Scared witless

Yrmd, you are going through the worst part. Take a deep breath and stay away from negative people and all the crap out there in google land. I just finished chemo today. Radiation is next. It is a nightmare BUT you can do it! You will find more strength than you thought you had. Let your friends and family help you through this.



Upon finishing my chemo today I realize while it has not been a picnic, it wasn't as horrible as I imagined it would be in the initial stages of diagnosis.



Go for walks and try and get some exercise if you can. It will help clear your mind and you might sleep a little bit better and have a clearer mind to deal with the immense amount of information and decisions ahead.



I'm so sorry you are here. But this forum has some great support and information to help get you through it.



You are entitled to be scared, sad, angry, scream and cry, or how ever else you feel. But don't allow yourself to wallow in the pain. Turn it into positive energy that you are going to need to fight the battle! Dive into the resources on this site.



Try and rest and know I am praying for you to have some peace and strength. These are the hardest days! It does get better. Some days suck harder than others but you can do it - show others behind you how to do it with some swag!!!

ymrd, This is a really good place to be right now. As the others say, stay away from Google it will just scare you more.

You dont have any real information yet except DCIS, small, probably stage 0, all good news in the grand scheme of things.

There is a wonderful explanation of DCIS on this board by one of our very knowledgable members Beesie, maybe take a look at that. It helped me enormously when I was diagnosed.

We all know how terrifying this is, the fear of the unknown is a terrible thing and it just rocks us to the core. You haven't got too long now till Monday when you wiill see the Surgeon and get more information.

It will feel better when you know what is happening, and you'll feel more in control.

It's a lot to take in, but you'll do fine. For now just try to take one step at a time. Take care of your other health issues so you stay well.

Come here often and ask us anything, we are all here to help. We have all been where you are right now.

Sorry you are going through this.  PA has several top rated cancer centers - a couple near Philly, 1 near Pittsburgh for sure - have you spoken with doctors there?  It might be a good place to start...

For the Philly area, U Penn, and Thomas Jefferson are listed consecutively - I know Fox Chase is highly respected, although I don't see it listed under that name,  and UPMC for Pittsburgh area... I don't see CTCA listed at all, so I really can't help with that ..

http://health.usnews.com/best-hospitals/rankings/cancer

Edited to add:  I found Fox Chase - it's listed at #50, so it just made the cut.  The odd thing is that CTCA is not listed even under the alphabetical "rest of them" list, so I don't even know what to tell you about that...

YMRD - a co-worker's friend (DCIS) was treated at the Cancer Treatment Center of America in Philly.  I understand that she had a very good experience there and really liked the personal treatment that she received.  It was also very close to her home.  I received all of my tx at Penn (HUP).  While it is a large university hospital, I found that I received excellent, personal care with top notch drs.  I highly recommend HUP.  Others on this board have used Jeff and Fox Chase with positive results.  Whichever center you decide to use you should be in good hands.

Hi Ymrd,

Just like you I was recently diagnosed with DCIS. NED means No Evidence of Disease and you most definitely want to hear those words after your tx's are complete! Hugs..this stinks big time but we have the "best of the worst" as far as BC is concerned. Best to you in your future with your tx's!

ymrd... if I were in your shoes, I think that I would be checking all the local Philly places for their opinions..from what I remember reading, other than hormone therapy, like tamoxifen, your choices will probably be either lumpectomy & radiation, or mastectomy.  Either way, while the thought of Georgia weather in the middle of the winter is really enticing, radiation is given 5 days/week for 5 or 6 weeks!!  Are you in a position to be able to be away from home for 5 days/week if that's the route you choose? Or, should you make the other choice, would you be comfortable travelling for surgery?   I think I've read that CTCA arranges for your travel & lodging (not sure who pays, though), if that makes a difference. That's a choice that only you can make, though...

This is the hardest part, right now - the learning, the researching, the driving yourself nuts - once you get a treatment plan in place, things calm down, and you can take it 1 step at a time.

Oh, and..if you really want to travel for other opinions, why not consider visiting either MD Anderson in Texas, or Memorial Sloan Kettering in NYC - they're rated 1 and 2 in cancer care in the world.

Dear YMRD,   I also was DX with DCIS in July2012.  That was indeed the most frightful part.  I was given choice of lumpectomy with radiation, or mastectomy with no radiation.  Needless to say, I opted for the Mx so that I did not have to play with radiation.  However, that was my personal choice and yours might be completely different. 

I also did immediate reconstruction, BS left suite and Plastic Surgeon entered to start reconstruction with Tissue Expander.  Which following the Mastectomy route allowed for me.  But all lymph nodes were clear.  DCIS from my reading over the last almost year usually is invasive free.  Take a deep breath, listen to your options and choose what is best for you. 

(((Huggs))) and blessings to you~ - Cindy

YMRD-

When calcifications were found on mammo in Oct (i am 44)- I was freightened, but I have a strong family history of bc. My mother had it twice (she lives in Berks Co, PA).  So I can honestly say, when my biopsy was positive I was some how relieved. If it would have been negative, I am not one to get through the 6 mo check ups and waiting game.  I guess I knew it was coming and I just wanted to deal with.   All along I was told it appeared to be DCIS and it was.  I still choose bmx because of my family history, a close friends expereince and with DCIS I had  good chance a better comestic results if I avoided radiation.

I know that probably doesn't help you, because you probably weren't expecting it as I was.  My close friend who was dx at 41, wasn't expecting it either and it took a bit of time to accept it, but she too some how got in -let's deal with it and get through it mode.  And we both had nipple sparing mast. and she is in love with her new boobs.  Mine look great too so far, I hopefully will get my final implants in a few weeks.  I beleive you will get in the let's deal with and move on mode also.

I must say that mother's care was less than desireable in Berks Co.  She was dx at 41 with DCIS and then at 57 she was in her Dr. office looking at her mammogram and her Dr. told her it was fine.  My mother asked what some little dots were on the film and her Dr. said -well I can biopsy them if it will make you feel better with her bc history.  Turned out it was cancer in her other breast and it had been on all her mammograms for the past 5 years. At this point it was in 1 or 2 lymph nodes. Luckily is was a low grade tumor.  If she wouldn't have asked, it would have just spread.   She had bc at  41 - how could they not biopsy anything that looked remotely out of the ordinary?  My aunt had a tumor in the area by her ovary at the age of 85. Her doctors said it was nothing.  Now at 88, the tumor was so big it was pressing on her colon.  Now the dr said it was ovarian cancer.  I think he just assumed she was old and she die before it was an issue.  She is now getting chemo and doing great!  She is type who is always on the road and still goes dancing.  How dare he just dismiss that tumor.  Again, in Berks Co., PA.

Now matter where you go ask questions and try as many drs. as it takes to you feel great about him/her. 

Hang in there.  You will get through it.  I personally feel guilty that I didn't need chemo or radiation.  I had/have a lot of discomfort with my tissue expanders and I think some women have to start chemo with these beasts in their chests-suddenly the discomfort seems minor.  Best of luck! 

YMRD,

When I was diagnosed with DCIS in 2007 I was terrified too.

The good news is that DCIS is non-invasive, so it can't get out of your milk ducts into your breasts. It also won't spread through your body and kill you. Because of that they don't ever do chemo for DCIS.

I waited 6 months before I had a lumpectomy, while I researched all my options. My surgeon took out a large 1" X 2" X 3" chunk of breast, but my breast still looks good, with only a small dent to show for it.

I got a 2nd pathology opinon from Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use, even if you don't live near him. His opinon saved me from a mastectomy. Also using the Van Nuys Prognostic Index, he calculated my recurrence risk at only 4 percent. I decided that with such a low risk, the 50 percent risk reduction that radiation usually provides wouldn't be worth the risks to me, especially since it can only be used once.

Instead I changed to a largely plant based diet and added many of the foods that fight cancer. I hired a wholistic doctor to recommend and supervise the supplements and bio-identical progesterone I began taking. I increased the amount of exercise I got and reduced the amount of alcohol I drank (from 2 to 1 glass of wine). By making several lifestyle changes, I now have more energy than ever, even though I had always been very healthy.

Also because DCIS is non-invasive, it means you don't need to rush into deciding what treatments you want. Take your time and do what is right for you.

Please feel free to send me a private message if you have any questions or check out my story on my website: http://dciswithoutrads.com/

Wishing you all the best,

Sandie

ymrd, I so understand your fear and worries! I had my lumpectomy yesterday (pain today a 5 out of 10 which is pretty decent although last night was no picnic but mine was deep in my breast so that might be why) and my next appts are with a Radiology Onc and a Medical Onc after my post op appt with my BS. I have been told my tx's will likely be rads and an anti-hormonal  so I guess those of us with DCIS usually are treated the same for this disease, provided we are ER/PR+ as far as the anti-hormonals are concerned. I don't have my path report yet on the lumpectomy so I have no idea if they got clean margins etc. No lymph nodes were checked as it did not appear necessary from my biopsy. We shall see if that changes post path report from the lumpectomy.

This journey is FILLED with decisions from start to finish which seem so overwhelming. Once we make our decision on the tx path to follow (for example, my first decision was whether to have a mx or lumpectomy) we have to just trust that we did the right thing for US, not for anyone else. We all have our own ideas of what risk we are willing to live with. For me, for such a small lesion (no lump, microcalcs) I did not want to lose my breast if I didn't have to and lumpectomy has been found to be equally as effective when combined with radiation in long term studies. For me, as much as I dread those SE's from rads, it seems to be a good option so that I can keep my breast and move on. I don't know how I will feel when I actually finish that tx, so I may be singing a different tune after the fact!

The anti-hormonals are another story. I already have arthritis so I am not looking forward to those but then again, many women do very well and have minimal issues with those too. Since I am post meno, I will likely be given an AI like Femara or Arimidex. I know they come with plenty of complaints so I am preparing for the worst and hoping for the best!

Hugs an know that you are not alone in your confusion and fear about what to do!

Hi Aprill, so glad to hear you got through your surgery and you are doing well.

Take some time to heal now before the next part starts. I am sure you will handle that too. You've got a great attitude to see you through it.

Hi Alyce, lovely name! Lovely post!

hi sweetie, this is the hard part until you geta treatment plan and get all info, you are fearful, but take it from us here who have been there, it will get better, we all been there, I am a 19 yr Survivor this year, and I know the pain the fear and all that but with a plan and HOPE, you will feel more at ease,stay as Positive as you can to all is in place, then it will become better. msphil(idc,stage 2, 3 nodes involved, L mast, chemo and rads and 5 yrs on Tamoxifen) 

Hello everyone. Diagnosed Valentine's day. Lumpectomy and lymph node 4 days ago. Don't know anything yet except "no cancer in the lymph node" and starting radiation in 3 weeks. Going back to work Tuesday. Pain in armpit worse than I thought. Single mom. Two daughters and I still in some shock. Just reaching out. Feels surreal. Like when I look at the scars I think "when did THAT happen?" Any feedback appreciated.

Hello Englishteacher! So sorry you have to be here, but it sure is a great place for support and understanding.

So glad to hear your lymph node was clear! I hear you about the sore underarm too. Fortunately mine was better in a few weeks. Still a tad numb, but no pain.

I really understand your description of the surreal feeling, I have that too. I walk in front of the mirror in the bathroom and go whoa, is that me? It isn't a bad thing, just as you say, surreal and so different.

That's so true LAstar! I couldn't agree more about the transformation, in fact everything you've said rings true for me too. It's like I have a different perspective, a subtle shift. I can, seriously, hear the leaves fall off the trees when I walk the dog. I know that sounds hokey, but it is true. 

As far as your comment about how much our bodies can take. I actually mustered up the courage and watched a Mx on YouTube. I wanted to see what it was about and why certain areas hurt a bit more than others etc. Oh my goodness, I can't believe I didn't have a lot more pain than I did. It was brutal!

We are amazing women!