Another Mamo and Ultra Sound

krevel

Another Mamo and Ultra Sound

krevel

I was diagnosed with LCIS 2 years ago after I had my 3rd cyst removed. I now see a surgeon and oncologist at a renown hospital.

I am seen every six months with a mamo once per year. I have had 1 mri which was normal. yesterday my onco felt a change in an area of tissue I have had checked regularly. I am not on tamox, couldn't tolerate it . So here I go again.... she wants me to have a mamo and ultrasound. its like I am not even worried, I have been

through this before. is anyone out there like me? someone who has this condition and is virtually playing the waiting game and crossing my fingers, just keeping up with regular check ups.

Anonymous

Oh how I wish!!!!

Im a little over a year out and I STILL get the cold sweats, nervous, upset stomach...you name it, I get it!!!! about a week b-4 the appt...

Im hoping to get to the point you are and praying the fear goes away or at least dies down some as time goes by, but I too know its just a waiting game until the other shoes drops....and continue to keep fingers crossed that my next appt wont land me in surgery again....my second 3 month followup mammo found microcalcs in my other breast so had them removed to be sure of what they were....I just feels that each time I go for any testing it lands me in surgery....4 surgeries in 6 months is more than enough for me!!!!!

I really look forward to the day I can non-challantly walk in and out of that place.....

Jule

krevel

Did you ever consider a  mastectomy? Since my path report showed 9 out of 16 slides with LCIS, so I am like right in the middle. at first the option of a mastectomy was out of the question.

I wish I knew what other women would do. Wait and cross my fingers and everytime I feel something get checked or have the surgery. What would you Do??

Anonymous

No, I never considered a mastectomy....I looked at all my options and just couldnt face that one....Ive been thinking since answering your message here and NO I still cant face that option....so for now I will continue to be monitoring closely and hope for the best.....

This is a very personal decision. I choose my treatment plan custom to fit me and what I could accept and not accept....I made two lists...one for lumpectomy and one for mastectomy....I listed all the pros and cons on each list...that is kind of how I made my decision...

Hope this helps..

Jule

Anonymous

I forgot to tell you that I had IDC, but I dont see where the difference in the emotions or thought process would be this is the beast and we all have to be concerned about and even more so once you've been dx'd with in situ to try and keep it from turning invasive...

femme

I have gone from "do nothing but watch" to considering Evista to a double mastectomy, in the space of 5 weeks. Today I feel more certain than ever, that a double mastectomy will be the direction I will go in . When I read the first 2 comments on this thread, I knew that for me, the worry was not something I could handle.



I was put in touch with a woman who just had a double mastectomy because she needed peace of mind. Oh yes, my mother had breast cancer and when I just filled out the form for my genetic testing tomorrow, I realized that there is a fair amount of cancer in my family. I also need peace of mind. I need to get my life back again so that my biggest worry is twisting my ankle or losing my cell phone...not cancer.



As for the question "What would you do,?" the woman I just spoke to was finally able to get a doctor to tell he that "if it were my wife, I'd tell her to go for the double mastectomy." But I know that we are all different in our capacity to deal with uncertainty. Some of us stink at it. These up and down 5 weeks have shown me that I can't wait for the other shoe to drop, even if it might never drop.



Good luck to all of us in making good individual decisions that we each can live with.

mamaotis

I have only known for about five weeks also, that I have LCIS and ALH.  In the last four months I have had two biopsies/a duct excision/an MRI/ultrasounds....and definitely understand where everyone is coming from.  I have read alot ) and I really think I'll probably go the double mastectomy route also~  I just don't want to have to relive the last four months...................every six months.  My breast oncologist/surgeon is having me do an MRI or mammogram every six months; CBE every six months.  I also started tamoxifen--so far so good with that. 

I think it is a very personal decision for each of us; but I am so glad to have found this forum....at least everyone here knows the fear/uncertainty/the stress, etc. that each one of is facing.  I know it really helps me to see other folks wrestling with these same decisions!  

A question I have........does anyone have any good estimate/on how long someone generally needs to be off work following bilateral mastectomy?

Good thoughts to all of us~

Nancy

Anonymous

Hi Nancy,

Sorry to have to welcome you to this site like this but wanted to reassure you that YES all of us here know the emotions of going through a dx like this.....we've all been there...

I dont have the answer to your question about the time off work but I think it will vary from person to person as each situation is different and each body heals at a different rate...it will also will depend of if you are having immedate reconstruction as well...

Best wishes

Jule

femme

I have heard that a double mastectomy and reconstruction with something called spacers, I think, is not so bad. The woman I spoke to said the pain is definitely manageable. She said that there was a difference between recovery with saline reconstruction or using muscle from one's body. I think she said that saline was a shorter recovery. She also said nipples could be tattooed on or there could be a more extensive skin graft. Does anyone have more details? I am sure that when I see my surgeon, good as he is, he will not have time to fully answer my questions. That seems to be the way surgeons are.



The time frame this woman who had the double mastectomy gave me was 1 to 2 months till you feel close to yourself. Can anyone give me more solid info? My head is no longer in the sand and I am ready for graphic details.



Thanks to all for all the generous sharing of info on this site.

Anonymous

Nancy,

You might think of starting a post on the reconstruction site on these boards...I think you will get better response and answers to your questions from others who have already been down this path....

Best wishes

Jule

ophelia

Hi all,

I will be having a PBM with immediate I-Gap reconstruction on January 14th.  I've been tossing this decision around since July of this year. I've tried the watchful waiting for 21/2yrs and I can't do it anymore.  I have mamos every 6mts and they are always followed by ultrasounds, and then biopsies, and now MRI's.  I have very dense breasts, which make it difficult to detect abnormalities.  In 05 I was dx w/ ADH borderline DCIS.  I was placed on tamoxifen and watched every 6 mts. This spring I was dx w/ LCIS and ALH.  Drs. don't know if tamoxifen is helping me.  For me it's not a question of IF but WHEN will I get bc.  I can't trust that it will  be found early and I don't want to have to go through all those treatments. Hopefully, I'm still in time and  won't get any unwanted surprises on the 14th.  

I did not make this decision lightly.  I struggled with it for 6 months. When I told my bs that I was considering this, she agreed that it was probably my best option and she said that if she were facing the same dx, she would make the same decision.  This is a very personal decision and not  right  for everyone as we are all individuals with different dxs and levels of tolerance. 

Femme, I have been told that I'll need 6 weeks off work.  Most women I've spoken to say that at 6wks they felt pretty much back to normal.  If you are trying to decide on a type of reconstruction, there is alot of useful information on the surgery and reconstruction threads.  

Good luck to everyone in there decision making. 

LCISgirl

Maria,

You'll be in my prayers for your surgery on the 14th.  I opted for bilateral mastectomy for my extensive LCIS in only the right breast.  The pathology results gave me peace of mind because it showed that there was a small invasive portion.  I had previous stereotactic biopsy, 4cm excisional biopsy and core needle biopsies that only showed LCIS prior to mastectomy.  I had that "gut" feeling of "What if they just didn't biopsy in the right place?"  ahhhh, it's tough to make these decisions.  I feel so, so thankful that I went ahead with mastectomy.  I know that with careful monitoring the invasive portion might have been caught early enough (before moving to nodes etc.), but I'm just glad that I didn't give it the chance to move faster than my next check up!  My prayers go out for all who are making these decisions and I trust that you will each know what is best for you!!

Keep us posted on how things go!!

Take Care~

femme

It has taken me exactly 5 weeks to deal with my LCIS diagnosis. I am going for a prophylactic double mastectomy. I am' too good' a worrier to be able to live with the constant testing and waiting for something bad to happen. I respect the difficulties all of us have in coming to our own decisions. i send everyone my best and love.

Anonymous

krevel---I was diagnosed with LCIS 4 years ago.  I see my oncologist every 6 months (have an appt tomorrow) and my gyn once a year for clinical breast exams; I alternate digital mammos with MRI every 6 months, I do frequent SBEs and I take tamoxifen to try and prevent an invasive bc. I am also high risk due to family history--my mom had ILC ( but is a 21 year survivor and doing very well). I do OK for the most part living with the high risk, except when awaiting test results. Right now , they are "watching" 3 spots they saw on my last MRI (one in particular) even though they feel they are most likely benign--false findings.  So while being watched very closely is comforting, it is also very stressful at the same time. Someone told me recently that instead of "waiting for the other shoe to drop" I should put on that shoe and dance! So I'm trying very hard to remember that and live my life without constantly worrying about something that may never happen.
  It's not easy, but I'm trying.

Anne 

liveit56

Anne, I sure wish I had your confidence...I guess I have to remember the part where you said " So I'm trying very hard to remember that and live my life without constantly worrying about something that may never happen."...thanks for that...needed some good thoughts.

 I wish you all the best.

liveit

leaf

Ophelia - the person who is the most important in this decision making process is You. It sounds like you have thoroughly examined the options, and know in your heart what is best for you. That is all that anyone could ask for.



It sounds like you have a supportive physician. That is so important too.



Please let us know how it goes for you. I wish you a very speedy recovery, so you can get back to living your life!

ophelia

Thank you ladies for your kind words and well wishes.  I especially appreciate the prayers on the 14th.   I will keep everyone posted.

Best wishes to everyone.

Peaches70

krevel, I guess I fall somewhere between where you are where femme is. I am not terrified by my high risk status, but definitely dread each mammo. I find myself dwelling on it in the weeks leading up to the appointment. It's been nearly 2 years since I was found to have ALH, nearly a year since LCIS. I have a hard time seeing myself going through the rest of my life with this hanging over my head, and I'm not dealing well with the procedures themselves. So...I am taking steps toward bilateral mastectomies. My breast surgeon said that it was probably the best route for me, and that if she were in my place, she would make the same decision. Since she earlier had said that I wasn't ready for that "yet," I have to think that something about my situation made her change her mind.

ophelia/maria, I will be seeing the same surgeon(s) you are for a consultation in January, a week before your surgery. I will be thinking about you at that time.

Anne

Kitwe

Wow You guys are amazing. 

 I have considered doing nothing and just forgetting about the whole thing (I could probably do it too). I've also considered bilateral mastectomies.

I had my first two biopsies over 30 years ago...no mammograms back then.  They were benign. (Right breast) My third biopsy, last spring was also benign but they found the LCIS then in my left boob.  Last Friday after a routine checkup my onc. felt something in my right boob-> ultrasound ->I need to have it biopsied.

I do get nervous but I am OK with surgery.  I have confidence in my onc but something is missing...

By any chance , Peaches, Ophelia & Maria is the surgeon that you see in Florida? 

Peaches70

Drs. Levine and Allen have three offices, NY, South Carolina and New Orleans.

Mellow, you have lived 30 years since your first biopsy with none in between? That's great. I understand why you are nervous now. Remember that LCIS is a marker, an indicator of risk. Depending on your age and comfort level, you may not need to do anything but monitor the situation. Are you seeing a breast specialist? If not, I would definitely find one.

Anne

ophelia

Mellow, I'm from Mass. but I'll be traveling to NY for procedures. Dr. Allen will be doing my reconstr.  Dr. Kemper will be doing the mastec.  They are both in NY.

Good luck in your decision making. 

judi

One thing to ponder is that you can still develop breat cancer when both breast have been removed.  Why have such a drastic thing done when you just have LCIS?  I can understand if one develops invasive cancer. 

judi

I have LCIS and I am going to just do the wait and see game.  Life is to short to sit around and worry yourself sick over the fact that you *may* develop invasive BC.  I look at life as a day to day thing and so should everyone one else.  I hate being cut on again and again ,but that is part of the wait and see game.  I just finished up a second surgery last wednesday and feel good that I woke up today.  I have a family history of BC and %-wise, and probally will reach invasive one day, but I feel like I have hit the lottery finding LCIS early on.  This is my way of looking at this whole situation.  I plan to find ways to reach out and help local women that are dying from breast cancer and help with their needs instead of focusing so much on my worries.     

mrave0

Hi,

I had a mastectomy April 2007 on my right side, thirteeen limp nodes removed, one limp node was positive. I had six months of Chemo, last one October 15, 2007 and I'm currently on tamoxifen. I started having a pain in my left breast around two weeks ago, doctor found a small lump in same area as the pain... so she scheduled me for a mammo and ultra sound coming up this Wednesday. I know it could be nothing, but to tell you the truth I'm scared to death and the waiting is so stressful. Just when I thought I had this thing beat, I find myself having all the same fears I had the first time around. I think if I knew then, what I know now I would of opt for the double mastectomy. I feel now I'll always be living in fear that it will be back.

Peaches70

Thank you, Gwen. I've heard the same sentiment many times from other women.

Anne