Just diagnosed with IDC.

felinegruvy

Appt with surgeon on Sept 7th. No date yet for surgery (lumpectomy). So fearful of finding out that it has spread to nodes etc. Trying so so hard to stay positive. Crying comes out of nowhere. I feel mostly concerned for my family and friends who are so upset. This is all so new. I find myself saying outloud 'I have breast cancer!' But, also not allowing myself any pity parties. No one is immune. I honestly don't know how to feel right now. Just afraid of the whole coming year and the process that is awaiting me. I always thought that I ever had cancer that I would be strong and positive. I am finding out that this is harder then I imagined. 

christina0001

Everything you are feeling is totally normal. It may not be much comfort, but know that the beginning is the worst part. I cried every day for a week or so after I was first diagnosed. The first few weeks were very, very dark. It wasn't until a few months later that I really started to accept that yes, I am strong enough to get through this. You are too.

NYCMOM3

Hi. I feel your pain. I went through a month of tests (was out of town for work and had to come home every week to undergo tests while trying to appear "normal" at my out of town job!) and just got diagnosed with IDC, 3 days before my 41st birthday. Needless to say, my eyes were bloodshot and puffy for days. It runs in my family, and I've always been nervous about it and had many scares and re-tests, but it finally hit me now.

I also just got re-married a month ago. I was a single mom for a long time, and finally found my best friend. He has been amazing, I don't know how I would have made it through without him. I'm going for an MRI soon and am petrified of all of that, then meeting with a specialist. I don't know how to tell my daughter - she is 11. I can't stop the tears, in fact, just typing this is making me cry. I suppose it will get easier, and once we have more information and can digest what's going on, we'll have an actual plan. For now, I feel like I'm flailing and imaginging many scenarios. I know I shouldn't but it's impossible to stop my brain from running. I lived through it with my mom when I was 10 and she was 40 - basically the age of me and my daughter now.

 All we can do is take care of ourselves the best we can, and not accept what the doc says because they're doctors. Be as strong as you can, cry when you need to, and ask questions! I know I have been and will continue asking away.  

KSteve

Felinegruvy - I was diagnosed exactly two years ago this weekend and remember very well how awful the beginning was. Everything felt so overwhelming. But as the days went on and I had all my tests, got my team in place and started the fight, things got better. It's easy for me to tell you this now, but the time I was in treatment really did fly by once things got going. And my attitude got much better after I started treatment. I guess I finally felt like I was actively doing something to get rid of the cancer. Things will get better, just take it one day at a time. If you have any questions at all at any point, feel free to ask them on this forum. Great bunch of women who understand your feelings, issues, etc., because we've all been there. And I caution you to allow yourself a pity party or two ... And then you pick yourself up and start fighting again! You can do it! Keep us posted on how you're doing. And don't hesitate to ask anything on your mind.

Hugs,

Kathy

liefie

Felinegruvy and Nycmom, you are now at the absolute worst stage of this journey. All of us on these forums have been there in the beginning. It is unbelievable at first, then you are angry, then you wonder if you got it because you did something wrong, then you feel sad, etc. etc. You guys should try your best to stay calm, and to take it one step at a time. Worry will not change the outcome, and it just makes you feel worse. 

As weird as it may sound, you will get used to it. It will not be so scary any more, and you will regain control. As soon as you know exactly what you're dealing with, and as soon as a treatment plan is in place, things will become better. In the meantime you have to be very good to yourself. Eight months ago I was exactly where you are today, diagnosed just before Christmas last year. Here I am now, two surgeries, 4 chemo cycles and 25 radiations later. It was certainly not easy, but I came through it, and my life is pretty much back to normal again. You can do this. There is not much choice in the matter once cancer knocks on your door, but you alone choose your attitude. Big hugs to you both!

FilterLady

Hi Felinegruvy and Nycmom:

Yep, this is truly the hardest part for you both.  I was the same way and it's almost a year since my diagnosis.

I found that I was so much better after all the tests were done and I had a treatment plan in place.  I'm not known for my patience, so "waiting" to get started was the hardest part for me.  I also had frequent "meltdowns" too.  I cried when I felt like crying and it was a relief to be able to do so for whatever amount of time I needed then move on to something else.

Once you get all the info and make a decision on what treatments and/or surgery you need, it'll feel like a weight is lifted from your shoulders.  My family and friends were so worried for me but I felt like "it is what it is" and we all have to play the cards we are dealt in life so I tried to focus on putting one foot in front of the other.

Looking back on all this now, I realize that I was way stronger than I thought and it was easier than I would have ever imagined.  This is just a bump in the road not a roadblock.

Y'all will do great and take my advice, a good support system is one way to help you when you are feeling down.  My DH and I are members of our local breast cancer support group and we are active in fund raising for breast cancer research.  My DH will run in a "high heel dash" again this year when our town recognizes breast cancer survivors.  He's even gonna wear a pink wig and tutu this year.  I'll be sure to post pics of the event.

God bless y'all as you both begin your journey,

LaDonna

mdg

I am so sorry you have to deal with this too.  I felt the same way when I was dx in 2010.  I promise - things get a little easier once you have all the information and know what your path of treatment is.  The beginning was the hardest part for me. Hugs to you....good luck

felinegruvy

You have no idea how much all of your notes have helped me. Knowing that it is ok to cry at the drop of a hat is ok. I too have run thru many scenerios in my head and am so fearfu.l run a small animal rescue from my home and want to be strong enough to care for the sick, abandoned and injured creatures that are in my care. they depend on me. It is quite amazing how they can almost tell that something is wrong. They have become very 'clingy' and anxious when I am not in their site. Thank u all for your thoughts and prayers.......crying right now but, it will pass. Must get on with it and my life. Friday will be the day that will make the difference when I visit with my surgeon to make a date for lumpectomy.

It looks like alot of woman start out with lumectomys and then mastectomys .....that frightens me too.

Waitingforthenextstep

I am newly diagnosed with IDC. Had surgery on August 9, 2012. Will be going to oncology consult on 9/13. I had a lumpectomy and snb, snb was negative. I live in NYC and went to Sloan-Kettering for my surgery. I don't know now, I think I should have had a mastectomy instead of a lumpectomy. My surgeon gave me my records, surgical, diagnostic, reports. It states I had a partial mastectomy. I am not sure why this is.  I am told I will need chemo and radiation. I was willing to have a mastectomy, and now I feel I chose the wrong treatment, though this is what the surgeon at Sloan recommended.  I am still reeling from the difficult experience I had obtaining an appointment, slides, copies of diagnostic tests, before I could even make an appointment. Luckily, once I got in, the surgeon scheduled me the same week for the operation. I have so many questions I don't know where to begin. I am overwhelmed and can't think of anything else. I just don't know what to do.  I'd welcome any advice, especially on the subj. of lumpectomy vs. mastectomy. I am also finding out that some women who had mastectomies do not have to have radiation, or some not even chemo.

FilterLady

Dear Waiting,

I chose lumpectomy with radiation since it had the same outcome (for my type of bc) as mastectomy.  I didn't choose mastectomy (even though I didn't need chemo) because for ME it was too drastic a step.  My thinking was I could "go small" now and IF I ever needed to I could "go big".  I think that if I had chosen mastecomy, I would have been second guessing that decision for the rest of my life and I didn't want to live with that.  

Everyone has to get all the facts and discuss what their options are and make a decision that is best for THEM.  You have to live with whatever decision you make.

I'm happy with my choice and IF the bc ever returns I'll make decisions based on the facts and decide what my best option is.

Please if YOU need help making a decision, slow down and take one step at a time.  Don't let anyone rush you into anything since YOU will have to take the steps to getting back to a new normal life.

God bless you,

LaDonna 

NYCMOM3

I'm hearing more and more women say they went lumpectomy instead, and it's nice to hear about the statistics not changing quite a few times! I don't know how much is affected, I guess I will after the MRI next Monday. I'm hoping that they can just scoop out a few things and put me back together more or less intact. My mom had the full mastectomy and never had reconstruction. I remember how devastated she was, and she didn't say much to me, as I was a little girl, and back then you just didn't talk about that stuff. I wish she had. I will talk to my little girl about it all in a positive way. I need her to be prepared if she ever goes through this. It runs on both sides for her.  

Lifeonitsside

I believe a lumpectomy is considered a partial mastectomy.



I had 15 lymph nodes removed during my lumpectomy and other than some numbness in my upper arm, there haven't been any issues with that. I do have to be careful to not develop lymphedema but I'm not worrying about it 24/7. Just being careful.



I am now six months in and am in chemo and learning that you can live and you can choose how to live. I have an amazing team of people who help and support me, including an amazing boyfriend who I just can't figure out what I did to deserve him. But I choose to live in a positive way and not succumb to letting my whole life become about my cancer diagnosis.



Good luck to all of you and know that you are not alone.

felinegruvy

Thank u all so much for your words of support. My appt. with the surgeon is tomorrow. My daughter in law is going with me. She is a nurse and a tough one at that. My fears now  after 2 weeks of waiting are....breaking down and seeming weak. I don't want to upset my family even more. Has the cancer spread to other parts of my body making it necessary to have chemo? I am not, however, fearful of losing my hair. I have had long hair my whole life (59 years old) and it might be a positive change. But, most of all, i am upset about losing my strength to do the things that are important. I am determined to push thru the weakness. Bottom line......I'm scared and don't want to show it. Meditation has helped a little and I will continue with that no matter what. One question that concerns me is how soon they will schedule my surgery. Also, will I be able to take myself to and from treatments. They are telling me i need 33 daily (off on weekends). I want to plan my day around these radiation treatments. i want to get my stuff done in the am and then go for treatment afterwards so i can rest later in the day. Just how tired will I be? I am also on pain meds for back issues.  Will that be helpful? So may 'what ifs'. I just want it to be over and I haven't even started. Yikes!

lanagraves

feline: I know it's so difficult not to be devastated right now. I remember so well those first few weeks of tests and scans and waiting. It's beyond difficult. In a few days, it will be 7 months since I was dx'd. My surgery happened really quickly after dx, but that was my choice. I wanted it that way. I didn't want any more time to think and worry than necessary. Of course, then it took five weeks after my BMX to get all the scans back and know that it had not spread to other organs and bones. The surgery was really easy. I know that sounds odd but it was probably the easiest part of all this. I had no pain and, emotionally, it didn't bother me either. Chemo was tough, no doubt. I was tired, and I was sick, but not everyone responds that way. Some people breeze right through it with few side effects. I just finished radiation this morning. I had 33 treatments. The radiation oncologist told me I would be tired and very burned. I have not noticed any fatigue at all, other than maybe I get sleepy a little earlier at night. The burns only showed up in the past week. They are painful but not unbearable, and again, not everyone gets those, and, according to my RO, they will heal very quickly. I hate the word "doable", but it's the best word I can think of for it. If someone had told me seven months ago that I would make it this far and still be sane, I wouldn't have believed them. But for now, the treatment is finally a memory, and I'm going to have sushi for lunch and celebrate with my friends! Life does go on, and you will find your new normal. ((((HUGS))))

felinegruvy

Your message has helped me so much. Right now they are saying radiation but i am concerned that it may change to chemo. I was wondering if that is something that most can expect to have to do. Thank u so much lanagraves.....

lanagraves

It depends on your pathology. Have they given you any idea about your stage or grade or hormone receptor status yet?

Megadotz

felinegruvy ,

The beginning is of this journey is very tough and disorienting.  I had panic attacks and crying jags when I was first diagnosed.  My support person is a 12 year surivor off metastic thyroid cancer who suggested that ask for a low dose anti-depressant, it was a very good suggestion.

Be sure to get a copy of your initial patholgy report when you see the surgeon, then get over to the main pages and  get information about what it means.

As several folks have mentioned, radiation is standard for a lumpectomy. I drove myself to and from radiation before I went to work each day -- 35 sessions. I had previously  driven myself to and from all but my first chemo.   As my MO is found of saying everyone is different and there are no guarentees.

The treatement and stage aren't final until the final pathology from the lumpectomy.  I was originally slated for lumpectomy and surgery only, but the final path changed that.  There may be additonal testing (oncotype) if there's a gray area about whether or not chemo would be needed.

It's all swirling around pretty fast at the beginning.  Things settle down once there's a  treatment plan and things are spelled out.   There has been a lot of progess in the last decade to mitigate side effects  for both radiation treatment and chemo.  It's  doable for many of us to work through treatment.

There are a lot of us who've been through this obstacle course and will be cheering you on.

Hang in.

FilterLady

felinegruvy,

I did 35 rads (28 regular and 7 "boosters)  in the morning and honestly the worst part to me was having to get dressed and drive there (thank God only 11 miles one way).  When I went in, I scanned my card (lets techs know you are there) and the longest wait was 10 minutes.  

I walked back to changing room, put on gown, walked to treatment room, got treatment (mine was a total of 2 and 1/2 minutes, at different angles, boosts took about 1 and 1/2 minutes), walked back to changing room, changed back to my clothes and left.  From the time I walked in the cancer center to the time I walked out was about 20 minutes total!

Every Tuesday I saw the NP RO, so that works for my RO so she could check my skin, see if I had any questions or concerns but that appt didn't last longer than about 15 minutes either.

I got a burn under my arm that peeled about treatment #25 but not too bad, it just peeled and boy did I want to scratch it (which is a no no, since you don't want to get a "break" in your skin).  So I told the NP that I would just scratch under the other arm and that as soon as it healed I wss gonna scratch, whether it itched or not, rofl.

You'll do fine, you'll have more strength than you ever thought.  I did suffer from a little fatigue towards the end.  My DH and I have our own business & I do all our paperwork here at home so working was not an issue, but I could have kept a regular full time job if I needed to do so.

God bless you and we'll be here cheering you on,

LaDonna

mdg

I was afraid of chemo and losing my long hair too so when I decided on chemo I decided on cold caps....I was able to keep my hair by using cold caps. I am glad I did chemo and glad I used cold caps.

NYCMOM3

Felinegruvy - I have been crying on and off, and it comes from nowhere, seemingly. I'll be walking down the street, by myself, and BAM! Nothing seems to set it off. I suppose it's normal, I don't like it, but it is what it is.

I had my MRI today. I'm glad it's over with. Now, more waiting. 

 

I started writing a blog. I actually haven't shared it yet - and I'm still fairly anonymous in it. The surgeon we met with on Friday said that most likely I'm not "a ticking time bomb". That all depends on the MRI, of course!

 

http://breastcancernycmom.blogspot.com  

 

Big hugs to you all. And thank you for this forum. I haven't told many of my friends yet, and almost none of them have been through this.  

FilterLady

NYCMOM3,

Yep, ....the crying is perfectly normal.  I still do it from time to time, especially this week as my first post diagnosis mammo is on Wednesday.  I find myself thinking what if........

I'm praying your MRI comes out good.  Please let us know how it turns out.

These boards are a gold mine of info, advice and there are a lot of cheerleaders to cheer you from the beginning of your journey and right through any and all treatments you have.

Take care,

LaDonna

NYCMOM3

Well, it seems that my cancer is not in a nice little lump, but kind of scattered, so I'm most likely going to have to at least have a mastectomy on the left side. They drew blood to test for the genetic markers. I won't be surprised if I have them, but I sure hope I don't, for my daughter's sake.  

Either way, I'm thinking of getting both sides done. I nursed for 9 months. They did their job. Am I crazy to think of doing this if my genetic test comes out negative? I figure, I'll have to recover, regardless. I'll have more chance of symmetry. And, even if it's not a greater chance of not getting cancer again, something in my brain will breathe a sigh of relief. 

 Waiting to get a call back from the plastic surgeon who would do the reconstruction with my breast doc. 

Chrisrenee77

Hi all! I was diagnosed 4 days after my 35th birthday in May of 2012. I went in for my first ever mammogram.  Got my callback the next morning for bilateral ultrasounds (they found a mass in both breasts), while doing the ultrasounds I was informed by the radiologist that I would need bilateral biopsies the next day. As I waited for the results I bargained with God telling him that if He chose me to be a part of the group noone wants to be a part of, I would fight this horrible disease with everything I have. But if He decided it was not where I was supposed to be I would be truly greatful. As my mom, my sister and I and my husband on the phone( he's a paramedic on the oil rigs in the Gulf of Mexico) the radiologist gave me the news. Right breast was just calcified cysts, however the Left breast was malignant.  I broke down after telling my mom and sister that there wouldn't be any crying. I broke my own rule. I went back to work right after that and worked the rest of my shift. I was scheduled for the surgeon the following Wednesday, scheduled for a double mastectomy the following Tuesday. I opted for the DM due to the fact that my Grandmother was diagnosed with the same form of cancer at 31, that and the fact that i was scared as hell of it coming back again. My surgeon at the time of surgery did the blue methaline dye and it had spread to only 2 of my lymphnodes, thank goodness it had not gone any further. I have undergone numerous tests,CT, NM bone scan, bone density study. I was cleared on 6/13/12 of being cancer free.  I just recently 9/11 went in for my expander placements, go for my first fill this wednesday, and hopefully finish up my year with a new pair of breasts.

As far as what you go with for your treatment i wish you luck. I was being talked out of doing my DM by lots of friends and co-workers. I wish you luck with your treatment and your recovery. Good luck and welcome to this Amazing club with lots of amazing people.

NYCMOM3

My genetic tests came back negative! I can't believe it. 

 Talked with both surgeons, and we're just going to do the left side. I was on the fence, but I assumed it would come back positive. Figured maybe less for now. We'll see what the future holds. I'm a little torn but figure you can't undo a mastectomy. 

 Surgery date Oct 24. Expander will be put in. I'm dreading recovery. PS said 4-6 weeks. My husband is receiving an award in mid November and they offered to fly us all down - I will call the docs tomorrow but is it safe to think that I'll be up for travel by then? It would be important for my daughter to be with me and see me function as I do now. If I can! 

http://breastcancernycmom.blogspot.com 

jkwsmama

I was just diagnosed on aug. 29th and had my surgery on my birthday sept. 20th.

I chose a double masectomy just because I think it was the right choice for me and am hoping we don't ever have to go back for more surgeries although I know there are never any promises with cancer.. I too am a bit scared now as I was given good news first that all lymph nodes are negative they took 8 from cancer breast and 6 from non cancer breast and that all margins were clear but he did have to take some of my chest lining as it was very close to chest bone and close to surface of skin.

But then the bad news was that when I first was told via my sonogram it was 9 mm then MRI a week or so later said 11 mm but the surgeon was surprised that by the the time they took it out it was 1.6 cm so he said that I will need some follow up treatment... Which the oncologist said I wouldn't with double masectomy but that was when we were talking a smaller tumor.

Just curious if anyone knows whether it will be chemo or radiation and for how long? I have been SUPER positive this whole time till I got the news of the size and the plan changing now I feel like I am starting to be a bit depressed and unsure like I was when I first got news... Just been a tough couple years my mom passed just a year ago from pancreatic... And I have a crazy week with genetic testing surgeon and oncologist appts... Just want to feel like myself again

Megadotz

jkwsmama,

*hugs*  A lot of us have  gotten suprises  in our final pathology.  From  what  your profile shows, it's likely that an oncotype test will be done to see  the most effective treatment.   ER+/PR+ tumors respond  well to hormonal treatment.  The oncotype test will see if chemo might be a good addition to the treatment plan.  Once the test results come back they'll have an idea of what would be the most appropriate way to go.

The results of the genetic test might point to some other things as well.

Whatever  the results, we'll help see you through it. 

Bobbisil

jkwsmama, I feel your pain. I was just diagnosed, lost my dad 2 months ago to a rare stomach cancer and my sister is fighting a rare soft tissue cancer (stage 4), my mom passed 16 years ago to multiple myeloma.

 I'm looking at the sizes you were reporting. NOT downplaying at all but do you know mm and cm and such? A mm is about the thickness of a dime and there are 10 mm in a cm (about the size of a sugar cube). Originally you were told that it was 9 mm, just under the size of a cube then 11 mm, just over the size of a cube. 1.6 cm is about the size of a sugar cube and a half.

 I truly hope things get easier for you and the depression lessons as you are able to get more information. It seems that the unknowing is the worst.  

Jeaner

Hi all.  I finally got some of my pathology information today and was told I have infiltrating ductal carcinoma as well.  ER+PR+ with the HER 2-.  I am a nurse but the amount of information out there is baffling and you feel like you are swimming through muddy water trying to find the information you "need".  I will be having a double mastectomy next month, by choice.  I had a mammogram one month ago and was found to have a spiculated mass.  That area was removed and it was negative.  However, my surgeon decided to take some additional tissue that felt abnormal and that's where the cancer was found.  It didn't even show up on the mammogram.  I really don't know the size as the surgeon cut out an area larger than 2 cm's likely to get clear borders?  I guess it's my question for tomorrow.  

I thought all along I might be able to get by with just the mastectomies however I was told I should strongly consider chemo because of the cancer being close to my lymph nodes.  I figured it was a matter of time based off of my family hx.  I am pissed more than anything because of the inconvenience it is causing in my life.  I just got a great job and worry about how my absences from work might be perceived for surgeries and treatments.  This freaking bites....