Newly diagnosed and really, really scared. :(

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jewybean71
jewybean71 Member Posts: 14
edited January 2017 in IDC (Invasive Ductal Carcinoma)

Hi everyone,

Just diagnosed with IDC today. Well, yesterday. I am up researching and now everything is blending together. I have only told my husband and my supervisor at work. I am waiting to tell my family (mom, siblings, nieces) until after my appointment Monday 11/07 when they will give me my treatment options. My mom went through this at age 47 (I am 45) and she had a lumpectomy/lymph node removal with radiation. They wanted her to take Tamoxifen but she opted not to, and has been in remission all this time (26 years). I am so nervous. I also have rib pain and it's hard to breathe. Hoping this didn't spread, the doctor said my lump is small (1-2cm) so I guess that's good. Today at 11:30am I am going for an MRI of both breasts to see if there's any lymph node involvement here. I only have certain pieces of information. I know it's a grade 3 tumor in the left breast. It's ER+/PR+, HER2-. I do not know the stage yet. I have hetererogenously dense breasts. I have constructed a huge question list for my doctor. My husband has been awesome during all this. I don't know how to break it to my family, but I wanted to have the "big picture" before I do it. I am rambling. I guess I'm just looking for support and wondering if anyone can share their experiences with cancer like mine and what their treatments were? So scared and overwhelmed. Thanks in advance.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    It is good to be er and pr positive, hormone therapy is a good treatment option. Grade 3 might sound scary but the aggressive tumors seem to respond better to treatment. You may want to ask about oncodx and mammoprint tests to see what your risk of recurrence is and if chemo is recommended.

    Things will get better once you start your treatment. Sorry to hear of your diagnosis. Take care wish you the best.

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  • tlgio17
    tlgio17 Member Posts: 191
    edited November 2016

    Hi JewyBean71,

    Jus saw your post and wanted to say hi, I was just DX 10-23 with similar size as yours. Same characteristics as well. Totally understand the feelings you are going thru as I am as well. I am finding comfort in this awesome site and chatting w others who have the knowledge and strength to help get others thru all this.

    So far, I have had biopsies and MRI, next step for me is CT/Bone scan which will determine if spread. Also tested me for the BRCA gene (waiting results). Once I have all my test results back, Dr said they will review treatment options.

    G luck w your MRI, wish you the best!!

    Traci

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  • dtad
    dtad Member Posts: 2,323
    edited November 2016

    Hi there. Sorry you have to be here but welcome. I know you will find this forum both comforting and informative. You are presently in the most difficult part of this process. I promise you will feel better once you have all the facts and a treatment plan in place. Telling loved ones is always difficult. The fact that your breasts are dense means the MRI is the most accurate tool for diagnosis. Lists of questions for doc is a great idea. My only other suggestion is to make sure you are treated at a university based teaching hospital or at least get a second opinion at one. Good luck. We are all here for you. Please keep us posted...

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  • Kat104
    Kat104 Member Posts: 30
    edited November 2016

    So sorry for your news jewybean. I was diagnosed 10/6, and I also think (at least so far) that the first 1-2 weeks were the hardest. I've felt better as each unknown turns more into a known. I also let myself get emotional, and ironically it helped settle me mentally. Getting through these first few days is evidence of your strength. Take care, and ask any question here in this forum. It seems to be very helpful.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited November 2016

    So sorry - you are in the hardest part...waiting for a PLAN and knowing what to expect.

    It gets easier because the anxiety does lessen a bit. Sending all the best!!!

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  • RitaR551
    RitaR551 Member Posts: 42
    edited November 2016

    Yes, its a lot to absorb. Our diagnoses is very similar. IDC cell grade 3, left breast. The MRI is a real trip, isn't it! Hope you listened to some good music. Personally, Fleetwood Mac was my choice 😉. MRI gave me the clearest information on if the cancer had spread. It was both concerning and reassuring.

    It was difficult telling family, but the love and offered help have made things easier for me to deal with. I'm sure you will find the same.

    Hopefully you'll feel better once you have a surgery date and plan for treatment.


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  • Warrior4sararyan
    Warrior4sararyan Member Posts: 23
    edited November 2016

    Jewybean,

    I just got diagnosed with IDC on August 2,2016. Sounds like you are doing a good job of getting as much information as you can. I also had a MRI and after seeing the amount of calsifications on both breast I opted for a double mastectomy. I am in the process of reconstruction and have started on Arimadex.

    I say just get all the info you can and go with your gut. Surround yourself with positive people.

    Good Luck in your journey!

    Prayers and blessings

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    hi Meow13

    Thank-you for your reply. I certainly will add the oncodx and mammoprint tests to my list of questions for Monday. Grade 3 aggressive tumors respond better to treatment? Didn't know that. A grade 3 tumor is scary I really hope it didn't spread. Thanks for your insight.

    Julia

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    Hi Traci

    Thank-you for writing. Yes I did my MRI today and I guess Monday we're going over treatment options. I'm kind of surprised i'm not doing more tests first but maybe I will on Monday. Depending on MRI she may go in again and biopsy the lymph nodes. We're also going to talk about genetic testing which I probably will do. Good luck with your results too. I am glad I found this little community because it does help to talk to people going through the same thing.

    Julia


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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    thanks dtad for your reply. Yes I am going to a teaching hospital, SUNY Upstate in Syracuse NY, Wellspring Breast Center. I did research the doctor before I picked her last year. Why do you mention going to a teaching hospital? Just curious. Waiting for my MRI results they said I would know either by tomorrow or definitely Monday . I told my sister today about this and she took it well. 4 siblings and mom to go. I will keep you all posted on my results.

    Julia

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    kat104 thanks for your support this waiting sure is tough but at least I can come into the community and talk so that definitely helps. I also hate being alone with my thoughts I like it when my husband is home. I hope all is going well with you, too!

    Juli

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    thanks Denise-G I appreciate your support!! I am hoping to settle once I have a few more facts about what's going on with me.

    Julia

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    RitaR

    Hi yes our Dx are very similar I am worried about what the MRI will find and no I didn't get any music!!!! The techs were nice though I get claustrophobic but was able to hold myself together to get it done. So nervous about Monday I found out my surgeon is about 2 weeks booked out I just want this tumor out of me ASAP!!!! Thinking of juicing carrots and going on a high protein low carb no sugar diet. I will let you know how things turn out here.

    Julia

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    hi warriorforsararyan,

    Thanks for your kind words and I will definitely let everyone know here how things are going. Thanks for taking the time to write!

    Julia

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    jewybean, exactly I was desperate to get my tumors out. After the mx was done I felt such a feeling of relief. Then the emotional pain of being disfigured took over a couple of times. But when I had the DIEP that pain went away.

    It seems like cosmetic surgery is light years ahead of cancer treatment. I wish I knew how good the DIEP would come out I wouldn't had that emotional pain of doing a mastectomy.

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  • Kimm992
    Kimm992 Member Posts: 135
    edited November 2016

    It is normal to feel scared but as many people have said, once you know exactly what you're dealing with and have a plan in place, things start to get less scary.

    I wanted to add that I too had rib pain as a symptom when I was diagnosed. The cancer had not spread though...so rib pain doesn't necessarily mean the cancer has spread, even though it's a scary feeling.

    Good luck in the coming days and weeks...you are going to be okay!

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  • dtad
    dtad Member Posts: 2,323
    edited November 2016

    Hi again. Just my opinion but I am in the medical field. University based teaching hospitals often have the best docs and the most state of the art equipment. Most of the docs have a PHD along with a MD and are professors associated with the university.Also because they are a teaching facility there is always research going on. Good luck to all...

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    Kim,

    Thanks for the reassurance. The rib pain is freaking me out. Had my MRI Thursday and am going to the dr tomorrow to find out treatment plan options. Boy am I nervous, but I feel a little better knowing you had rib pain and cancer hadn't spread. Trying to stay positive.

    Julia

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  • Jaigern
    Jaigern Member Posts: 15
    edited November 2016

    Hi Jewybean71

    I have a similar diagnosis. I have IDC, stage IIB, grade 3, 2.5 cm with another mass of DCIS comedo central necrosis in the same breast. I am adopted so I opted for the BRCA testing which I am BRCA I positive.

    It is so scary when you first get all the information. At the time of diagnosis, I was having headaches, night sweats, coughing in my sleep but so far all the testing has come out normal. I opted for a double mastectomy because of the BRCA. I am having chemo and will do radiation. If you have lymph nodes removed and need chemo I would suggest the port. They had such a hard time getting IV's on me in one arm. The port made things much much better. Going over treatment options is a big day. You will probably be exhausted after. Try to rest today. It helps knowing that you are not alone with this site.

    Keeping breathing and stay positive. You will get through this one step at a time. Take care!

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  • StaceySue2U
    StaceySue2U Member Posts: 281
    edited November 2016

    Hi, I will repeat what everybody else has said - that this time period you're going through now really is the worst part. It doesn't get worse. The fear of what's going to happen or what might happen is much worse than the pain or the temporary disfigurement or any other part of the whole deal. I remember being TERRIFIED that I was going to be told I needed a biopsy, and the biopsy wasn't too bad but then then I was terrified I was going to learn it was cancer and then when I learned it was cancer that was the worst day of my life (but I didn't know it at the time, I was terrified of what was going to happen next). The MRIs weren't that bad. I was terrified of waking up flat chested after my mastectomy but when it happened it wasn't nearly as bad as I thought it was going to be. I had complications - necrosis of the incision etc. That made me feel terrified that I'd never be able to get my tissue expanders replaced with implants - but 5 days ago I got my implants. I got home from the hospital and one of my drains wasn't working so I had to have it pulled and now I might or might not have to have a new drain put in. Eh - I'm so totally over being terrified!! Whatever happens - happens.

    I was off work for 6 months, because this happened right after I resigned from one job and was getting ready to start another. I was terrified I'd never be able to find a good job again. My house nearly got foreclosed on and my credit rating plummeted but you know what? I'm stil breathing and walking and riding my horses and visiting with the people I love most. I got a GREAT job, with really GREAT people (because GREAT people hire women with breast cancer!) Life goes on! For a little while, at least. I don't know how much time I have left but I'm pretty sure that the fear of how bad something is going to be is always worse than things actually turn out to be.

    It's OK. You'll be OK.

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    Jaigern,

    Hi I am being tested for the BRCA1 also. I asked for a chest x-ray because I'm having rib pain and hard time breathing. Maybe it's just anxiety but my back muscles hurt too. The x-ray was negative which made me feel better. I learned that my surgery will be 11/22 and I will also have a sentinal lymph node biopsy, the dr will only remove 3 nodes. I am glad to have a surgery day now. Can anyone tell me how long the recovery is? I drive an hour to work and an hour to get home. Wondering how long I'll need to take off? I can't wait to get this out of me!

    Julia

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    Stacey,

    Thanks for the words of support. Trying to get used to this. Hoping that the surgery gets rid of everything! Can't wait till it's over with. I find myself having anxiety at night if I'm alone, it's better when I'm around people. I just want to walk my dogs as normal and I also ride horses......I take care of the barn on Saturdays and usually have my riding lesson. I just want to get my surgery and keep with my normal schedule. Hopefully I won't be down long.

    Julia

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    jewybean, you are going to be ok. After surgery you will feel a sense of relief

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited November 2016

    Did I miss where you said if you were having a lumpectomy vs a mastectomy on the 22? The driving will depend on that.... including if you have reconstruction.


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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    beatmon yes a lumpectomy and three lymph nodes removed on 11/22. Today I asked how long recovery is and the nurse said some people go back to work in a day or two. I am thinking of going back the following Monday. It just dawned on me I didn't even ask my doctor about disfigurement or if I'll need a reconstruction.

    Julia

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited November 2016

    I had a lumpectomy and 4 nodes removed on a Wednesday. The next day I was well enough to go out for dinner. Three days later I walked 1/2 mi. to brunch and the beach. On the 4th post-op day, I was driving again. Within two weeks I drove 90 miles each way to give a concert.

    Your mileage may vary, as they say.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited November 2016

    Jewybean, I had planned to take off only a couple days after my LX, but later decided that plan might not be realistic. I'm glad I did. I had some complications, which caused a bit more pain than anticipated. After that, I had to have unexpected re-excision to get clean margins, plus more complications. All told, I was out of work for 4 weeks. I had a hard time driving, turning the steering wheel, so DH drove me everywhere during that time.

    That's a long way of saying, be prepared for anything. You may sail through your surgery or you may have some bumps in the road. There is no way of knowing ahead of time.

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  • Lovemyfurbabies
    Lovemyfurbabies Member Posts: 22
    edited November 2016

    Hi jewybean. I have just been diagnosed with idc as well. I can really relate to how you are feeling. I just want to walk my dogs and I don't like being alone at night. I have only been told I will most likely have a lumpectomy. I will know more when I meet with my doc on Monday. I am planning on moving to receive radiation and chemo which means I will have to leave my job. I also fear other symptoms such as a occasional breathless feeling(probably anxiety) and back pain yesterday. Once you receive such shocking bad news it is hard to stay positive but I am really trying to. I would love to talk as we all can really help and comfort each other on here

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2016

    Welcome to you Lovemyfurbabies,

    We are glad that you reached out here for support and information. We know that this can be a valuable resource as you begin this journey. We hope that you will stay connected with others and keep us posted. The Mods

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  • jewybean71
    jewybean71 Member Posts: 14
    edited November 2016

    hi Lovemyfurbabies,

    Thanks for your reply. I had my lumpectomy and sentinel lymph node surgery on 11/22. Now I'm recovering and am glad the doctor took the mass out of me. Just waiting for the pathology report and genetic test to see which direction to go now. Waiting is definitely the worst! But I must say I feel better now that the lump is gone! Do you know your surgery date yet? You will feel better when they do the surgery.sending hugs to you!!!

    Julia

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