Can I join your club???

KWolf

Hi All,

I got the results of my Wide Excisional Biopsy/Lumpectomy today.  I am sad to say I now qualify to join your wonderful forum.

I was hoping that all I was dealing with was ADH but it looks like the ADH they found on the 1st biopsy was just on the edge of the DCIS.  The size of the DCIS was 3.9cm medial to lateral & 3.2cm superior to inferior & 2.7cm anterior to posterior,  grade, high(3) ER+/PR+ and with 1cm clear margins. 

I have no idea what will happen next other than I am being refered to an Oncologist. My BS has given me some sleeping tablets (Lorazepam) because I have not slept for a whole night since all of this started many weeks ago and I am now just worn out. I have MS also so I did not need extra medical issues to deal with.

I am still getting a bit of discomfort form my left breast and I now have a hollow dip that I can feel if I run my hand over the site where the scar is.  Is this normal and will the discomfort go away and will the normal shape return?

I think I may have a lot of questions to ask here.  I thought once I got the results I would feel better but now I just feel numb..

Thanks for being here..

Kath

IronJawedBCAngel

I am sorry that you have had to join our club.  However, even though the initiation is a bear, its a great group of women and men that you join in the fight. 

The discomfort does go away, but for me it took several months before my breast was comfortable.  My nipple was ultra sensitive, to the point that I had to warn my husband away from it for those first months.  I had sharp shooting pains that my onc said were the nerve endings healing.  I have had a lumpectomy and an excisional biopsy on my left breast and really, it looks pretty good.  I have two small scars that are almost un-noticable because of their location.  The hollow gets filled in with scar tissue which can feel somewhat lumpy and hard, more so after radiation.  I still on occasion get a kind of achey feeling in my breast but I have been told that again is probably related to the radiation.  That seems to be a common complaint of my lumpectomy sisters.  Nothing severe and very rarely happens.  

It really hasn't been that long since you had your lumpectomy, so if the discomfort continues you could try some ice packs.  I had to wear a really good sports bra that allowed no jiggle.  My DCIS was also grade 3.  I had 32 radiation treatments and am just finishing up my five years on tamoxifen.  Other than some mild side effects the first month I was on it, and some heavy duty hot flashes the first few years, I have tolerated the tamoxifen very well.  Weight gain has been an issue, it seems no matter how hard I exercised I still gained weight.  However, overall I am pretty healthy and life is very good.

You are in the scary early stages of this experience and everything can be very overwhelming. Don't be afraid to admit you need some help and some support.  This is a very difficult journey to do by yourself.  I spend time on the Komen message boards and will check there as I know there is a woman who has MS, but I don't know if she has posted in a while.  God bless you and bring you comfort.

wyldblumusic

Hello, and welcome.

Do you have an appointment scheduled yet with the oncologist?  As I'm sure you know, the waiting is so difficult.  I was much more comfortable with the process after I had a specific treatment plan in place. 

After the diagnosis, my appointments with the surgeon and later the radiation oncologist were long appointments.  My head was spinning with information after these appointments.  If you can, it's best to bring someone with you.  Ask many questions, and take plenty of notes.

A few years ago, I had a B9 excisional biopsy.  The scar is barely noticeable, and the dent also filled in some (for lack of a better phrase).

You will get through this.

CrunchyPoodleMama

I'm sorry to have to welcome you here too, but you've found a GREAT community here! I will ditto what Jenn said about the discomfort going away after a while. I couldn't even wear a shoulder-strap seat belt for a while, but within a few months it felt as if nothing had ever been wrong (aside from my 3" scar). As for the dip, if it remains there and you feel it's unacceptable, it may be that you will want to look into fat-grafting (a reconstruction technique that "pads"/reshapes that dip without the need for an implant). But, you may not need that.. like others said it may fill in some.

That is FANTASTIC that you got such wide clear margins!! That bodes really well for you. I don't have any experience with an oncologist (I guess because I declined Tamoxifen) but I'm sure you're in GREAT hands.  I know it's hard not to worry but you're doing everything you should be doing... what got me through was a lot of praying and a lot of searching old threads on these forums. You're going to be FINE!!!

KWolf

Thank you all so much for the welcome... I am still waiting for my appointment to see the Oncoligist  the one I want to see is on vaccation and her assistant will not schedule any appointments until the Oncoligist has seen the referal.  I want to keep all my treatment at Dana Faber in Boston so I will just need to wait.

My family have been great but I went for lunch with my Mom and a old family friend, I was not going to say anything to her but when I went to the restroom Mom told her so on my return I was bombarded with her telling me "You know that DCIS is not real cancer !!! its just the doctors way of discribing odd cells, so its not like you are really ill or anything"  I was so upset I walked out and went home.  My Mom called me later to say how sorry she was that she had said anything..

I guess I will face stuff like that for others..

NotAgain2015

Hi Kath,  I'm just a few weeks ahead of you.  I was diagnosed on 4/28.  It is so odd how people react and tell you it will be nothing or its not cancer.  Others are already writing me off!  I think you are smart to wait for the oncologist you want to work with.  They do say we can take our time to decide.  I meet with a radiologist/oncologist today to learn all about radiation.  It's my left breast so I have concerns about the impact on my heart and lungs.  I think I'm leaning in the lumpectomy (already happened) with rads direction.  There's a part of me that thinks I should do double mast.  Its getting close to the time I need to decide what to do.  Let us know how things go for you. 

KWolf

Hi Kickon2it

I ment with my radiologist today to go over my treatment plan.  I went with the Lumpectomy as I did not want a masectomy at this stage.  My BS agreed with me that the lump + Rads was the way to go.  I have read 100s of the posts from the rads groups to try and pick up as much info as I can.

I have got my appointment with the medical oncoligist for June 1st so I dont have to wait too long do you know if it is normal to see a genetic councelor and the medical oncoligist ?  I have back to back appointments to see them both on the 1st.

There is so much I still have to learn about all of this stuff I still find myself thinking maybe they have all made a big mistake..  I just wish I could sort it all out in my mind.  I know I am not going to die anytime soon but I am still scared..

NotAgain2015

I met with a geneticist also.  That was a very informative meeting for me.  I have two sisters that also have had breast cancer.  One living, one not.  She believes the cancer in my family, is in my generation only and is random (or caused by another gene not yet identified).  I was also tested for the BRCA genes and they came back negative this week.  A big relief for me.

I met with the radiologist/onc today and I'm a good candidate for the prone position and he also wants to do a shorter course - 4 weeks instead of 6, but at a higher dose - with the same cumulative dose.  He said that's how they do it in Canada.  I wonder if anyone here has an opinon....   He also asked if I had a medical oncologist, which I don't.  My surgeon seems to be filling that role.  I go back to my surgeon on 6/2.  Maybe we'll be starting our own June Rads group...

They all suggest lumpectomy/radiation/tamox, but at the same time would allow me to do a double mastectomy if I wanted to.  So that is the alarming part to me.  Should I take the drastic route or not?  If I had any hint of invasive i would do it without reservation.

My sister that passed away had IDC initially and chose lumpectomy and radiation but no tamox.  It helped me to know that.  Thankfully our situation is non-invasive.  For this I am thankful.

Then I wonder about tamoxifen.  Taking an estrogen blocker - does that mean we will shrivel up sexually and age and not feel feminine anymore?  (yes this is my inner fear talking)....

KWolf

wow you are so lucky that you are only going to have 4 weeks of rads, I am going to have 6 weeks of rads. I am not sure about the tamoxifen it has bad SE for some people. I am going to wait and see what the geneticist has to say about my risk. I have pages and pages of questions that she needs me to answer and bring with me to my appointment.



I am so thankful that it in non-invasive (yet there are moments that i fear they made a mistake), I am amazed at how well the women on here that are dealing with invasive cancer cope, they are a true inspiration to us all.



I must admit I dont feel very sexy right now and the thought of tamoxifen making that worse scares me even more, so I hear you big time on that one..