and he was taught how to cut straight and embroider neatly. I 've seen plenty of photos of botched jobs, but my breast nurse told me that my BS was very neat - so I guess I will have to trust him. He is also going to do a SNB due to the large size of my DCIS (I'm praying for negative results).

    I do wish that there was more help from my hospital with the post mastectomy side of things. There has been no advice concerning suitable clothing (do they really expect you to wear a bra afterwards?), how to sleep comfortably (on your back?) and what to expect following discharge (nurse visits and follow ups?). I've read posts about ladies that have slept in a recliner for weeks and who are still having problems with drains, seroma build up, pain and healing problems months after their operation. Perhaps there are some positive experiences that others can share to give a more balanced view.

    Good luck to all the other ladies having operations this week - there are alot of us and I hope to be back posting by the weekend.

    Scilla

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  • summer10
    summer10 Member Posts: 9
    edited August 2011

    Scilla

    Hope all is well. There is a vest you can wear that has areas for a foam prosthesis. ( and one is provided, it also has a place for the drain) You should be able to get it at a store that specializes in prosthesis and bras for MX.

    I also found a light sports bra-top was easier to wear than a bra. You can also look for a silky bra/type top used for those with radiation- very nice material, gentle to the skin, and easy to wear.

    If you are just having one side done, you can sleep on the other side. If only a SNB, your sleeping should be OK soon. The only issues I had, long term, were becauase they took the lymph nodes out.

    In Canada the nurse came daily till she took the drain and sutures out. She shows you how to empy it yourself.

    BTW- No matter how well he embroiders, it looks horrible the first time you see it. But it heals well.

    I went out shopping , driving etc within a few days. No lifting for a few weeks. The most important thing is to find somehting comfortable to wear, and to get a foam prosthesis so you can get on with your life. i actually found a store before my surgery and went to see them. i picked up some great ideas...and the bras are much nicer than some of my old ones, much more expensive too.

    You should wait a month or so before you look for a prosthesis, as it takes a few weeks for the swelling to go down. You can decide at any time regarding reconstruction...you get to go shopping again for these if you want them.

    Here is a web page that shows the vest.

    http://www.roches.ie/product/anita-lingerie-mastectomy-vest-top-alicia/

    Good luck

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