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DCIS - need words of encouragement

becmag69
Posts: 7
Joined: May 2011

Hello,

I'm 42 yrs. old and a few weeks ago I was diagnosed with DCIS. It's at stage 0, grade 2. It's been somewhat a surreal experience. In mid April of this year, I had my first mammogram and since then my life seems to now revolve around this. I am grateful to have found this early and for the doctors and surgeon that are working with me. They have all been proactive and very supportive. I am scheduled this week for an ultrasound for my axillary glands, the following week I will meet with the surgeon, and on June 10th I am scheduled for a lumpectomy. I may have some lymph nodes removed but I wont know for sure till I meet with surgeon. I will probably have radiation and hormonal therapy after.

I know my cancer doesn't compare to some that are at Stage 4 but I can't help feeling afraid. I know the statistics are in my favor. My fear isn't about not surviving but about the journey I will have to go through.

I've done my research yet I'm confused about DCIS. Sometimes DCIS changes character and it may become invasive. Someone may live with DCIS and never know it. Some may have DCIS and after treatment they live long lives. Everyone is different. It's the not knowing that is making me crazy.

I was told I'm at stage 0, grade 2, pattern: solid, gribiform, papillary and focal comedo. So, is my DCIS more aggressive than other forms of DCIS? Will I get invasive cancer in a few years?

A few days ago, we were out with family and I fell apart in front of them. I didn't want to but it just happened. My niece was trying to comfort me and I know her intentions were coming from a loving place but her comments hurt and minimized the challenges I'm facing. She said, "This is nothing. You'll be fine. You may get a boob job out of it. When you start hormone therapy you won't have your period anymore. You need to be strong."
I am strong and I want to educate myself and know what I am facing. Some don't understand my fears: my fear of surgery, my fear that I may have a mastectomy, my fear that they may find some cancer cells in my lymph nodes, my fear of recurring invasive cancer, my fear of going on hormonal therapy (weight gain, hot flashes, etc.).

Because of what some may tell me I really don't like to talk about my DCIS. I do have a supportive husband who listens, comforts, and is by my side. I have one friend who has been the best and doesn't minimize my feelings. I have a sister who is being supportive and wants to be involved in my life (she hasn't been part of my life in years). Yet, when I hear some of the comments that others may say it makes me feel like I'm a big baby and I'm making a big deal about it.

When I first learned about my diagnosis I was numb...I didn't know what to feel. Now I have days when I'm not myself. I have good days and some are not that good.

I do hope to have some feedback and read some of the experiences others have had to go through. I don't want to feel alone.

Becca

BioAdoptMom
Posts: 358
Joined: Mar 2011

I just wanted to welcome you to our little pink family, one no one wants to join, but still, a great, loving and supportive place to be when you are going through BC! I cannot answer your questions (stage I, grade 3, chemo, etc. for me) but I have a very good friend who had DCIS. She had a lumpectomy, no node removal and 33 rads. Four years later she is doing great! Whatever you need, we are here for you!

Nancy

butterflylvr's picture
butterflylvr
Posts: 944
Joined: Apr 2011

Stay strong my sister, I was IDC stage 3 no lymph nodes. My cancer was invasive and grew to a very large tumor in my left breast. I've gone through chemo, bi-lateral mastectomy and now currently in radiation. My final journey will be hormone therapy for the next five years. My prognosis from everything I've read or have been told is very good. You my dear have caught yours early. DCIS means it didn't spread beyond the milk ducts and that in itself makes it encouraging. My tumor was almost 7 cm's long and didn't spread beyond that one tumor. I tell you this, just to reassure you that even if a tumor is aggressive, it doesn't necessarily mean it will start ravaging your entire body. Mine was there for months undetected and all it did was grow in size...

It sounds like you have a good team of doctors and a wonderful support staff. Please don't be shy around here, let us travel this journey with you. Please take our hand...

Hugs,
Lorrie

ilferro1's picture
ilferro1
Posts: 20
Joined: Jan 2010

In 2006 my mom was diagnosed with DCIS. She had a baloon procedure and radiation and has not had any reoccurence.

As for being scared, you are perfectly normal. We all fear the unknown. Everyone here is rooting for you and praying for you. Sometimes family say things that don't sit right with you, but, for sure, they mean well.

Anytime you need a shoulder, I'm here, we're all here for you.

MarleneElla
Posts: 22
Joined: May 2011

Hi Becca
Welcome! I wish I knew about this site when I was first diagnosed. I'm so happy you wrote. It's been an incredible resource of real stories. While we are all different we are united by this thing.

I found Breastcancer.org, National Cancer Institute and Komen.org to be great resources for clinical information. Since we are different, the best thing is to read up and ask questions. Don't assume since it happened to one person it will happen to you. Your doctors are only going to know what their patients went through! All of us have a few more stories. Yours may be unique too.

I would HIGHLY recommend taking someone with you to all your appointments with the same notebook to take detailed notes. If they can't go in with you (ultrasound) as soon as you come out, sit in the waiting area and write things down! My girlfriend offered and it was a huge blessing. The docs would tease me and ask if they she would read things back to them. She ended up asking great questions as well. I think since she wasn't a family member she was able to be a bit more objective. I literally just went through the notes since I always have to think, do I have DCIS? I actually have Infiltrating Ductal Carcinoma.

I was found freaky early. They were doing 8 biopsies of calcifications that were all negative. On the way to one of the sites, they happened to go through 2mm of cancer cells. Mind you, a tumor needs to be about 1 cm or 100 mm to really even be felt!
I had an MRI after and they couldn't find anything and guessed it was hiding in the bruised area from the biopsy. When they did my lumpectomy they were worried they didn't get the right site since they couldn't find any cancer cells at all! All they can figure is they happened to get it all on the biopsy. I opted for a sentinel node biopsy and they took three since they were equal distance away. All of them were negative. I'm doing radiation and plan to go on Tamoxifen.

When at your stage I was thinking, just cut the thing off, I don't want it any more, I'm newly divorced and was thinking men's issues with boobs are stupid anyway. Then I learned, the recurrence rate of a lumpectomy with radiation is the same as a mastectomy (for my type). The surgery is a lot easier too. So decided to go that route. Ironically, I've recently met someone and now am REALLY glad I opted to not have the mastectomy (and I will apologize now for those who didn't have a choice - I was lucky I did)

So at first, I was thinking, no big deal, I'm not a "real" cancer patient, I'm not like everyone else. I felt more like a surgical patient. Ha! Going through radiation has made me feel real and reaching out to this group, sharing experiences and reading other stories has been incredibly uplifting and at times heart wrenching. When I think I have something unique to add, I will post.

I also did a lot of journaling. Every night before bed, write about what went on, how I felt. I think that helped.

So I guess I want to tell you, there is no wrong way to feel, little cancer, big cancer, it's all cancer. It can be scary. You'll hear horror stories and then you'll hear some like mine. It's all okay.

People will say goofy stuff, expect it! I try to realize that they are now going through it too and they are dealing with their own issues! They may be saying what they wish someone would tell them if they were in the same situation.

Best of luck and stay in touch with us.
Marlene

jendrey's picture
jendrey
Posts: 377
Joined: Sep 2009

Hi Becca - sorry you have cause to be here, but glad you found us!

You are not alone any longer. We are here for you; we will listen and care.
What you're experiencing is par for the course but that doesn't make it any easier knowing that. If you weren't falling apart there might be more diverse issues going on.. =)

Your niece's outlook is just about what I told myself!!! Everybody has their own level of what is considered hurtful. I can see where being newly diagnosed you may not have as yet quite decided on how to come to terms with this life-absorbing diagnosis. This is so not the life that you ordered!

Be prepared: People will say the most obnoxious things and in such a nice way too..sometimes leaving you to wonder just what they meant by whatever. For the most part they will give you unsolicited advice on your diet and/or your activities or lack thereof.

Pick and choose a few select people that you're comfortable with to share things with..and just smile and say fine to everyone else that asks how you're doing. Otherwise you may be wasting your precious energy better spent doing things you want to do! I'd use caution with your sister interjecting herself after years of being distant.

Sounds like you have a good, caring medical team. You are very fortunate to have a supportive husband. I'm not one to usually accept help for anythig as I'm a DIY type. But, I've learned that if a friend wants to come over and do the dishes so I can find the sink again well,..I was surprised to learn that I really could live with this after all! lol ;)

And guess what? There probably are both worse and better diagnosis that you'll read/hear about..but right now, right here, this is happening to you and that is all that is important.

One foot in front of another, you'll get there, look around on your journey and don't be surprised to find that you're not alone anymore we'll be right there beside you!

Talk about unsolicited advice!!! lol =)

GrowingSoul's picture
GrowingSoul
Posts: 18
Joined: May 2011

It upsets me that your niece trivialized it so (as you say it surely was all coming from good intentions, but it sure was not helpful at all, and probably made you feel more alone).

You're absolutely normal in feeling the way you do. Think about it this way:
-You have still heard the words: you have cancer (and I don't think it doesn't matter whether it is DCIS or ILC, or IDC - it's the same initial shock, the same fear for the unknown of what treatments you need, the same fear for recurrence we all have)
-You still have all the decisions to make (and sometimes having more choices in decision making can be harder as you start doubting yourself, while for a fellow pink sisiter who has no choice and mastectomy is the only option--that is hard too---just in a different way, but still both are hard things to come to grips with)
- And whether you go through lumpectomy for DCIS, a 2 cm, or a 5 cm tumor...it is still a surgery you need to go through (with all it's anxiety, sedation, scarring, etc), and recovery
- And whether you go through radiation after chemo, or without having had chemo--you breast tissue will burn the same way, and you will have to get yourself to the hospital every day as well.
- And hormone treatment is no "skate in the park" for anyone either (and in your case it may even be harder to stomach the side effects and risks of taking the meds, because it may not be so clear that you will truly benefit from it, etc, etc
- Also, everyone of us has their own life experiencs that have gone before this BC diagnosis which color how we react, and how we are able to deal with things. And some of us have more support than others going through it which can make a DCIS diagnoses much harder than another person may think or realize
- And so on...the list is endless....so, you have every right to be anxious, fearfull, sad, etc...

Oh, about your question about grade: there are 3 grades of bc: grade 1 is least agrrressive, grade 3 is most aggresive--you are in the middle it seems.

We are here for you, and will help you through.
Hugs

Lynn Smith
Posts: 1265
Joined: Mar 2011

I was dx with DCIS almost 2 years ago. I am Stage 0 and my tumor was 1/2 centimeter.Don't know what grade or anything else.Just was told DCIS, Stage O tumor 1/2 centimeter.Doctor said my cancer will not spread to the other breast or other parts of my body BUT I can get other types of cancer.I recently asked my onclogist about bone mets.She said my cancer will not spread to the bone.I read on here that many do have bone mets so I was concerned and why I asked.

For my treatment I had a lumpectomy.Then as they were prepping me they found another tumor.It was benign.So first tumor malignant and second benign.Then the surgeon asked to do another surgery to check margins.I was fine with that to make sure it was all gone.Had that surgery a few weeks later and I found a tumor 2 days before that surgery.It was benign.It was a roller coaster for all that time but I stayed strong.I needed to be strong to make it through the surgery without being upset.I didn't cry during prepping or as they took me into surgery.I think this was the first time I had ever been that strong.Had other surgeries but always cried.

Now I have my crying bouts almost 2 years later. I think, then tears will flow or my eyes water. There is a time I will feel better but not right now.There is a family history(mother a 60 year survivor, niece a 6 year survivor).Friends that are long term.One 16 years and the other had a very fast growing cancer but has made it almost 7 years.And I still have classmates and friends who have passed with bc or other female cancers.Some at a very very young age before they had all the things they have today.

Like what has been said.We are all different.I see where you will be having surgery.Then also lymph node surgery,radiation and meds.I didn't have but the 2 surgeries(one lumpectomy and one to check margins).No radiation or chemo but taking tamox for 5 years. Radiation wasn't offered but my breast surgeon discussed my case at a convention.This was decided. He wanted to be sure.He was late in getting my dx and he wanted to do the right thing and ask what others thought.

I think our bc is one of the easiest to treat.Most don't need chemo but many have radiation. I didn't have radiation but see only a few that have been dx with my DCIS didn't need radiation.Very few.When I read those that are getting it I wonder.I was dx at 62 so I am older than you.But my goal is to live 30 years.

It was explained my DCIS was non invasive, a wall there where the cancer will not spread to the rest of the breast or to the other breast. I believe though I can get a invasive cancer.

I'm also not getting the blood test annually that checks numbers if the cancer has developed somewhere else.I asked my oncologist why I don't get that test.She said it won't spread but if I want the test I can have it.I asked people on here and they said the blood test can be wrong many times. It can say you have a recurrance and don't.Or it can say you don't have a recurrance and you could.Not conclusive.

WELCOME. I've learned so much here.

Lynn Smith

deeb111
Posts: 139
Joined: May 2011

Hello 47 yrs old and i was just recently diagnosed also ur feelings are not and should not be mini mized by anybody cause no one can walk in ur shoes unless they r in the same place so dont feel like ur acting ridiculous because i too went through and still do an onslaught of emotions its like a roller coaster u wished u never got on and they wont let u off just yetso hang in there come here to this room where all of us speak of how we feel and understand and if it helps u i was also givin good prognosis stage 2 invasive ductal carcinoma so do what needs to be done take one step at a time and feel how ever it is you feel good luck saying a prayer for u

sbmly53
Posts: 1496
Joined: Jan 2010

It is so normal to be scared, even if the prognosis is good. The 'what ifs' will get you every time. Even after surgery, radiation and given the all clear, we still experience anxiety. It gets better.

Sue

margz35's picture
margz35
Posts: 53
Joined: Apr 2011

Hi Becca:
We just about have the same diagnosis. I was diagnozed in Dec 2010 with DCIS Stage 0, Grade 3. I had a mastectomy in March 2011 as the breast MRI I had (I encourage you to have one) found more areas of DCIS in the same breast and nothing in the other.
When I had my mastectomy I also had 2 sentinel nodes removed under my armpit. Again I encourage you to talk to your surgeon about having this done. That is what saved me.
My tissue came back with clear margin's but a small amount of invasive cancer was found in my 1st sentinel node. Therefore I had something that was NOT detected in my mammogram. I then had 6 more auxiliary nodes removed on March 31 - they were all clear. As was the all the blood testing, bone density and full body MRI.
I met with an oncologist who recommended the minimum about of chemo - great!
I then went ot UCSF and got a 2nd opinion and she too tested the lymph node and agreed with the chemo.
I started chemo on May 2 - 4 x rounds of Taxotere and Cytocin to bring my odds down from 42% to 10% - I had my 2nd one today and even tho my hair is gone and I am rocking my wig - I would not have change my mind for ANYTHING. My last one is on July 1.
Hair will grow back and I am fortunate to have my life and see my soon to be 5 year old son grow up.
Becca: my advice to you is to surround yourself with trusting family and friends and ignore your niece. She sounds incredibly insensitive.
Please feel free to email me if you would like to chat more. This discussion board has helped me immensely.
Take care,
Margz

Ritz_123
Posts: 1
Joined: Jan 2013

Hi Margz,

Hope you are doing well.  I'm reading your post from Apr 2011 and I see some similarities between your experience and what I'm going through now.  You sound so nice.  Thought I can get some advice from you.  I've just been diagnosed with a bad case of DCIS (High Grade, 1.8 cm, HR 1+, 10%).  I'm also worried that there may be an invasive component because I can feel a small lump in the area where microcalcifications were found on the mammogram.  I'm trying to decide if I should have a lumpectomy with radiation or a mastectomy (leaning towards mastectomy).  What was your rationale for choosing mastectomy?  Also, you went through chemo to reduce recurrence odds, but not hormone therapy.  Was it because your DCIS was HR negative? 

Regards and thanks,

Ritz_123

 

becmag69
Posts: 7
Joined: May 2011

Where do I begin...I can't find the proper words to fully express how I feel. Thank you all for embracing me into your circle, for your advice, for sharing your stories, and for the support.

I am trying to keep positive but also be realistic. I am afraid of the possible challenges I may face but I know I will get through it. In a week I will know more and make decisions about my surgery and treatment.

I will keep you posted.
Thanks again!

Abrazos y Besos,

Becca

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Becca,
No ones cancer is easier than anyone else. We are all different in the treatment but it is never easier. DCIS is a good time to catch the cancer. Finding this website early is a bonus to you.
I agree with others, you should bring someone with you to all your appointments. I know a lot about cancer, I work with radiologists and I still didn't pick up some of what the doctors said. Fortunately, my husband or my sister was with me for each appointment. Also, Kaiser's practice is to print out a summary of the appointment at the end and give it to the patient. I just remember being terrified till I actually started treatment. I think the unknown is the worst part.
A friend of mine told me "You will find strength you never knew you had" and see was right.
All the best on this journey,
Cindy

disneyfan2008
Posts: 5584
Joined: Oct 2010

I brought two people to my appts for more ears..I was ok listening and then much of it went to a blur. Later I could ask my hubby and friend things I missed or mis-understood...

 

Denise

 

I found this site about 2 yr afterwards..I wish I had found it at the start of it all.

becmag69
Posts: 7
Joined: May 2011
cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

welcome to the site. I'm sure you're feeling a bit overwhelmed at this point. I'm the 5th in my family with bc. One of my sisters was dx with DCIS almost 10 years ago. She had a lumpectomy and rads. She took Tamoxifen for 5 years and was doing well until last year she had a recurrence in her other breast. She had rads again but since she is now menopausal & has osteoporosis she is on Evista. I had Invasive Lobular Carcinoma, no lymph node involvement, bilateral mastectomy June 2010, 6 rounds of Taxotere/Cytoxan and 28 rads. Am doing well now and watching my hair slowly grow back. It's all doable. We're here to listen, support, encourage and supply info when we can. You are not alone.
{{hugs}} Char

disneyfan2008
Posts: 5584
Joined: Oct 2010

I LOVE MY DR...BUT WHEN HE TOLD ME I HAD BC...HIS EXACT WORDS WERE: well it is NOT bad but IT is not good. Told me DCIS and call a surgeon.

 

I started looking it up on line....and first word I saw was CANCER... like really? wowo...

I left notes on counter (not thinking) and my then 16 yr old found them-looked it up and called me all upset!

I had lumpectomy and radiation. On tamoxifen now for 4 yrs...(I had hystercomty last year due to known possible side effect) I had breast surgery again 2mths ago due to ultrasound found something suspisous. TURNED OUT to be scar tissue-happy to say.

 

I have been told WELL IF YOU HAVE TO HAVE CANCER DCIS IS THE ONE TO HAVE..

 really??????? come on ...really?

some people say to me OH JUST DCIS! LIKE not cancer, no surgery, no treatments...

Denise

 

try keeping a journal..helped me a great deal , though at the time I thought it was silly..hind sight  I see it as helpful

 

Lynn Smith
Posts: 1265
Joined: Mar 2011

I heard the same thing.If you have cancer DCIS is the one to have. BUT I really prefer not to have any cancer.

After dx I would happen to mention the bc to people.The reaction was OH I'm so sorry.How are you?? Is it OK.I come back and say fine.They got it all and I'm stage 0.No spreading.I guess I just had to get it in  because I don't want pity.When I get pity I feel they beleive I'm not going to make it.  

I've had my share of scares since DX.It hasn't been that easy. Like with you Denise. Your hysterectomy and recently your scare with another tumor.They've found a total of 3 benign tumors since my dx in 2009. I've decided I'm keeping it to myself, family and close friends.Dont want rumors to spread.Like now some ask me if my cancer is back since I lost wieght.I get tired/mad at that.I then go to my doctor and was told I'm fine. When others look at you as having cancer they tend to think we're not in good health.

Lynn Smith

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

This board is made for people like us!  There are so many nice people and tricks, I hope that you are doing ok.  We are always here for you.  I am 42 and was diagnosed with the DCIS in May 2011 after my first mammogram, treatment until just last month.  Complete bilateral mast + recon, bc has left me a changed woman.  They fix us up at the Dr's and then our emotions are left to catch up.  Not easy, I have realized that an apology goes so far to make us and those around us feel more accepting.  Some people will never come around, and that is their cross not to bear.  Focus on the good you can do, forget about the rest.  Energy is precious, and so are you!

I have had to abbandon friendships that were unhealthy.  It's ok, you need to do what is best for you.  I am still surprised that these people let me abbandon them!  It is a shocker to find relationships fade so quickly, but that is our evolution at work, weeding out what is not necessary for us.  New people will grow into our lives.

If you have faith is your medical team, that should help with your concern about surgery.  They are highly trained, and unfortunately, are experienced.  Also, this board is wonderful.  

Annie

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