So scared...

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Lovemysons
Lovemysons Member Posts: 31
edited June 2014 in Just Diagnosed

I found the lump about a month ago, went to my GYN last week and had a mammo/ultrasound the next day.  What they saw was suspicious so they scheduled an ultrasound guided biopsy which was done on Monday, 2/17.  I’m not one of the 80% to come back B9.  Found out yesterday, it was positive and I have IDC, it's hormone receptor + and HER2+.  Don't know stage or grade yet.  The director of radiology is supposed to be calling me today.  My GYN’s office already called me this morning to schedule me with a BS but I'm opting to go to a different hospital so they are going to contact someone there to get me scheduled.  I’m hoping I’m not hurting myself more by opting for a different hospital instead of going with where I had the biopsy done.  I’m a nervous wreck.  I have two young boys (12 and 8), a great DH and family.  I'm about 3 months shy of 40.  My paternal gm had breast cancer but she was older when she was dx.  Hoping to learn and gain support from everyone. 

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  • RCR
    RCR Member Posts: 36
    edited February 2014

    Hi,

    You are not alone first of all and the first couple weeks after being diagnosed are very scary! There are so many unknowns and questions going through your mind.  As the appointments keep coming and as questions are answered the anxiety will probably lift a little. I have three young children as well (8, 6, and 4 currently) and was diagnosed two years ago in Feburary. My children, I feel, made it so much worse because I was worried for them and how they will cope with my treatment and of course you think "what if the worst"? Treatments have came a long way and your chances of being ok are much better than not. I found myself not sleeping and crying spontaneously! I couldn't keep put mind anywhere else, it was torture. I promise you will find a new normal and will settle into it slowly. I talked with my onc and he helped me sleep with a RX of ambien and Ativan for anxiety.  These two meds helped ease my mind tremendously to sleep better and go to appointments without so much fear! Don't be stubborn and try to be too tough, your only human. Things get worse if your tired and freaked out all day long:) you can PM me too if you need. Take care of yourself!!!!! It will get better!

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  • Lovemysons
    Lovemysons Member Posts: 31
    edited February 2014

    I'm scheduled for a breast MRI on Monday and have an appt with the breast surgeon on Thursday.  Hoping to get some answers.  Thank you.

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  • mdg
    mdg Member Posts: 3,571
    edited February 2014

    So sorry you find yourself here.  The beginning is the hardest part.  Once you have more information and a treatment plan you will start moving forward.  Just know you always will find support here.  Hugs!

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  • Lovemyboysandlabs
    Lovemyboysandlabs Member Posts: 83
    edited February 2014

    I am going through it too, so know you aren't alone. I visit my oncologist for the first time tomorrow. I had a Pet scan and MRI, so I am anxious about those results. Hang in there and try to stay away from web searching, whenever I do it only makes things thousands times worse. HUGS TO YOU

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  • cascam12
    cascam12 Member Posts: 14
    edited February 2014

    hi rcr. I am so new to this. One month ago diagnosed with stage 2b , 2.5 cm ,3mm lnode. Just curious, how did your diagnoses jump from stage 2 to stage 4 . Was that due to final pathology??

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  • RCR
    RCR Member Posts: 36
    edited February 2014

    hi cascam12.

    So with my original PET and biopsie results after my masectomy I was a stage 2a. I had three tumors  ranging from .5cm to1.6cm with a positive micromet with the sentinel node biopsie and a positive node when five more were taken later.  But with original PET scan there was always a spot on my ilium that was about 5mm. It lit up with every PET scan for the next two years and my onc always said it was too small and difficult to biopsie there.  Then it grew 3mm in my last PET in Nov. 2013. We decided to try to biopsie it at that point and it was confirmed as breast cancer to my bone, so in reality it was there the whole time, just not diagnosed.  My husband was upset about it not being treated, but i have since had it treated with radiation and discussed this with my onc and surg and I feel they chose to ignore it to a point so I could get the chemo and surgery I needed. If you come out of the box a stage four you can run into insurance problems because you are considered incurable and therefore subject to the possibility of denied treatment. There is no way most people can afford all those treatments on there own!  They said I deserved a chance since I am young with little kids and it is just one isolated met that can be taken care of. Now we just hope the chemo did it's job and if there is live cells out there they are very slow growing, VERY slow!!! Sorry for being so long winded. 

    PET scans are very sensitive scans.  How are you doing? What is your plans?  I am happy to answer anything to help. Good luck!!

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  • SoakingSal
    SoakingSal Member Posts: 3
    edited February 2014

    Dear One,  I was also diagnosed at age 39 with the most aggressive breast cancer...9 out of 9 for aggression.  That was 7 years ago.  It has been a long hard journey through chemo and its effects but I want to offer encouragement that there is life beyond breast cancer and great hope for the future.  I am cancer free.  Avoid chemo if you can as it brought me a ton of distress.  I'm not sure I needed it as I was stage 2A invasive ductal carcinoma.  I will never know.  Find the best doctor you can and trust them.  I am sitting here topless as I still suffer debilitating night sweats and insomnia after the chemo induced menopause at 39.  Praying that all shall be well.  Know that the more you can breathe deeply, pray, trust, and be at peace...you will be offering healing to your body. 

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  • cascam12
    cascam12 Member Posts: 14
    edited February 2014

    rcr. It has been a rough month for me. Mammos and sonos for 11years. Nothing ever showed . Jan. This year this 2.5 cm IDC. Depression hit hard. Have to take some meds for that. I have 4 children and unfortunately am having a hard time being the same great mom cause I have cancer on the brain. Original biopsy came back 1.5 cm no ln. Did lumpectomy as Dr advised. Final path. 2.5. One ln. Changes the story, however, Dr said before even thinking mastectomy we must first chemo and radiate, then go from there. Also had peri neural. Don't know how serious that is. Surgeon said gone with tumor, ln, and good margins. Do have some good stuff. No vasculr inc, no lymphatc invasion, Nott graders 4/9, ki67 3plus. fingers crossed. Ever hear of the perii neural stuff???

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  • cascam12
    cascam12 Member Posts: 14
    edited February 2014

    soaking Sal, we can look at it as the chemo has kept you cancer fee for 7 years . That's great! Although it was tough, outcome might not have been the same without Chemo. I am 46 with 4 kids. Anything that keeps dropping chances of reoccurring, BRING IT ON!!

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  • RCR
    RCR Member Posts: 36
    edited February 2014

    I am a full believer in chemo as well, even if it is a rough road. It potentially kills microscopic cells that could be traveling. Surgery and radiation cannot do this.  I have a lot of years left for little things to pop up and that is my best chance of warding it off.

    Cascam, I am gonna have to brush up on my abbreviations I see:) I am fairly new to this site and all these abbreviations!  Not so new to breast cancer anymore. I have no idea what peri neural is??? Can you explain? 

    Yes, I can understand chemo and rads first.  I did chemo, masectomy, then rads. Rads should probably come after surg. If they are on same tissues, because healing can be rough on irradiated tissues, but that is for you and your onc to figure out.  As my surg explained "no one dies of breast cancer in the breast, it is dangerous when it gets out into other organs of the body" so they want to treat body first and foremost in a lot of cases these days.  They probably have reason to be at least a little concerned about that or it can be your age.  I think they jump to chemo on young people to decrease chance of it recurring in the next 40 years. 

    Very curious about peri neural.

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  • RCR
    RCR Member Posts: 36
    edited February 2014

    lovemyboysandlabs and lovemysons

    Keep us updated on your appointments.  Good luck and hang in there!! You are not alone and have a wealth of personal knowledge here at this site.  It will get easier to digest as you go. Focus on making yourself healthy as you follow this difficult road. Eat well, listen to your body and ask people for help if you need to. Friends and family want to help but sometimes are not sure how too.  Hugs!!!!!

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  • cascam12
    cascam12 Member Posts: 14
    edited February 2014

    rcr: Peri neural means there were tiny nerves through the tumor. Got me very scared. Doctor says cancer cannot travel through nerves. Still very scared. Anyone on here ever hear of peri neural????

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  • Xrayalli
    Xrayalli Member Posts: 237
    edited March 2014

    Hello Lovemysons- I wish you well in the upcoming weeks and months. I am 42, I found out I had invasive breast cancer in January. In November it was non-invasive but the mastectomy showed different. At any rate, you have every reason to be scared, I have never been so scared in my life. Every time I turned around I kept getting bad news. I cried everyday, in the shower, in the car, etc. everyone here will help you get through this, though. The BC veterans that pop up here are so helpful, I am willing to help in any way I can. I start chemo either next week or the week after, I am so nervous about the unknown. Hang in there....keep us posted. 

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  • springsoon
    springsoon Member Posts: 18
    edited March 2014

    Hello ladies, yes, I don't even know how to start... Still in shock and disbelief. I am 46, and have been considered very healthy until now. I was diagnosed on February 25th, after the routine check up turned into the suspicious mammogram and then the biopsy.  At first it was DCIS and then the next day the doctor told me is IDC as well. Juggling between doctors' appointments, trying to be a mom to my 16-year old daughter, and working. My husband is very supportive but I can tell he is in shock as well. Bad news keep on coming for the last 10 days - I am now afraid to pick up the phone. There is no official diagnosis yet because doctors are waiting for the results from the surgery. But everything changes so quickly. At first I was told it is probably stage 1 because they cannot feel (neither can I) any lump. I was told that there are microcalcifications shown on the mammogram. Then after the biopsy: DCIS and IDC. No lumps that we can feel, no discharge, nothing. Surgeon opted for the lumpectomy that is scheduled for next Friday, March 14th, but then she called me and told me that the MRI that I took last Tuesday shows "mass" over an area of 6.5 x 1.5 x 3.8 cm, and at least one lymph node looks suspicious. They believe it is DCIS but they also told me earlier that I have IDC based on biopsy (confusing to me) - where is it then? Doctor still opts for the lumpectomy to see what is going on inside because they don't know what part is malignant and what benign. I went for the second opinion (oncologist) and he told me that with such a "mass" he would opt for mastectomy and referred me to the surgeon. I will be meeting him this Monday and deciding between lumpectomy versus mastectomy. It has been nerve wrecking, shocking week. Thank you for listening!

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  • RCR
    RCR Member Posts: 36
    edited March 2014

    welcome springsoon. My heart goes out to you. Sorry about your news. It has been just over two years since I was in your shoes and my heart still jumps if I get a call from my oncologist office. It does get easier though. Answers to your questions will alleviate a lot of tension and as you get a plan developed it will help tremendously. Be honest with your team of doctors about your anxieties. They see it all and can give you options for help with sleep and anxiety. You need sleep to keep your yourself sane! I could go on and on because I especially hate the first few weeks, they are are soooo tough mentally. You will cry at the drop of a hat and dwell on the unthinkable and how it will effect your family members. You will loose sleep and cry somemore.  It will get easier!! You will get treatment, which is scary. It can be done and you are not alone. I have three girl, ages 4, 6 & 8. You will gain strength from your daughter to fight as hard as possible and kids and work are a great distraction and keep you moving. Best of luck to you!

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  • springsoon
    springsoon Member Posts: 18
    edited March 2014

    RCR,

    thank you for your post. Yes, these are very scary moments. My family and my routine keep me sane. I truly would like to know the diagnosis and the plan of treatment asap but I know it will be a few more weeks before I will get there. So, praying and hoping for the best. Luckily, I can sleep. I am so exhausted from this emotional roller coaster that my body shuts down. Planning on watching Nebraska tonight. Heard it is a very good movie. Best wishes to you and your family! 

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  • RCR
    RCR Member Posts: 36
    edited March 2014

    springsoon- Thank You and keep strong! You sound like you have a level head on your shoulders;) keep us posted.

    Lovelysons and lovemyboysandlabs- Thinking about you guys. Hope all is going well and tx is getting figured out for you. 

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  • BCMardiGras
    BCMardiGras Member Posts: 4
    edited March 2014

    Please know that you are not alone and there are a ton of resources to help you navigate through the next few weeks and your treatments.  You've started on the right path by reaching out to this discussion board and searching for answers!  

    Hang in there and good luck!

    Dawn Bontempo

    Author: Breast Cancer Mardi Gras: Surviving the Emotional Hurricane and Showing my Boobs to Strangers

    • Diagnosed 10/12/2012, IDC, ER+/PR+, HER2- at Age 41
    • Chemotherapy December 2012- March 2013 Adriamycin, Cytoxan, Taxol (one round of Taxotere)
    • Radiation Therapy April 2013 - June 2013
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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2014

    Dawn, just curious.  Since you obviously had BC some time ago but just joined the board today, are you here just to promote your book?

    If that's the case, then perhaps a single post in the "Resources" forum might be more appropriate. .

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  • BCMardiGras
    BCMardiGras Member Posts: 4
    edited March 2014

    Oh my goodness No.  I attended a Komen Race for the Cure volunteer event today where we talked about social media and the need for survivors to continue helping those recently diagnosed.  I specifically sought out an opportunity today to give encouragement to someone recently diagnosed.  

    I'll leave my book out of future posts.  I wouldn't want anyone to get the wrong idea….never occurred to me...

    Dawn Bontempo

    • Diagnosed 10/12/2012, IDC, ER+/PR+, HER2- at Age 41
    • Chemotherapy December 2012- March 2013 Adriamycin, Cytoxan, Taxol (one round of Taxotere)
    • Radiation Therapy April 2013 - June 2013
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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2014

    Dawn, thank you for the reply.  And welcome to the board!

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