Where do i fit in?

LadyD

Where do i fit in?

LadyD

Hello, ive been diagnosed with DCIS high grade risk jan 15th. I am 29 years old and do not have what they consider a family history of breast cancer. I has some pain and after being ignore three times in the last 1 1/2 i requested a female doctor who then sent me to get a mamogram and ultra sound. My calcifications cover 2/3rds of the front of my breast an the complet backside of it. I read my MRI report which said they suspect invasive carcisoma in the worst curve of it. I just had a lympnode biopsy because some of my nodes had bumps on them. Ive met my surgeon, oncologist, and a few others..so much in so little time.

I exptected them to tell me to back off the caffine or something like that, not tell me i have cancer. I have three small children who are special needs and really no time to be sick lol. What i am noticing is i dont see anyone with this as young as i. I am at this point hoping for both breast to be taken off. I understand that it doesnt mean it wont reoccur but teh chances of that happening drop by 95%.

I find that i am consoling the people around me, I feel lucky but they look so sad. It isnt normal for a 29 year old to get a mamo so i think im lucky. I have lots of questions about surgery and reconstruction so i sought to find other women like me.........so hi everyone!!!!

mom3band1g

I am new here too.  I just found out I had DCIS this past Tuesday.  I will meet with my surgeon on Wed.  I am not as young as you, 39, but I FEEL like I'm too young for this.  I am opting for the lumpectomy and radiation at this point.  I don't know what grade I am yet.  I am so new at this I don't have much info but wanted you to know I feel for you.  I have 4 kids and my youngest has just turned 4.  It is scary.  Finding out it was DCIS did make me feel like I had won the cancer lottery.  So strange how your perspectice can change.  Good luck and keep reading.  Info gives us power. 

kellyrs

Hello ladies. I'm new too and I'm from the UK. I'm 38, have two girls, ages 6 and 3, and was diagnosed with widespread high grade DCIS in the left breast just after Christmas. I had a sentinel lymph node biopsy last week to see if there has been any microinvasion. On 2nd February, I'm having a mastectomy, and if the nodes are positive, an axillary clearance as well. It was such a flukey find - in the UK, we don't do mammograms until age 50, but I went to the docs with an achy boob and she thought she found a lump so referred me to a breast cancer clinic. Turned out there was no lump, but a mammogram showed up the DCIS loud and clear. I've been reading this forum over the last week or two and there are a few people who really seem to know their stuff and care - and that feels like such a relief. It is really good to know you are all there. 

Nipi

Hi Ladies!

I guess we are the under 40 group. I'm 37 and was DX on Dec 22nd. I just had re incision on Wednesday for clean margins. I have a 2 year old, and needless to say, this is all so overwhelming.

My DCIS is grade 2. I should get the call no later than Tuesday, to let me know if a mastectomy is needed. We are all in the right place with this board!!! So many women with so much info. Beesie is a great resource for information on DCIS. I call her the QUEEN B!

kellyrs

Hi Nipi - I noticed Beesie too. What does 're incision for clean margins' mean? Some of the language is going over my head. Don't know if that's because I'm in UK or if it is because my DCIS is widespread - there's no lump to speak of, no margins to deal with that I know of. I'm going to lose my breast and that's that I guess.

MaryDee

Welcome ladies, sorry that you all had to find out about this forum. I hope you find lots of information and support here.

LadyD - I hear you on feeling like there's noone else around the same age...I was 37 when diagnosed but looking around the waiting room at the clinic I was the youngest person there by at least 20 years and then some!  My youngest was 16 months old and yes it can be really tough going through treatment with littlies, so start thinking now about some strategies for getting through this.  Don't be afraid to ask for help when you need it from whoever you can. ((hug))   

Kelly it sounds as if Nipi had a lumpectomy where part of her breast was removed to start with it...if they don't get a margin of cancer-free flesh around the part removed it means that there is still DCIS in there.  Sometimes they will do another surgery to try to get a clear margin, but if not then it means a mastectomy is needed.  Sometimes, depending on the size and location of the DCIS a mastectomy is done first. Feel free to ask lots of questions - both here, and at your breast clinic. Find out if there is a specialised breast care nurse in your area, sometimes the nurse can answer general questions that you have in between your drs appts.

Nipi

Yes Kelly,

Mary is correct. a re incision is when the go back and take more breast tissue, and hope to get over 1mm of clean tissue around it.

I am on my way to see my surgeon because I have some fluid build up around the lumpsectomy site. This fluid sound every time I move is driving me crazy. Also, I should find out if she got clean margins.

LINDAGARSIDE

Hi there Lady D!  So wonderful that you pushed for a mamogram!  Good for you...and welcome to our club.  DCIS...while it is cancer...it certainly is something you can get on top of and treat effectively...at least...this is certainly what I've been reading. 

My tumor was 15% DCIS and 85% IDC....and all together it was 2cm. 

You will find you have support from sisters who are in their 20's, 30's, 40's, 50's, 60's and beyond...we are surviving and doing whatever it takes to get through this.  It seems the enemy is not partial to age...it really doesn't matter. 

Let's fight this thing...and win!  Yahoo....onwards and upwars everyone. 

kellyrs

Nipi, I wish you luck; it is horrible having to go back and forth and not know where you are with things. Hope the fluid gets sorted and fingers crossed for good, clean margins. x

MariannaLaFrance

Hello all,

Another young-ish at heart (just turned 40 this year). I have 3 little ones (ages 7, 4, 2). I just got the news today that I have DCIS, and have no idea what is going on....still in complete state of shock, and dealing with aftermath of my family members falling apart around me.  I had a needle biopsy yesterday and the radiologist called me today with my results. She says it's DCIS, low grade, and that I needed to talk to the breast surgeon to get more information on my treatment, which would most likely include a lumpectomy. I have no idea of what the other options are, but I am reading that radiation is a normal course as well. What a hellish roller coaster day I have had today.  

LINDAGARSIDE

Hi Marianna...when I first joined this club (one that none of us ever thought we'd belong to) about 2 months ago, I was in a state of shock.  I think that is where you are right about now.

Take a deep breath and try to arm yourself with accurate information about YOUR situation.  Not everyone has the same grade/stage/type of cancer.  Information to your situation is KEY...not just for you but to help give peace of mind to your family and friends as well.

Keep copies of absoutely everything...pathology reports, diagnosis, biopsy etc.  You will need these to guide you as you make decision about what is the best treatment plan for you.  Do not be intimidated by any medical person who might try to refuse you copies of anything. (Most will automatically give it to you upon request but you will run into the odd person who thinks YOUR information is private and not for you...LOL!).  Keep all your information together in some sort of binder.  Start to write down your specific questions and then write down the answers when you see the specialist.  It helps to take someone with you to take notes as you discuss things with the Dr.

Above all, do NOT give up hope and get discouraged.  Stay positive and tell any negative thoughts to get away from your brain.  Rely on your inner strength and your love of your family to motivate you to FIGHT.  Now, get busy...get positive and stay strong.  Please know that everyone here at this site is here for you.  You will find lots of understanding and encouragement.  You will be giving this same encouragement to others one day...honest you will!

Please let your family members know that you are all going to be soldiers in this fight and you need them to be strong and to help you win.  Winners pull together...like a rowing team...all pulling at the same time.  if anyone says they don't know if they have the strength to fight, give them permission to leave the team for the duration of the war.  They can stay at base camp and do the cooking and cleaning. 

Raili

Hi LadyD, I'm sorry you had to join this club, but I'm glad you've found us!

I'm 31 and considering getting a double mastectomy.

I had a lumpectomy for 1cm tumor of mucinous cancer plus 3mm of DCIS that was close enough to the tumor that my surgeon could take it all out at once.  Margins weren't clear around the tumor, so I had a re-excision last week.  Just got the pathology from that - it turns out the "3 mm" of DCIS was actually, surprise, almost 3 cm.  So now I have to decide: re-excision followed by radiation (assuming I'd get clean margins this time!!), or a mastectomy.  I see the fear in the eyes of my friends and family when I say the "mastectomy" word, even though they try to hide it and assure me that I'm the only one who can make this decision and they'll support me no matter what.  It seems like everyone is more scared of me losing my breasts than I am.  My surgeon tells me that a re-excision + radiation would be enough, but I'm just not sure.  It worries me that the area of DCIS was much larger than it appeared to be on MRI, ultrasound, and mammo - it makes me wonder what else may be lurking undetected in my breast, or even the other one.  Having a mastectomy might be worth it for my peace of mind.  Everyone keeps saying it's "SO EXTREME" because I'm "ONLY THIRTY," but I know I would still love myself, still love my body, even if I didn't have breasts...

By the way, check out the Young Survival Coalition - a website just for breast cancer survivors under the age of 40.  There are a lot of us.  http://www.youngsurvival.org/young-women-and-bc/bbs/

LINDAGARSIDE

Hi Raili.  As you know...only you can decide what is right for you.  You've not really asked anyone what they would do.  May I take a risk and say what I would do if I was your age and experienced what you've gone through with your surgeries and reports?  I would go with my gut.  If my gut is saying have a masectomy (and I think it would)...I would go for it.  It's easy for others to look horrified at your decision...but if they were in your shoes they might be saying or doing the same thing.  Only you can decide.  Don't let others influence you...please listen to your gut as you know what is important to you...nobody else does.

LadyD

Hello everyone, Since i posted this alot has happened and ive one alot of research. I also found the Young Survival Colation, www.youngsurvival.org Which is for woman under the age of forty who have breast cancer, those ladies are awesome and have been a big help.

I met with my surgeon again, and she supports me with wanting have to both breast removed. Ralli, you have to follow your gut and do whats best for you. I had an aunt that had one breast taken off ten years ago, and i saw how she conintued to live her life as a single woman and be happy. She chose not to have reconstruction, so i know it can be done.  My family thinks its extreme as well but tehy arent the ones who may have to live 30 years or so wondering about a reoccurance.  I know how you feel ralli, everyone seems to care more about my breast that i do, and while ive always loved them very much im not willing to give my life for them.

I am in the mist of worry about the afterwards. So far we have not been able to find idc, which is great but they keep putting it out there that my mass is so big, is should be somewhere, so while we couldnt find it on the MRI, maybe they will find it afterward my surgery, Im having immediate reconstruction and i fear that  surgery alone will not cure me and i will end up having to radiate that side and possiably ruin that implant. They keep saying its greatyor lympnodes were clean, but maybe it will be in others, but for now we think surgery cure you. They slip that in there that surgery might not be enough, so im finding it hard to get my hopes up. 

I meet with my plastic surgeon for the first time Feb 18th and i have ton of questions for him. The one thing my aunt told me was dont talk to anyone about your decisions and expect them to help you if they have not had breast cancer.. In some ways i think she was right.  

LINDAGARSIDE

Hi LadyD.  I certainly agree with your aunt.  I am finding that even my husband...who really cares and is trying to be as supportive as humanly possible, is struggling with a lot of this.  At this point, I've not decided if I am going to have a Mx as the lumpectomy seemed to go well (I have IDC and some DCIS but mostly IDC)...but I'm ready and willing to have them both off if necessary, without hesitation.

You really have to go with your gut, don't you?  That is what I'm finding anyway.  Good luck to you...it sounds like you have a great medical team giving you excellent support/advice.  Take care and God bless.

me2u

hi, i am still finding out where do i fit in. started dcis, lumpectomy, 1/3 nodes with microinvasion. breast surgeon says this is rare however yet to meet up with my ONC, hopefully by this week cos waiting for rest of reports to come in.

and oh, am 38 this year with 2 lovely boys, aged 6 and 8, staying in singapore. hi everyone! really nice to have found this forum

LadyD

I just stopped by to see how everyone has been doing???? I read this post and it seems like such a long time ago but it wasnt, and it was interesting to read where my head was at that time..and thankfully I FOLLOWED my gut.

A month later i chose to get a second opinion and found that my original mamo had been botched a little bit and they had missed some of my cancer. I had a bilateral mastectomy in april. After coming home i had to return to the er for shortness of breath. they found some lung nodles, and rushed my path reports that came back IDC and no clear margins. How about that.. so they planned a reincision....and chemo. I chose chemo, no reincision and i start rads on monday. what a fight!!!! Follow your gut guys, i had a feeling it was lurking in there somewhere, and i followed my gut refusing the re inscion with the feeling that they wouldnt get it all. My surgeon felt really guilty about it and was hoping she would get to make it right, but it was pointless to consider not to do radiation, when my onconotype was high, im very ER, Pr+ , and i didnt have clear margins. So im well on my way..but i must say my plastic surgeon did a great job..that im about to mess up with radiation..lol but there are more important things arnt there?

How is everyone else??? its been a very long road, i dont even think im worried about fitting in anymore.

Kitchenwitch

LadyD, I have a son w/ special needs too, so I just wanted to reach out with a special greeting, because we have a little extra to deal with in our lives. How are you doing? (I just had a uni mastectomy on Nov. 18 and am feeling pretty well though very tired.) I hope you have a wonderful holiday and that your healing continues to go well and that the rad doesn't push things around too badly.

LadyD

Wow it has been that long since i checked out?? I literally shut cancer out of my life and took a niceee long refreshing break. I am slowly starting to return to the world of cancer, but ive gotta say my break was a nice one. Hi everyone hows it going? I finished radiation which took forever to finish since i had a onc that couldn't make his mind up, who also "consulted" with others on my case who felt i didn't need radiation..since it would ruin my recon. When i went in for my consult to finish my recon my surgeon who always seemed to be this kind, quiet considerate man looked at my chest then looked at me and told me i ruined everything. Little ole me could come up with only one response.."well doc I've gotta live" Little did he know that he was dealing with a psycho on tamoxifen. Wow i cant even spell that crap now. lol. I never saw him again. Just that quick ive gotta live, brought on a whole new mindset. What did living mean to me?

 It apparently met that i leave all bc places, stop tomoxcrap, delay surgeries, dr appts and just enjoy my family, travel, and go to school. Did i mention how well rested and happy i am? I do not worry about every little pain or strange feeling in my phantom boobs, IVE GOTTA LIVE! I visited my medical onc and i said how often do i have to get scans? she said well that depends on how much time you want to spend out of treatment verses in treatment....SO i get the bare minimum..yay for me. no more worries. I refuse to let cancer take anything else from me. My time with my family, my peace, my friends. Those are the things that matter most to me. Since ive had time to rest ive really found my voice. Im loud, sometimes vulgar and i laugh everyday all day. Its been really nice being on this break, but i know the fine line between being stuck, and being healthy.

 It is time i revisit the idea of finishing my recon, hell im prob the only person who ever had tissue ex-panders in this long. I have finally gotten my last cat scan, and i am not even worrying about the results. I do not relinquish my power by excepting its randomness. I gained power and a life by acknowledging it. Some days i swear the best thing was experiencing the misery on tomox and then coming off... I will forever deal with the dirty looks from the lady who gave me my cat scan when i told her oh i cant take that, but if she can deal and have peace with it..more power to her. Ive got peace off of it.

I have returned to the boards because i am revisiting my options for surgery along with surgeons. I wont be going to see any of the bozos in my area. I now have the energy and right mind set to deal with it. After radiation apparently wasn't a good time. LOL. So we shall see what my second opinion is and where....

Beesie

Lady D, it sounds like you had a very well needed break from cancer.  Good for you, and good that your mind is clear now and you are ready to wade back in.  

You last PS sounds like an ass.  Or maybe just a kindly man who's so wrapped up in his world that he doesn't see the big picture.  Dealing with unexpected rads that mess up the reconstruction plan is not so unusual and he should have handled it more professionally. He should have remembered that survival - which is what the rads was aiming to help with - is one hell of a lot more important than reconstruction.

Hopefully whoever you go to now has a better perspective on this, and hopefully he or she will be able to do a wonderful job with the reconstruction, despite the rads.  You never know, maybe having the expanders in for all this time will end up being a good thing for the reconstruction! 

HLB

I have a friend who had expanders with rads. They expanded the rad breat bigger than the other so they would have more skin in case they had to discard the rad skin. She also had alloderm. I think the expansion was done before the rads though. There is always a way around things if you think hard enough and get enough opinions. What a stupid thing for the ps to say.