terrified

laurakay · February 2010

I'm having a hard time calming down today--a day that seems full of bad omens, etc. I settled into the idea that I have DCIS, that I will have a double mastectomy, but now have become convinced that this has spread, and I'll find that out next. How does one keep calm? How do they know this isn't in my blood? Does that even make any sense...? klonopin isn't helping, and I can't drink and then drive to get my kid at school!!

zoegr · February 2010

First of all, you have to calm down. If it's just DCIS is good news. This mean that is not yet cancer but a precancerous condition. How did you decide to have a double mastectomy and not lumpectomy?

laurakay · February 2010

It's 'diffuse' and my breast is small, so it would be very hard to get it without a mastectomy. I thought, then, if I'm having one I'll have the other. I'm just so scared that they're wrong, and that it's not 'in situ'--everything else has been scary, grade three, comedo, the diffuse stuff....

mom3band1g · February 2010

I have to respectfully disagree with zogr. DCIS is cancer it just isn't invasive. I know many people refer to DCIS as the 'good' cancer. I hate that phrase. I don't think there is such a thing as good cancer. laurakay - you are in the worst part of this. You don't have all your info yet. Not knowing is the hardest thing. The only good thing about DCIS is that it is highly treatable. Breath, you will get through this. Trust me, I was freaking out not that long ago. One step at a time. Hope you meet with your surgeon soon and you have someone you like and trust. I always feel better after I meet with mine. You will be OK!

AlohaGirl · February 2010

Hang in there, Laurakay. It does get easier. At least for me, the waiting for test results and developing a treatment plan was the most difficult part. Once I had a treatment plan I was comfortable with and doctors that I trusted, it wasn't as hard. The other thing that helped me was accepting that I was going through something very stressful and so I would be anxious and sad sometimes and that was OK as long as it didn't take over my life. I hope you are feeling better soon!

dsj · February 2010

Have you had the MRI yet? That will tell them a lot. I don't think they can test your blood right now for spread, but if you are having a mastectomy they will almost certainly test your lymph nodes. I certainly understand your terror, but at the moment you do not know that it is anything but DCIS. Has the doctor talked to you about the probability of it being more? I realize that it is easier to give this advice than to take it (I'm pretty new at this myself), but if you can, try to deal with what you know rather than what you imagine. It's easy to jump to worst case scenarios, and of course they sometimes happen. But they don't usually happen. I have read about lots and lots and lots of women on this board who have had a diagnosis of DCIS Grade 3 and who are doing really well. Have you read Beesie's posts? She had Grade 3 and a microinvasion and a mastectomy and she is not only fine, she is helping others. I am sure people with more experience will give you better advice than I am able to here. (can you ask your doctor for a different anti-anxiety drug? sometimes you need to try different meds).

Edited to add Just re-read your earlier post about DCIS Diagnosis Today and remembered that you were saying you had to wait 2 weeks to see a breast surgeon. Have you seen him or her yet? If not, can you call and explain how deep your anxiety is and ask again for an earlier appointment? Or do you have a primary care physician you can see and who might be able to get you in more quickly? I can completely understand freaking out if you are still waiting to see the doctor.

GryffinSong · February 2010

I can really identify with your feelings of fear. The time of diagnosis and waiting is one of the hardest parts of the entire process. Our minds, our wonderful creative minds, can run freely with all the "what ifs". Try to set them aside. What is, is. And you'll deal with them as they come along. They're experts at this. They'll test your lymph nodes for spread, they'll test the tumors in your breast, you'll know so much more when they know it.

Hugs to you, sending relaxing wishes, and hang in there!

ananda8 · February 2010

When your fears feel overwhelming, notice how you are breathing. You will most likely find that you are breathing short shallow breaths. Change your breathing to deep slow breaths. Consciously try to relax not only your breathing but also the muscles in your upper body. It will help calm you so you can function. This has helped me deal with my fears and anxieties and I hope it will help you.

BulldogluvrBeck · February 2010

I understand all that you are going through.

I too have DCIS and am having a bilat mx on March 1.

Take it slow, breath, read these posts and keep learning. Waiting is the hardest. I too am so aware of every little pain and think uhoh! But we will get through this. Day by day.

Also for me the posts have been a great support but can also overwhelm you. Read for awhile and then get off, give your mind a chance to take it in and give yourself a break. Listen to great old music, take a walk and breathe.

Hang in there! Hugs and well wishes.

Suzanne3131 · February 2010

Laurakay, I sent you a private message.

robinlbe · February 2010

Laura,

I turned 50 in June....was diagnosed with DCIS this past November. My routine mammogram in October found the calcifications. I have an 18 y.o. son who just started his freshman year of college (three hrs away from here), a 17 y.o. daughter who is a h.s. junior, and a 12 y.o. son.

My DCIS was grade 3 at the main area, and grade 2 everywhere else.

I wasn't able to have my first biopsy done stereotacticly (although I laid on the table for nearly two hours!) because the area was too shallow. I had to have it done surgically. That's when I found out it was DCIS. My breast surgeon DOES call it cancer, however the oncologists (I saw two) both called it "pre-cancer". However, it is treated as cancer because it does have a chance to become invasive. My BS said if you have to treat it as cancer, you might as well call it cancer, you know?

Anyway, my next surgery was two weeks later - a lumpectomy - which ended up being more of a half-breast-ectomy. I, too , had smaller breasts. My BS wanted to get good, clear margins. However, the margiins still weren't clear, and the pathology report showed I had the multi-focal variety....meaning, it had "fingers". At that point, radiation was out of the question, and the entire left breast had to be removed. The BS, and both oncologists I consulted agreed.

An MRI showed nothing further on the right breast. Both oncologists said I would have to take tamoxifen (my hormone markers were ER+, PR+), and I'm nowhere near menopause. I also consulted with a PS, even though I wasn't sure what I would do about reconstruction.

I researched tamoxifen, and didn't like all of the side effects and risks involved. I also had a nagging feeling that the MRI had missed something....don't know why, but I did. Because of my kids' ages, and the expense involved and the time involved with all of this, as well as all of the emotions, I really didn't want to have to do this all over again, in case the cancer did strike my right breast.....so I opted for the bilateral MX.

My BMX was Jan. 6, 2010. I'm at the end of my medical leave now....Did I have anxious moments? yes. Was I scared? yes. But I didn't have the additional worry/concern that you have due to your mother's BC and early death. That is an additonal factor that plays heavily into this for you.

I will be praying for you.....because I know how hard the waiting is. Fortunately, my doctor didn't keep me waiting at all. I knew my results within days, and my appointments were within days. In fact, my initial biopsy was on a Wednesday. My BS called me on Friday to give me the report. I had been scheduled for a two week follow-up visit, however, he cleared his schedule and had me come in on Tuesday to meet with him regarding the cancer diagnosis. He is just wonderful. Too bad you don't live near Lousville, Ky. I highly recommended this surgeon. He does only breasts and breast cancer. He is just THE best!!

As hard as this maybe, try NOT to dwell on this....try NOT to think the worst. In a bad situation, you have the best possible outcome...truly! It's not fun, I know. I look at my flat chest every morning and I miss my old self. I really do. I miss my breasts, even though they weren't huge to begin with. But I know it could have been far worse. I didn't need chemo. I didn't need radiation. I'm not taking drugs that cause all kinds of problems. My cancer was caught BEFORE it became invasive.

You have a 14 y.o., right? We started making boob jokes, esp. when we thought a MX might be in my future. Of course, it was NOT funny as the time got close to my surgery....but to help my kids get through it (and to help me), we laughed....we joked about painting my boobs gold and hanging them over the fireplace and decorating them for Christmas and singing "oh Christmas book, oh christmas boob".....

after my surgeries, I'd talk about my "boobie boo-boo"......may not sound so funny, until you know that in our family, we NEVER used the word "boob"......

Anyway....you'll be in my thoughts and prayers. If you want to PM me, feel free to do so...

Give this to God...let others sustain you.....this is when your faith will carry you.....

blessings...robin.

Suzanne3131 · February 2010

Robin ~ Your post reminded me of something that I read one time, that really helps me maintain during times of turmoil and stress. It was about how we tend to ruminate and imagine how things will go....and the point of the article was that when we imagine things (and we tend to imagine the WORST things "catastrophizing") our thoughts cause our bodies to have the same physiological response that it would have if the event were actually happening, complete with illness-causing chemicals and hormones). In other words, our bodies do not distinguish our icky thoughts from reality....so for the sake of your physical health, it is important to try to stay out of the realms of scary thinking.

shelleydodt · February 2010

Find out if your DCIS path report says if you are estrogen positive, progesterone positive or Her2/neu positive. IF you are her2/neu you can get in a vaccine trial at the University of Pennsylvania by Dr. Brian Czerniecki. I had it and the vaccine totally ate up all the DSIC cells. It actually changed my immunity so I don't have to worry about any "other" cells that may be wandering around in there. It is normal to be worried, I was. I had to get put on Lexapro and felt much better on it. For me, I tried to find the leading expert and was lucky enough to find Dr. Czerniecki. If you are estrogen postive, you can get a lumpectomy and take tamoxifin to prevent it. You are lucky because your cancer is still very very early in the curable stage. Keep calm and do your research and find the best doctor you can.

anony · February 2010

robinlbe, do you mind telling me the name of your Louisville breast surgeon. I live near there and think I may need to get a second opinion. thanks

3monstmama · February 2010

laurakay,

If the doctor says it is DCIS, then your cancer is, by definition, contained. And yes its possible that there is something else but honestly, that is just not likely. Even if there is something else, look how early its all been discovered. Early detection is the key to survival and cure. That said, I can understand the panic---been there done that, waiting stinks. Do you have a friend who can pick up your kids?

I think the most important thing is to feel comfortable with your surgeon. And if you don't, don't feel bad about finding someone else. The first surgeon I saw said that the amount to be removed was the size of an egg! That put me and DH into shock as I'm not that much bigger than an egg! A doctor friend told me that I should get a second opinion so thats what we did. I saw 2 plastic surgeons, the oncologist and a second surgeon. The second surgeon made me feel very comfortable and thats who I went with. Do you have other options for medical opinions? Is there a breast center near you?

The other plus of a breast center is the access to all the other resources. My surgeon's office set all my appointments for CAT scans and the radiation oncologist and the oncologist and they even hooked me up with a therapist who specializes in people with cancer. I've only had two appointments but I feel so much better.

Take deep breathes. Its scary as hell but you will get through it.

sunnyhou · February 2010

I am 38 with two smal children. Ages 18 months and a 4 year old. My mom also had BC 14 years ago but is still alive and kicking.. My dad's mom and sister had it.. neither died from it.

I was diagnosed in July 09.. I was where you are right now. Literally. I thought my husband was going to have to admit me to the pysch ward. I was losing it. I lost 20 pounds over six weeks waiting for my surgery. It was by far the darkest time in my life. I spent all my time on the computer reading boards and looking for things that would tell me it had not spread and would not be in the lymph nodes. I was convinced I was going to die. I had my first appt with the plastic surgeon on my son's 1st birthday. I thought this is so unfair. My mammo estimated my size to be 4.7 cm, the MRI said it was closer to 5cm. I had a double mastectomy on 9/1/09 and it was 3cm with negative nodes. THANK YOU GOD!!.. so, what I am saying here is .. I wasted 6 weeks while I waited for surgery worrying about something that never happened. I lost that time and can never get it back. I chose mastectomy because of my family history and because It gave me a chance of recurrance of less than 1%. No more mammos.. EVER AGAIN!!.. I did a skin sparing, aerola sparing mastectomy. I just had my exchange to my permanent implants and let me tell you.. I look good.. I was unhappy with them the days after surgery .. but two weeks later.. they look awesome.. much better than I looked before..

so.. CALM DOWN!!!!!!!.. take a deep breath. It is DCIS most likely and once you do your surgery.. life will go on.. It has been 8 months since I was diagnosed.. and you will be ok..

keep posting and we will keep suporting you.. if you need more talking to. I will even give you my phone number..

hugs..

robinlbe · February 2010

anany, I sent you the name of my BS via PM.....blessings. robin

blondiex46 · February 2010

it does make sense, when you are hit with cancer there are all kinds of emotions and there are no right or wrong way to deal with it. You know yourself better than anybody else and what works for you and how to calm yourself down, whatever it is, build a support system that you can call or visit....come here.

Sandy

aces · February 2010

laurakay..I had a BMS on January 26th for DCIS. Similar situation as you.....my DCIs was close to the chest wall and my breast were small. I had immediate reconstruction. I was back to work after 2 weeks. I still get a little tired but over all I feel good and I must say I am liking my new "foobs." I can alos tell you that the weeks leading up to my surgery were just like yours....spent hours on the computer...and lots of time thinking about the whatifs. For me I felt better emotionally after surgery. My prayers are with you.....

wbuggie · February 2010

Hi Laurakay,

I have not been on the site for awhile now but saw your post and wanted to response. I like you had the "precancer" but with two extensive biopsies with no clear margin and it was sent to a specialist to determine a course of actionand still inconclusive.

I too had small breast and with all that was removed and STILL no clear margins...and the help of an oncologist I respected, decided for a BMX in March. The reality is, there is only so much they can remove without leaving a decision anyway. I truly understand where you are at now as the waiting and wondering is the WORST. I also imagined the worst as I was a birad 5 and was not initially give a great prognosis. With that said, please remember that we are at such an advantaged stage of what can be done to get rid of this monster and the options we have at hand. I know you don't feel like a "lucky one" with what you are facing but we are the lucky ones as we can say no to radiation (for me, not a consideration to do over my heart) and not have to endure what so many here have in the course of chemo. I am a single mom who was in the midst of the dating scene and thought my world would end.... NOT SO!! There are great procedures available now and no doubt available in your local area if you do some research. I was bound and determined to have a skin and nipple sparring and with research found a wonderful local team to do exactly what I wanted. I am now almost at the end of this and have only brief moments of "what if". I will have my final exchange on 3/3 and am so looking forward to no longer being a "one tit wonder" :-) I did have one exchange that needed to be redone but went along smoothly and with little discomfort.

My daughter was 14 when all this started (just an end of the year mammogram with no family history... not even close to being on my radar) and I was determined to show her that life could and would go on. I too made my "boob" jokes as it was a way to get her to focus on the lighter side of things and know that this was not the end of life as we knew it and to also let her know I would be perkier long after her :-). I also was up and at her regatta 5 day post op. I don't share this as a "super woman" mentality but offer this as a showing of how manageable this can be.

Now as I enter the final stages of this journey, I can tell you I was where you are now and can offer you hugs and understanding but PLEASE do know that with DCIS, the chances of any of this having moved outside of your breast is very remote and the prognosis should be excellent.

I will leave you with saying, I agree with the others advise, please be comfortable with the surgerical team you select. If you have any reservation... move on. Don't worry about hurting feelings as this is your journey, your body and fully your decisions.

I will pray for you daily and hope you find peace in your decision. Hugs to you and please feel free to PM me if you have questions, concerns or just an ear to listen as you travel this path.

Love to you and hang in there!!! You have lots of support here!!

wbuggie · February 2010

Laurakay,

Just one more comment. Before you decide on your surgeon, please also ask where they perform their surgery and where they have hospital privileges. You do want to be certain, at least from my vantage point, you are not getting one of the "drive by MXs". One of my TEs was done at one of these facilities and as "nice" as it seemed.....you want to have your MX at a hospital and have time to spend recovering. Your surgeon can assist you with getting a few extra days in the hospital if you feel you need that. It is THEIR option... not your insurance carrier. I spent 3 days and would not have wanted it any other way. I do NOT think we should be sent home immediately afterwards.

Just to be fair, I am told some women prefer that but......

MariannaLaFrance · February 2010

Take a big, deep breath and try to focus on what's the most scary thing about your situation. I also thought I was dying to the point where I actually started having night sweats...... oh, the power of suggestion. I found that lots of baths, meditation (first ever doing this for me), prayers (starting to say the rosary again) and yoga / dancing helped me through it. At least I could get my attention to focus on something other than cancer for about..... 2 mins with those distractions. It's impossible to keep your mind from wandering over there, but do keep something in mind. Breast cancer, when caught early, is curable. Modern medicine can get you to a good place. A different place. DCIS is probably a better diagnosis, but it still sucks. But you are alive.

As for blood markers, I had the exact same freakout. Why didn't they look at my blood for cancer markers? And when they FINALLY took some, it was 2 hours before surgery, and all I was told was that my blood looks "fine". Well, what does that mean? My BC didn't explain. So, I am on a personal quest to get my blood drawn and tested for all hormone levels, vitamins, etc. Though my OB-GYN. If you have a family practitioner that you trust (or your OB), tell them your story and let them help you through the process as well. If they are all at different locations, get your medical records from the breast center faxed to your internist or OB. You need holistic care, which you won't get unless you put the puzzle pieces together. That has been my beef with this whole process is that no one has looked at me as a whole to determine what could be done medicinally, hormonally, or nutritionally to change things.

I also don't want Tamoxifen, and the more I read about hormones, the more convinced I am that it's not right for me. I am ER+/PR+, but I've learned recently that PR+ means that the PR levels are present because they are FIGHTING the estrogen. So, does that mean I need more PR to defeat what the ER is doing? All questions I intend to ask my docs. Tamoxifen takes me from a 5% recurrance rate to a 2.5% rate, Factor in the new risk for cervical cancer, and the positive effects from Tamoxifen just cancelled themselves out.

Sorry for the rant, but you touched on something which has bothered me greatly in this whole process--- our medicine system, while undoubtedly very good, is a one-size-fits-all approach. And boy, that steams me up!

Hope you're not still panicking. Keep the peace within, hug your kids and get their good energy, and distract yourself. It's the only way you'll be able to get through it.

Take care, and peace to you

MaryAnn

terrified

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