I'm new to this

Acie

I got my diagnosis Thursday (invasive ductal carcinoma 2.5cm). I had a 3rd biopsy this morning, on a lymph node. (First 2 were the cancer and a radial scar). Should know more on that lymph node soon. Waiting stinks. Seeing a surgeon on Wednesday.

I'm a little lost to say the least. I am trying to work but doing a crappy job. I am trying to be strong but mucking that up, too. I know I will get through this, but have not found the path yet, and I am not used to needing help but know I need some.

Debra1012

Waiting seems to take forever. You are right, you will get through this. Sending positive thoughts your way. As so many say...you've come to the right place for support.

Icietla

Welcome, Acie. We are so sorry you have had this diagnosis.

Now you need to learn about the surgery options that may be offered to you, depending on the positioning and extent of your diseased tissue. The Surgeon will generally describe your surgery options. Your surgery will be planned readily and your treatment will move right along if you already know by then (have already decided) what type surgery would be your preference. This is something you need to decide for yourself, from your own learning, from your own concerns and considerations that are uniquely yours. Take plenty of quiet time alone to reflect and decide on what would be right for you.

I strongly recommend that you get yourself some clinical use masks and wear them whenever you must be in public or in any crowds until the time of your surgery. It would be best if your household members would do the same. Sometimes surgeries have to be delayed because of respiratory illness. Do your best to avoid catching anything of that nature.

Once your treatment is underway, you will feel much less anxious, much less lost -- you will feel better.

Here is a link to our Invasive Ductal Carcinoma section, where you will find more members who share the same diagnosis.

https://community.breastcancer.org/forum/96

NoUGo-CA

Hi Acie,

So sorry that you've been diagnosed with breast cancer.  That is news that nobody wants to hear for themselves or a loved one.  I'm glad that you've found 'us' because as Debra1012 already said this is the place for the best support and most often where you'll find yourself laughing because sometimes that's all we can do.  You're going to get through this no matter what your course of treatment and each step of your journey you'll find many of us right there with you.

Acie

Thanks for the kind words. I really appreciate it. Thanks also for the tip about respiratory illness. I have been fighting a sinus infection for several weeks and been wondering if I should go to the doctor or not. Sounds like a trip to the doc is in order.

grainne

welcome. We were all lost on first diagnosis. Besides abject fear, my overwhelming reaction was complte astonishment. I was diagnosed in feb. I really do think this is maybe the lowest point where you have no clarity regarding your treatment and cannot see a path forward. I hated that sense of bewilderment and dependency and it is really only now beginning to fade.. Then i got definite pathology results, a treatment plan and a prognosis. now that treatment is over, i am trying to adjust to the new normal. I don't know how much you know about your pathology yet but there are some surprisingly low grade subtypes of idc with excellent prognoses. I had a lumpectomy and radiation only and i really hope to leave this behind. Please keep posting. It is very hard at this stage to think of anything else. Please be very sure that if you post, someone will reply. Some of us are half a world away so there is usually someone awake! We are all rooting for you.

Moderators

Acie-

We're so sorry you find yourself here, but we're glad you've found us. This community can be a great source of support and advice for newly diagnosed members. If you haven't already, we suggest reading through our Important Links if Just Diagnosed section, we know you probably have plenty of questions, and there is some helpful information there!

Please let us know if we can be of any assistance!

The Mods

Rufhewn

You are right, you will get through this and life will get back to where it was before your dx. My darkest days were right after diagnosis, then the journey began. My advice, take one day at a time and lean on loved ones, friends and this forum to make it easier. Good luck, sending positive thoughts that all the upcoming information on your situation will be the best news possible (mine was).

Acie

so I learned today I am triple negative, grade 3 and starting chemo in 2 weeks. I really thought I was going to get to start with surgery like my friend who had BC. Very disappointed this evening. Now I need to get ready for 5 months of chemo. Some wine helped my attitude but that's temporary.

Rufhewn

The sooner you start chemo, the sooner it will be over! I had chemo first, then surgery, followed by radiation. By the time I finished radiation, my hair was growing back and I was feeling life getting back to normal. Take one day at a time and trust this is just a huge yucky bump in the road. And there's always wine.

jensgotthis

sorry you find yourself here but glad you found us. You might want to check out the thread for people starting chemo in June. I found it helpful to be with group of women all going through the same thing as me at the same time. I too did chemo first so that we could shrink the tumor and give my surgeon a better chance for clean margins.

grainne

hi jensgotthis. I came across your post by accident. My diagosis was similar to yours: dcis/idc tubular 0/2 nodes er+ pr+ her2- 1.3mm. Do you mind if i ask how it was discovered that you had bone mets if your nodes were clear and the tumour grade 1? I didn't think that was possible. I hope you are keeping well and i wish you every good luck.

Dressage49

I have been just diagnosed, too! I am so grateful to have someone to talk to about this. Once I have my results and decide what surgery I will have, I will feel better, I think! It's making the decision that's taking all my energy! I wish everyone on this discussion board the absolute best results

FeMichelle

Welcome, Your among friends.

I was diagnosed June 6 2016 I'm still in a phase of disbelief. I've been trying to figure out what surgery or treatment paths I want to take. This is the most difficult decision I've ever had to make, and your absolutely correct regarding this being an energy drainer

This site had been very supportive, helpful and very informative to all my questions and concerns.

FeMichelle

Welcome, Your among friends.

I was diagnosed June 6 2016 I'm still in a phase of disbelief. I've been trying to figure out what surgery or treatment paths I want to take. This is the most difficult decision I've ever had to make, and your absolutely correct regarding this being an energy drainer

This site had been very supportive, helpful and very informative to all my questions and concerns.

Acie

I am getting my port today. Not thrilled about it, but my onc team acts like its the best thing since sliced bread. So yay me! Bone and CT scans tomorrow, echo Wednesday.

The best part of this week is I am going to take off Thursday and Friday and go have a fun long weekend with friends. I am so looking forward to that. Then I start chemo.

In the mean time I am trying to find a wig and figure out what kind of head coverings I will actually wear on a daily basis. Any advice in that department would be greatly appreciated. I work from home do I mostly need around the house stuff and things for social activities.

To FeMichelle, I am glad to hear to have choices (I'm a little jealous!) and I am sure you will get great guidance and make the right decision. I was not given any choices really. I was told chemo is the only place to start for me. I assume its because if my aggressive triple negative cancer. Best of luck to you. Keep in touch.

SpecialK

acie - neoadjuvent chemo provides the opportunity to determine whether chemo is actually working - a benefit not available to those of us who have surgery first - we have to take it on faith. This also provides the ability to change regimens if it appears that the first combo is not working as well as your oncologist expects. Grade 3 cells are more vulnerable to chemo as they are more rapidly dividing and the currently used agents seem to work better against it. I wore a wig when I left my house - I never wore a scarf or cap. I wanted to appear as I usually did, and nobody ever guessed that I was ill or receiving chemo. At home I wore inexpensive bandanas, a polar fleece cap to sleep in as your head gets cold without hair - which surprised me. I got a cotton scarf from this company - they have some really nice things, and they are well made and well priced, and a relatively local company for me. I have a small-ish head and their children's sizes actually fit me.

http://www.4women.com/

I had very long hair prior to diagnosis and I had my hairdresser cut it off in ponytails and I sent it to this company and they made me an "underhair", which was my hair sewn to a soft cap at the ear level. I had to wear a hat, but I got some cute fedoras and it looked great. They have human and synthetic ones available if your hair is not long enough to make your own. They also have some other useful hairpieces.

http://www.hatswithhair.com/

I purchased a wig from a specializing salon. My insurance covered the majority of the cost with a written prescription from my oncologist for a "cranial prosthesis" which I submitted with the receipt and a claim form. Some people try on wigs in a shop to see what style and color they like and then purchase online - often it is cheaper that way, but some insurance companies also have partnerships with specific local shops and can bill insurance directly. This is also true for some mastectomy shops that carry bras and prosthetics.

keepthefaith

Acie, If you have an American Cancer Society branch nearby, they will provide you with one free wig, also.

Icietla

Acie, these nice folks will send you a lovely headcovering of your choice.

http://www.goodwishesscarves.org/

sschreier

I am also brand new to the site and dont know where to begin. My mind has been racing since i was first diagnosed on 4-29-16 at age 39. I had a lumpectomy a week later. My genetics came back negative and my tumor was 8 mm with an octo type of 17. I have beautiful dughters at the ages of 16 and 14 and a great husband. I had a choice of chemo and will start July 18. I feel I have to do all I can for it not to return

As I am writing, I am tearing up. You feel like you have to stay so strong for everyone so I decided to reach out to the forum..so much to think about no chemo or chemo has been the hardest question. I am so scared to loose my hair but again feel I have to do for my future all that I can. I have been reading so much on here and finally decided to post

Moderators

sschreier, sending you big hugs We all understand how very difficult this time period is! We're here for you, all the way.

Acie

sschreier... I am so glad you posted. It is all so scary, but it's so nice to know we are not alone. Though I a, new I feel welcomed already.

Don't feel like you have to be strong all the time. You will be stronger if you let your fear and weakness out from time to time. At least that's how it's working for me so far.

I also used some anexity imedication for a few days. That really helped. But I am already reducing how much and when I take it.

I am on my way into surgery to have my chemo port put in, so I have to go soon but let's all keep talking here. It makes me feel so better to know I am not alone.

Icietla

Welcome, sschreier. The fears and tears come with the beginning of it all, we know. It is a terrible time. When you are not feeling so strong, draw on the strength that can reach you through others. Sounds like you have a wonderful support team there at home. You have another support team -- indeed, another family -- here at BCO. Hugs to you.

sschreier

what was really hard was doing the chemo or not....I know for me I have to.I will be 40 in a few days and worried about loosing my hair and struggling with these emotions was never something for the big 40!

Acie I hope the port went okay.Im not doing one at first , going to try IVs...4 treatments every 3 weeks

Acie

happy (early) birthday sschreier!

the port went fine... Very Long day and I'm in a little pain this evening but my team felt it was important and that I would in fact "love" it. Haha! No love yet. But I am willing to give it a chance. I need 4 treatments every 2 weeks then 12 weekly, so I may have more need of the port than you.

I am very concerned about losing my hair but even more concerned about the time it takes to grow back. But I am getting used to the idea. I even tested one of my scarves already and thought I looked pretty good in it. To me its just something I have to accept. I plan to shave my head as soon as the hair starts falling out so probably between my first and second sessions. I am sure that will be a hard day.

FeMichelle

Hello Acie, I am triple positive ER/PR and HER2..... Today I called my Breast Care Coordinator to let her know I had chosen my surgery after carefull consideration I've elected to have a mastectomy. Now I'm waiting for the next step...I'm so confused because I haven't seen anyone besides the surgeon and the BCC I don't no who my Oncologist is.I don't know what's next for me, my recovery, NOTHING I'M CLUELESS.....

Acie

FeMichelle, I hate to hear that you feel so clueless. I definitely feel that way at times because this is so new, but I am also working to stay informed. You can do the same. I started a notebook for all the contact info and notes. I jot down questions and make sure I get answers. I also keep track of dates, locations, and outcomes of every test and appointment. I take it with me to meetings and use it when on the phone.

I also ask for copies of all my tests and take those with me to every meeting and appointment. I am finding that the lab reports in the on-line portals is incomplete so I get the full reports from the doctors.

Don't be shy about asking questions and making sure you are comfortable with the doctors involved and their plan for you. Your best treatment plan could be a different order of events than mine or anyone else's (I won't see my surgeon for another 5 months because they want me to do chemo first). But I learned from my surgeon and my oncologist that they both agree with this protocol. Someone on your team should be able to explain your big-picture plan. Make sure you understand the benefits and disadvantages for each decision you make.

I hope this helps. You can do this.

Golden424

sschreicher - Thank you for pointing out feeling the need to stay strong for everyone. I was diagnosed in late April or early May (can't quite remember right now), had a lumpectomy May 25 but path came back with unclear margins, so I am now looking at a mastectomy. I have an 11-yo daughter. Trying to stay strong to not scare husband or daughter. I'm at a point now where I've had enough time to process my next steps that I feel stronger, but still feel like I have to fake it sometimes - and I'm sure things will change as my next steps actually start happening. This is a great place to just share all the many emotions that come with this territory and find support. Best to everyone

bbbb

Acie - you are so right to stay informed about what is going on with your individual diagnosis. I was so confused when I first went to the oncologist and he spouted of a long list of numbers and letters that described my diagnosis. I was also confused about why I actually needed chemo instead of just radiation, which is what I was first told. I have learned to write everything down, ask lots of questions, and then ask some more questions until I understand what is going on. Because of this I now know exactly what type, grade, and stage of cancer I have and what all that means, why chemo is a good treatment for me and what I can expect. Knowledge has given me peace of mind to know that I and the doctors are doing what is best for my long term prognosis. Knowing that I am doing the right thing (chemo) helps me handle it all better.

Each day after diagnosis is up and down, things are constantly changing, but it does get better and these treatments will not last forever, it may just feel that way at times! We can do this and we will do this and do it well!

sschreier

Golden 424....what stage are you sounds like we have so much in common....write any time...i also struggle with guilt of not being sick enough as I am out shopping for wigs! It is for me so emotional of a struggle