microcalcification questions

GreenMonkey

try to get a copy of your pathology report.  What grade is it? etc, etc.  

I'm NOT an expert but for me, recently diagnosed with DCIS, grade 3, I was told:

1.  lumpectomy + radiation for 6 weeks + tamoxiphen

or

2.  mastectomy

because I have DCIS in one breast and ADH in the other, I'm having a bilateral (double) mastectomy.  But that is my choice.  I do not want to do the radiation and tamoxiphen.

most important, is that you get a second opinion and then some if you feel you need it.  and in the end you do what YOU feel is best.

My first doctor only picked up the DCIS.  I then went to sloan kettering in NYC and they found the ADH in the other breast.  I then went for a third opinion and then a forth.  In the end, its up to you to make the decision.  It's a personal one.  

Good for you for staying positive!  it helps, truly it does!  Let me know if there is anything I can do to help.  

xoMOnkeyME 

GreenMonkey

(p.s. I thought I sent you an earlier reply but I don't see it here.  where in PA are you?  I was raised in Dallas, PA)

Worriedsickinpa

Hi Green Monkey,

 
Thanks for the reply. After having a digital mammogram which showed microcalc., I had a mammotome breast biopsy and report states DCIS in right breast  grade 3 of 3, no evidence of invasive carcinoma found, tumor is positive for estrogen and progesterone receptors. Nothing was found on digital mammogram in left breast. The radiologist didn't even think the surgeon would recommend the radiation and tamoxiphen, but I guess I will find out more when I see the chemo dr, radiation dr, and surgeon.  I am from the pittsburgh area When are you having your surgery? I hope everything goes well. Are you planning on reconstuction?  

GreenMonkey

I don't have an exact date for my surgery yet but I'm hoping for the end of February or the beginning of March.  I'm having reconstruction at the same time.  

Worriedsickinpa

GreenMonkey,

 Hope everything goes well for you! I'm going to try to hold off on the lumpectomy until the second week of March when I come back from visiting my daughter in TX. First time I have ever flown so should be interesting. lol  

GreenMonkey

I LOVE how we challenge ourselves!  Good for YOU worriedsickinpa! maybe (or not) consider taking a valium.  I'm not a big drug person, but I took one for my stereotactic biopsy and it made a HUGE difference! regardless... good for you for doing the visit first and for taking it all in stride! 

Worriedsickinpa

O.K so I have been doing some reading on the subject of DCIS.  It seems there are as many opinions on how to handle it as "carter has pills"!  It's really starting to frustrate and make me mad!  Some sites say it is not breast cancer and some are treating it as though it is. I understand that there are different criteria that seperate the opinions, but even there I have found differing opnions. And I am not talking about lay peoples opinions, I'm talking about reputable medical websites. Also, I have noticed that people who write in to give their opinions and stories with various differences can be really RUDE (not on this site but others),about how they treat the other person with a different view! I want to say, ladies let's just remember that everyone has a right to their opinion and I realize that stage IV breast cancer is not like DCIS but the problem is that the medical professionals that are treating DCIS don't really know, in my opinion, anything for sure and give varying accounts of how to treat it!If DCIS is just a precancer then why are women getting mastectomies for a diagnosis of DCIS???? NO WONDER we are so scared!   

goldlining

I agree, Worriedsickinpa. Beesie posted a great explanation top of page 5 in this thread. My reaction at the bottom of page 4 was similar to yours: my own surgeon had dismissed DCIS as "not cancer". Thought my request for mx was way overreacting. (But I got it anyway.) So glad to move on to other surgeons for my other mx and I feel much better now, especially from the neck up.

Worriedsickinpa

Thanks for the response goldlining,

I went back and read the explanation on pg5 from Bessie.  I guess I will just have to see what my doctors say when I meet with them.  My concern is that my DCIS is grade 3 of 3 and the comedo. type which from what I can understand is a more agressive type of DCIS and can change to invasive cancer? Again it depends which dr you talk to. I don't want to have a mastectomy unnecessarily, but also don't want to do too little and end up with a worse problem.  Oh yeah, and then there was the article I read where they claimed that there are mistakes being made in the labs where the DCIS is being diagnosed! SERIOUSLY!   How are you doing since your MX?

lisamarie68

I know that LCIS is not like DCIS but they keep saying it is not cancer. I just had a wire and excisional biopsy Feb 7th my BS didnt tell me a flippin thing after surgery . I have LCIS and was told it needed to be removed.the day after i had to go to ER for post op infection .. had another IV and antibiotic and pain meds .. then home with oral antibiotic for 10 days . I feel little pin prick sensations now. I am trying to be calm about pathology results .. waiting is bad ...makes me nuts my daughter  and I found a new BS to see as this one has bad communication skills and no compassion.my post op appt is feb 15th . then i can be rid of her... feeling anxious and sad 

goldlining

Worriedsickinpa, I had grade 3 also. When I had the biopsy, they were even on the fence about whether it was DCIS, and the lab actually sent the sample to another lab where there are research pathologists studying DCIS diagnosis. Through that, they determined that it had most of the characteristics of what would likely become DCIS even though it did not at the time have all of them. Because they completely downplayed it, I had the lumpectomy 6 mo later and, at that time, it was extensive grade 3, negligible margins. I completely understand that everyone is not where I was in relation to wanting to walk away from their breasts, but I was unhappy with the clinic dismissing my values in preference for their breast conservation agenda that perpetrates this hair-splitting word-mincing "it isn't cancer, it's PRE cancer". For me, it was cancer with training wheels. Cancer starting in the mailroom. Cancer with ambition. When I insisted on the mastectomy, the pathology report said additional DCIS was found in the remainder of the breast. Fortunately it was well away from the margins and I was not required to have rads. The surgeon did admit I made a good call, because if I had left it, I would have been back for another surgery in a year. 

After that mx, I had an uncomfortable year with a prosthetic trying to match a DD, with a heavy schedule of physio and massage for the asymmetrical weight bearing, a mx scar that was pulled too tight and numbness from node removal, had to have three crowns for the teeth I crushed under the stress, anger, and rumination, and was on valium daily. But I've been feeling fantastic since my prophylactic 2nd mx with immediate bilateral DIEP (with different doctors!) I look great and am getting around well and what is more, my head is 100 pounds lighter. Haven't had a valium since. But that's me. Everyone has to get in touch with what's important to them. You can't always have what you want (no BC!), but you want to tap into your personal values of the remaining options, what's most important to you. For me, it was peace of mind.

[Edited because correct spelling and punctuation is good.]

Worriedsickinpa

Hi goldlining,

Met with the oncology radiologist today.  His opinion was that RIGHT NOW with the information we have, I should have a lumpectomy with radiation and tomoxifen. But he did say it also DEPENDS what they find when the DCIS is excised. So that said, I have a meeting with the surgeon tomorrow and oncology Dr. the following week.  I guess in the end it will have to be my decision.  I just wish everyone agreed on what the best option is! One day at a time, one moment at a time or I will lose my mind! lol 

I'm glad you are doing well and comfortable with your decision. And thank you for your thoughts and story of your experience. I do have to say that so far the medical professionals I have dealt with  have been very sympathetic and have gone out of their way to answer my questiions and guide me through this process so far!

kennelmom

I had my biopsy today..I could see the lymph nodes in one of my films does that always happen??  It went well took 2 hours..The ladies were very nice.  no results till the 24th of Feb..  she says it is because they want to make very sure and that if it is malignant they will have a plan of action when I come for my results...I told her I have been having pain in my armpit for over 9 mo and the first thing she said was malignancies dont hurt....I have read different on this sight..  so I did not agree with her...haha..

Worriedsickinpa I am so sorry about your results...You are in my prayers stay positive  The women here are just amazing!!! 

Laura

mkmware

To all you here I wish you the best. I am a nurse and do monthly exams in the shower and have yearly mammograms. I have had mammograms since the age  40 and I am  soon to be 57 in May. Last year I had my annual mammogram which was fairly normal but received a letter to have have repeat films. I have had 1 other mamopgram which was normal several years back with repeat films that were just a shadow. I did everything I was suppose to do .I thank god this radiaologist was so atuned and caring and urgent.I had a serotactic biopsy and was diagnosed DICS in September last year, underwent Lumpectomy with radiation therapy wthout difficulty and now on oral therapy. Hopefully your results will be nothing.This is a great site to come to and I still do as you can see from this post. No cancer is good, If it makes you feel better I know this sounds strange but having  DCIS is the best cancer you can get. I beat myself up emotionaly for no reason with worry and fear and finaly go my big girl pantys on and go my act together. This site is wonderful, my advce read for knowledge and  don't read into your results with the worst fears,Do  find a cancer navigator through your local hospital to guide you and listen to you and help you with your selections of physicians. Good nutrition is important.  Easier said than done but being strong, keeping faith and having a good support system  is important to healthy recovery. So far mine has not returned. Surrounded here by family and friends. One journey has ended, another begins. I ring this bell for wounds now mended. ,For those who listen, my story I tell, I celebrate life by ringing this victory bell!

.

GreenMonkey

geez... I don't know where to start.  Kennelmom, I don't know anything about being able to see lymph nodes.  two hours is a long time for a biopsy! was it a stereotactical biopsy? I also don't understand why you have to wait so long.  the waiting SUCKS!!! its the worst part. Please know, that I am commenting on things as a woman recently diagnosed with DCIS stage 3 in right breast and ADH in left breast. I am not a health professional.  I'm reacting and responding emotionally.

I saw a doctor at Sloan Kettering in NYC that completely down played the DCIS but then I realized why.  She is the top DCIS doctor at Sloan.  She was quoted in NYTimes recently regarding breast cancer treatment

http://www.nytimes.com/2012/02/01/health/repeat-breast-cancer-surgery-guidelines-found-unclear.html?pagewanted=all

(if that link doesn't work, google 'NY TIMES, BREAST CANCER MORROW)

anyway, to me, and 2 other opinions agreed with me, Dr. Morrow is interested in research and numbers.  Currently 85% of her patients diagnosed with DCIS undergo lumpectomy, radiation, tamoxiphen. If I have a mastectomy, I mess with her numbers.  Also, if I have a mastectomy, her job is done - she can't "study" me.  She can't see where my cancer takes me, 5, 10, 15 years down the road.  

I am having a double mastectomy but this is MY decision.  I don't give a rats ass what the doctor says.  I know this is right for me. Both breasts have proven to me that they can make cancer. For me its that simple but at the same time I totally understand why women wouldn't go for the mastectomy. 

After 4 doctors, I picked one that was compassionate and supportive of my decision. He was also very thorough. My first doctor missed the ADH in my left breast.

I feel very emotional today knowing this is my last valentines day with my breasts.  Knowing I'll no longer be aroused by my nipples. But I will not be defined by my breast.  I'll suck it up and charge forward. One day at a time...

kennelmom

GreenMonkey I am so glad you found a great Dr.  It is very frustrating to hear that there are medical prof out there that don't have compassion!  I heare about it so often lately.  I would miss my nipples too if I had to go thru what you are going thru.  I hope you have the very best Valentines day!!:)) 

So 2 hours is a long time??  I am having no pain unles I touch it.. I am more sore on my ribs where the were on the table..   On my paperwork it said sterotactic core needle vacume assisted biopsy.... I was refered for sterotactic..so I was a little surprised to see all of those listed.. I was so relieved when it was done.  I think I will be fine till the 24th I know the odds are in my favor..

Thank you all for letting me share, I brag about all of you to my family I think are amazing women..Always in my thoughts and prayers..Thank you for the info GreenMonkey I will read it

Laura

kennelmom

I just read the article GreenMonkey.  She sounds like a piece of work!  I would do exactly what you are doing.  I dont think I could just wait and see.  My sister in law had breast cancer at 19.  she had both breasts removed even tho it was not in the other breast.  She is 23 now and cancer free.  I will never forget what she went thru....  I wish you the very very best!!  

1openheart

Green Monkey,

I have been following your posts as you have wrestled with your decision.  For me, once I had made up my mind on how I was going to treat this, I was finally able to breathe alittle.  Having confidence and trust in your medical team is so important.  We are truly putting our well being in their hands.

I so understand you thinking about this being your last VD with your nipples.  I still have one, since I had a UMX.  But, I really miss my other breast.  Cancer sucks. 

I  hope you have a good Valentine's Day.  Enjoy. 

Worriedsickinpa

Hi everyone,

Here is an update. Met with my surgeon today.  He kind of threw me a curve. He said since my DCIS is behind my nipple my nipple will have to be removed. And my scar will be bigger than I thought. He will start on one side of my breast and cut horizontally to the other side right at the nipple line. When he told me that I thought i was going to throw up! I pictured the incision above the nipple and smaller. And just for "funzies" he said I need a sentinel node biopsy so I will also have a incision under my armpit! Oh joy!  i have to have a dye injected into my nipple and breast the day before my surgery.  Anyone know if that hurts?  And of course they won't know until a week after my surgery whether I will need more surgery or if I will need addtion treatment ie. chemo. if it has spread to the lymph nodes.  So next week I meet with my oncologist. Can't wait to see what he has to tell me.  Surgery is scheduled for March 16th. Hope everyone had a nice Valentines Day!

Worriedsickinpa

12:30 am and still up!

 Hope someone can help me with the question I had about the dye for sentinel node biopsy.  I'm allergic to sulfas also so I don't know how they can use the blue dye?  I'm about ready to just forget the whole thing and take my chances with the DCIS.  I'm still 7 days later after the breast biopsy black and blue and swollen. Now they want to do this procedure with no pain meds? Really, really scared and anticipating the worst!!!

Linda1966

I dont think the dye hurts, but mine was done during the masectomy and I was well out of it. Certainly had no ill effects from the dye though, except it did find microinvasion in the node so I had to have a second op to remove more lymphs.

Please dont not treat your DCIS. My initial diagnosis was DCIS stage 3, but the biopsy of the breast tissue following the masectomy found a IDC hiding in amongst it all, plus a small amount in the node as well. Thats the problem with BC, until its completely removed and biopsied in full they cant definately know for sure exactly what stage and level you have. With luck its just DCIS and the op removes it and all is well. But Im living proof that core biopsies and an initial diagnosis dont necessarily give the full story.

I also have faith in the professionals, if they intend to do a procedure and believe you dont need pain meds, you probably dont. But Im sure they will have local anaesthetic on hand in case its needed. Ive had many small procedures (like Zoladex injections) where the local would have hurt worse than the Zoladex so I didnt bother lol. Same with the fine needle biopsy.

Good Luck Worriedsickinpa. Im hoping for the best of results for you and all the others going through this worrying stage. Most likely you will be fine, the DCIS removed and your life will continue as normal. In the event like me, things dont go according to plan, its still doable. I dont regret the masectomy, the chemo or the Arimedix and would do it all again in a heartbeat should I need to. Peace of mind in knowing that blasted BC is out of you goes a long way to helping recovery

GreenMonkey

Hi Worried Sick, 

I'm also alergic to sulfas too! They said they are going to use the blue dye and the red dye during my surgery (double mastectomy). I was told that they inject the dye before the surgery, then I wait for a few hours (?).  Someone who had the surgery told me (not the dr) that they inject it into the nipple and that it hurts. I'll try and ask the dr. the next time I see him.

i had two stereotactic biopsy's - each on different breasts and both at different hospitals with different doctors. Two completely different experiences.  The second one was much more painful and I'm still bruised 3 weeks later.  The first one was not painful, little bruising but I had bleeding.

I am still waiting for a surgery date and I'm starting to lose patience.

If you ever need to talk to me let me know!  I'm scared too.  Sometimes I'm mad.  Today, I'm numb.  

big ((HUG))) MonkeyME  

lisamarie68

I still know that I am not diagnosed with DCIS but today is my post op appt and guessing my pathology report ... I am terrified ... I found a lump under my arm now and i think im just really freaking out as maybe its a node that reacted to my surgery .. who knows just sick about it all ...

1openheart

Worriedsick,

In my experience, the dye injection was done about 45 mins to an hour before they took me into surgery.  It was explained to me that this is necessary to give the dye time to navigate the ducts and get to the nodes.  I'm sorry to tell you that yes, it hurt.  The lady who did the injections was wonderful. She explained everything she was doing and gave me time to breathe between shots.  I was listening to my ipod and started talking about the music I was listening to.  Turns out, she practices a lot of yoga and I was listening to some "yoga" music to help me relax.  She was familiar with this artist so we talked about that.  The pain only lasted for a few moments after each injection...I could feel the dye going in and by the time they were wheeling me back to the pre op area I was fine.  Compared to the stereotactic bxs I have had, this was not too bad.  

Hope this helps.  Take care. 

francksgirl

Hi ladies that are about to have a double mastectomy. I had mine done on February 3rd. Some of you seem to be panicking for the lymph nodes test with the blue dye. Yes they shoot the dye through your nipple for about 10 seconds. Yes, it burns, it's uncomfortable...but it's only for 10 seconds! One of my lymph nodes, the dye found its way there in 5 min, the other one prolonged my surgery and took an hour. Honestly, if u r getting a double mastectomy, this little tiny test is nothing. It's been a rough 12 days...for me. Prepare tons of dinners now, so you can freeze them! If you know someone in the medical field, ask them for a few ice packs that are re-usable for putting crushed ice in. Lastly, (nobody warned me if this) the ride home after my surgery was the worst!! I had 2 pillows...to kinda help. My husband was pulled over for going to slow. I was bawling my eyes out when the cop came by us. My darling husband just said, "my wife just wants to get home, she just had a double mastectomy done and the car ride has been painful" he let us go right away! Oh, correction, I wanted to bawl my eyes out, I could only get teary eyed!! After you have this procedure, you can't cry, you can't cough and I'm married to an awesome guy that loves to make you laugh...laughing hurts to...if you go the expander route like me...not sure if you get an immediate implant if that is better or not. That's just the route I had to go. Oh, lastly...I thought I had just a 1% chance of re-occurance. After my pathology report came back, my BC surgeon told me that I have a 16% chance of re-occurance WTF!! Might have to take that damn pill afterall and possibly do chemo.i just want the nightmare over!! I only had this DCIS in my right breast...they didn't think it was invasive but it was. I do not have anything in my lymph nodes, it's alllll gone. So, I don't understand the 16% crap. Good luck to all of the ladies that r about to go through this journey!!! Yes it's a long journey to get feeling better. I take baby steps every day! No, you can't do ANYTHING, but go to the bathroom and put a fork, straw or spoon to your mouth!! Lol no, u won't be able to wash your hair by yourself in the sink...oh one more tip!!! TRAIN YOUR HUSBAND BEFOREHAND HOW TO WASH YOUR HAIR, and wrap with a towel before your surgery...sounds lame I know, but just do it!! Lol good luck girls that have to go through this and to all of the girls that are B9....CONGRATULATIONS!! ((((((hugs))))) to all!

jocoma3

I am thankful beyond words that I happened upon this feed.  I am 42 and had a call from my doctor's office (and a certified letter from the imaging center) about my mammogram on January 26.  A 6mm mass and two microcal clusters were noted, so I am going to have a repeat mammogram and sonogram on Feb. 20.  The waiting is definitely the hardest part. I was not familiar with these terms and the research I've done is scaring me.  T'hank you for sharing your stories, I feel like I know y'all!

Worriedsickinpa

GreenMonkey,

 I have been doing some research. On the breastcancer.org website there is an article on the sentinel node biopsy procedure. They talk about a study that was done where lidocaine was used. It was added to the tracer liquid or dye or both that are given with this procedure. Of course the women who had the added lidocaine experienced LESS pain than those who didn't!  It also said that the topical numbing cream helped a little but not as much as the lidocaine mixed with the injections.  And it says that the lidocaine DOES NOT INTERFERE with the procedures success, which seems to be the reason some technicians are giving for NOT using it.

Why are you still waiting for a surgery date?  I know what you mean, yesterday I was mad and then depressed and crying.  I feel like for something that they keep telling me isn't cancer, I sure am having a lot of "cancer" treatments, ie radiation, tomoxifen and now sentinel node biopsy.  Also, with all the drugs and pain treatments available in this day and age they SHOULD be able to make a procedure atleast bearable!  

Thank you for the offer to talk, cause my well meaning family, some of who never had any really painfull procedures done, basically are just telling me to "grin and bear it"! 

Let me know when you have a surgery date!

To Francksgirl,

  You are soooo lucky to have a awesome guy to lean on!  I have been divorced for 16 years and have not been able to find someone like that. I hope you do well with your recovery, and maybe someday you can tell me how to train a husband! LOL

kennelmom

I was in the same position you are...I have microcalcification clusters.  I had my biopsy Mon.  I don't get results till the 24..The waiting is very hard to say the least.  I know how you are feeling..  The women are truly amazing here!!  I was reading everything I could as well and did not like what I read either I am still worried.  But the odds are in our favor:)  

Laure

kennelmom

Hi Francksgirl,  I'm glad you are back you have been on my mind.  My sister in law went thru this at 19..she had the expanders, radiation and reconstruction.  We were with her after the surgery.....It was tough to see her in so much pain.  I hope you are feeling better every day and I will continue to pray for your quick recovery:))

Laura

GreenMonkey

I got the results of my MRI back and it turns out I have 5cm "highly suspicious mass" directly behind my DCIS.