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  • tallydiver
    tallydiver Member Posts: 15
    edited June 2013

    Hi Cuetang,

    Thanks so much for your rapid response and attention to this horrible situation.  She is in the whirlwind phase now, but is very strong and accepting.  She is more worried about other girls in our family and wants to do the gene testing to ensure they are not at risk.  I have read that IDC is rarely genetically passed along.  My grandmother had cancer at 45 and died at 55.  Anyway, what she is steamed ahout is that she had the abnormal Mammo almost a month ago, and scheduling between Shands and the Women's cancer center in Orlando took so long and it was an agonizing almost 4 weeks and then it took nearly a week for her to call at 4:30 Wednesday afternoon to be told that she has cancer.  This happened yesterday afternoon.  She is not sleeping and is trying to decide what to do, but says she doesnt want it to consume her.  

    I got the line in for her new fax machine that resides in the kitchen.  Tryed to get path report today, but since the test did not originate from the local internal med doc, they could not release it.  Anyway, tomorrow should yield results.  Great idea about seeing both, but they work together.  I wonder if they could be objective.  Was thinking about surgery in Gainesville and Oncology in Tallahassee.  Will be sure to bring copies of her film, ultrasound discs hopefully a MRI scan is coming first thing Monday, after the first meeting with the aformentioned Dr. Spiegel.  Thanks again for your words...I am very impressed with the knowledge of this group.  Who knows how many women it helps keep from suffering.  I am very sad that this has happened, but ready to help her fight.

  • LanaM
    LanaM Member Posts: 41
    edited June 2013

    Just had my MRM Wednesday, and came home yesterday morning. Had 4 nodes removed. Feel a little more sore today than yesterday. Waiting for pathology results is the worst, and won't meet with oncologist until July 3rd. Sounds like chemo is likely due to size of tumor and aggressive form of cancer, not sure about radiation. Follow up with surgeon on 17th to have drain removed & stitches out. Have a work meeting scheduled (out of town) that same week but going to have to see how I feel. How soon do people go back to work? Won't have prosthesis or mastectomy bra for a while so not sure about going out in public - my remaining breast is quite large. Taking this one day at a time......

  • tallydiver
    tallydiver Member Posts: 15
    edited June 2013

    Just got the path report faxed over to me.  I like the stage NHS score of 4 on this, but have been reading about the PNI being present and there is an argument related to its importance in BC.  It would seem that nerve infiltration could be a big deal.  Anyway, please comment on the results as we are all still terrified.  I am doing most of the research at this point.

    A.  Right Breast, core biopsy:

    - Invasive Ductal Carcinoma of Breast.  See Note

    - Nottingham Histologic Score: 4 (Grade 1/III)

      (Tubule Formation: 1; Nuclear Pleomorphism: 2; Mitosis: 1)

    - Tumor Size:  10.5 mm in greatest linear dimension on one core.

    - Lymphovascular Involvement: Not Identified

    - Perineural Invasion: Present

    - Focal Ductal Carcinoma in-situ (DCIS) of breast (<1mm), cribiform type, low nuclear grade, without necrosis.

    - Rare microcalcifications are associated with invasive carcinoma.

    Note:  Immunohistochemistry for SMMHC demonstrates loss of a SMMHC(+) myoepithelial cell layer in the invasive component, supporting the diagnosis.  Additional studies for ER, PR, and Her2/Neu are pending, and will be reported as an addendum.  

     

  • SC60
    SC60 Member Posts: 403
    edited June 2013

    Today was the day my BC finally hit my brain, I saw the chemo doc and was informed I am HER2+ and I will have a port put in within 2 weeks and start chemo on June 24th. I am terrified of the port! The meds known as TCH, or is it THC?, are not nice drugs! The day after my 4-5 hours of chemo I get a shot of Neulasta which I am told has it's own side effects. My spouse is napping, I am crying. Please tell me I'm making a mountain out of a mole hill! It can't be as bad as it all sounded, or can it?

  • Starynights
    Starynights Member Posts: 64
    edited June 2013

    Virginia, Do not be terrified of the port. I didnt get one and had to have my one good arm dug around in for every treament of Taxotere/Cytoxan (4 times) it was a real pain in my keister. Also every week had blood drawn out of my same arm for blood counts (like 20 times)! My arm is now shot to heck and back. Get the darn port !!!! None of them are nice drugs...but they do give you nice drugs to get you through the side effects. It doesnt matter if you get 4 treatments or 40 we will be here to count them down with you and hold your hand ! The neulasta is not fun or it wasnt for me. But alot of the girls have no side effects from it. You read on here how to take the Claritin before and after for a few days. They dont know why it helps but it does. My doc didnt even tell me about it, when I asked he said sure you can take it. These ladies have all kinds of tips that will help you. Dry your tears sweetie...you will get through it.

  • SC60
    SC60 Member Posts: 403
    edited June 2013

    Thanks Starynights! I really appreciate the information. I will check on the Claritin! Sorry about the right arm. My BC is in my left as well which is why I freaked out as it is close to my heart. I think the family heart disease only hits the males, but I will keep my fingers crossed! Hope you all are having better weather down there because the angels are surely crying up here. The rain hasn't done much for my sadness today. Thanks for being here and responding. On to the battle for pre surgery!

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited June 2013

    Sgc~~Starynights gave you great advice. The port is great! I had no discomfort at all with mine. I had local numbing and Twilight sleep for the procedure. I stayed awake and watched it on the monitor. I even slept on that side that night and every night since.



    I finished chemo 3 weeks ago today. I've opted to keep the port for now. One of the oncology nurses asked if I was comfortable with it. She told me to keep it as long as I can. My blood draws always came from it, and all my infusions.



    They give you a numbing cream to use an hour or so before your port is accessed so you have no pain hen either. Piece of cake!



    You can get the generic for Claritin. It's Loratidine. It works the same,but is much cheaper.



    Blessings

    Paula

  • SC60
    SC60 Member Posts: 403
    edited June 2013

    Thank for responding Soteria. You have helped to calm my fears! However I don't think I'll watch as they put it in. LOL. I can watch all kinds of procedures, blood doesn't bother me, but putting something in that doesn't belong there is another story all together! Thanks again for calming my fears. Susan

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited June 2013

    Tallydriver, the report you provided looks good (for BC)--grade 1 tumor, which means it is slow-growing; the tumor is small, no LVI identified.  It looks as if DCIS was found as well.  Depending on where they are located, lumpectomy or mastecomy may be warranted.  But these are good stats; reminds me of my situation--I didn't have to go through chemo or radiation (the latter, because I had a mastecomy; if you have a lumpectomy, radiation is the usual protocol).  You're still in the early stage with all of this.  I can't speak to perineural invasion.  There was a thread on this: http://community.breastcancer.org/forum/96/topic/730556  It won't be until after surgery that a complete picture of what you are dealing with, what your treatment needs are from that point, is revealed.  It requires patience, and acceptance, and to do what it takes to get the cancer out of the body and work toward lowering recurrence. 

    Sorry I've been MIA--I had my first Zometa infusion (bone density treatment) Thursday and it made me sick as a dog.  Good news is, I talked w/my onc about my sleep issues (due to hot flashes), and she rx Effexor, which is supposed to reduce hot flashes.  She said it would take a few weeks to build up in my system, but think it's working already.  

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited June 2013

    LanaM, everyone is different.  I went back to work two weeks after surgery.  It's good that you're waiting to see how you feel.  It's best to heal completely, take things slow.  

  • Cuetang
    Cuetang Member Posts: 173
    edited June 2013

    Hi ladies! Just catching up with some of the posts to see how you all are doing. Took a short weekend trip (compression sleeve and all) and threw healthy eating out the window. Will have to get back on the healthy anti-cancer track upon my return home :).



    Tally diver and sgc728, looks like you've gotten great advice from the other IDC sisters. Hangbin there and keep fighting!



    LanaM-- like Renee said, we all are different in our healing and the types of surgery done. I had my bilateral MX with immediate DIEP reconstruction, so it was way longer for me to get back to work. I could've gone back in 4 weeks, but I needed a mental break too so I went back close to 1.5 months after the surgery.



    Reneeinohio-- hope you feel better now after that Zometa shot! I didn't know those sucked so much. :( .



  • tallydiver
    tallydiver Member Posts: 15
    edited June 2013

    A. Right Breast, core biopsy:
    - Invasive Ductal Carcinoma of Breast. See Note
    - Nottingham Histologic Score: 4 (Grade 1/III)
    (Tubule Formation: 1; Nuclear Pleomorphism: 2; Mitosis: 1)
    - Tumor Size: 10.5 mm in greatest linear dimension on one core.
    - Lymphovascular Involvement: Not Identified
    - Perineural Invasion: Present
    - Focal Ductal Carcinoma in-situ (DCIS) of breast (<1mm), cribiform type, low nuclear grade, without necrosis.
    - Rare microcalcifications are associated with invasive carcinoma.

    Note: Immunohistochemistry for SMMHC demonstrates loss of a SMMHC(+) myoepithelial cell layer in the invasive component, supporting the diagnosis. Additional studies for ER, PR, and Her2/Neu are pending, and will be reported as an addendum.

    UPDATE:
    ER: Pos
    PR: Pos
    HER2: Neg

    Thanks so much Renee and Cuetang for your posts and concern. We were at Shands all day yesterday and met with Dr. Spiguel from Shands and found that she thought that it is a nice littel slow grower and that as long as no sentinel node involvement was observed during the lumpectomy, then the Intrabeam administration of high dose radiation on the site of the excised tumor, should be all that is necessary. She uses a 5cm orbit shaped device to zap with radiation during surgery. Of course, all of this is great news, so far. Rad performed a MRI with some contrast for the nodes to identify any other unforeseen hotspots. Waiting this morning for results...It seems that she is a conservationist and I am very hopeful that this will be our eventual course of action. Here is a link regarding her past experience....

    On the way to the appointment, I called the Moffit Center in Tampa. Dr. Cox is no longer practicing (Doing mostly research) but I had read that Dr. Kiluk was a good one down there.
    Paintedlady and Tideknott both seem to like him and I had read other good reviews. The only thing that is a little bothersome is that he cannot see her until next Thursday. So another almost 10 days before he can take a look. I am having Shands send the slides, films and all results down to Moffit and asking them to fax a copy for our folder as well. (Per the “just diagnosed - get prepared” post. (great stuff) Now we just have to wait on the MRI and to meet with Kiluk. Do you think 10 days more is a problem? I know she would like to get this thing out of her.  They seem to think that there is no rush and are fine with a second opinion.

    I mentioned the perineural invasion and the rad onc replied that they should not even put it on the path report.  (This is congruent with my reseach) BC does not travel via the nerves (unlike prostrate cancer) and it is no big deal.  However, it is rare.  I will be happy when moffit paths re-read the slide and when Dr. Kiluk reccommends the same course of treatment.  However, I am expecting a completely (competing) different treatment plan as it seems that this is common.  Anyway, thanks for all your help and I really appreciate it.

    Perhaps I should seek another dr. at Moffit who can see her earlier.

  • tallydiver
    tallydiver Member Posts: 15
    edited June 2013

    Update:  There were problems with the MRI yesterday (Technical Difficulty) and she has to go back tomorrow morning for a repeat MRI Bi-Lat with contrast media to light up the nodes.  Getting all folders together and permissions for record release from Shands.  Images and slides...

    Here is a little video from Dr. Kiluk.  He seems like a competent sounding doc.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited June 2013

    tallydiver, I wouldn't worry about the time it is taking to do all these things--it is typical.  And cancer does not progress that quickly.

  • tallydiver
    tallydiver Member Posts: 15
    edited June 2013

    Hi Renee,

    Thanks for the reassurance.  I know it takes time, but I know that if the sentinel node biopsy shows microscopic invasion, then the intrabeam and lumpectomy option is off the table.  Still, the stumbles at Shands makes me feel more confident that the second opinion at Moffit, is a good idea.  I just hope the repeat MRI produces good results and that it has not spread into the nodes.  I hope you are doing well.  Her T1N0Mx rating that was provided by Spiguel, hopefully, holds up.

  • Adavisart
    Adavisart Member Posts: 26
    edited June 2013

    SGC728 I have the power port and I use Emla cream to numb the skin over it an hour before it is used and I do not feel a thing. The surgery to have it put in was a breeze. Was just a little sore for a few days after but it was no big deal.

    It will be yur best friend and protect you from wearing out your arm veins and also avoid the risk of chemo causing damage to your arm and having to have your flesh cleaned out and debrided (scary!).



    I get some mild bone pain from Neulasta and Claritin helps me but does not totally make it go away. i am actually going to get my last one in an hour! Had my last chemo yesterday and now I start six rounds of Herceptin only. So excited!!

    Expander exchange will be at the end of July!

  • TMM60
    TMM60 Member Posts: 121
    edited June 2013

    Adavisart- congratulations on finishing chemo- way to go!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited June 2013

    Yippee Adavisart ! Chemo done:). Way to go warrior! And exchange coming Ooo whoo!



    Cuetang - yeah, a much deserved break and fun and real bad food ha!



    Starynights - we've missed you! Are you out of chemo land now and rads? Good to see your avatar smiling at us:)



    Renee - your exchange is soon:) hope you've recovered from the Zometa shot:( and tami is letting you get some cool zzz ...



    Tallydiver - mom is in good hands! Wait is giving her the best team and solid data to determine course of action. There are always hiccups use them to your advantage.



    TMM60 and Paula and Susan - pressing on! Words of comfort....thanks.



    Lana - yeah for staying focus on today! One step at a time. Perhaps your MO may place you on cancellation list and move up appt. Best wishes on your work travel that is a new challenge. You've got it warrior!



    Can you all believe it's almost the middle of June! My gosh what a ride this year...hang on warriors...wish this was it...but thanks for riding with me:)

    (((Hugs)))

    Cindy



  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited June 2013

    Congrats on your progress Adavisart!  Great milestone achieved!

    tallydiver--be aware that an MRI is a screening tool.  It cannot tell confirm cancer.  It can point to spots that look suspicious, which would then need to be biopsied.  And, MRIs have a lot of false-positives.

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited June 2013

    tallydiver~~I just had an MRI last week that showed probable metastasis to the arm & spine. So they did a pet scan and had a bone surgeon check the scan. He found NO ABNORMALITIES!!! So Renee is right. There are false positives.



    Blessings

    Paula

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
    edited June 2013

    My lumpectomy and SND is Monday. I'm excited to get the thing out of me. I'm worried about the SNB and lymphedema, but still.  I can't wait to evict this tumor!!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited June 2013

    Hey GlobalGirlyGirl! Monday will be here before you know it. Fingers&toes crossed for your SND ...I had 7 nodes and wear a compression sleeve at the gym and trying to use good judgement with my trainers help in getting back into a new routine.

    You will be fine and so happy when you cross over:)))

    Just follow the materials your BS gives on LE and watch the arm. Elevate it during the day.

    Until Monday get out there and gather up all smiles and giggles you can girlie girl!

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
    edited June 2013

    Thanks for the encouragement and the tips, RMlulu!! I'm excited. Laughing

  • tallydiver
    tallydiver Member Posts: 15
    edited June 2013

    Hey Paula & Renee,

    Thanks for your responses.  I kinda half way expect them to call today and want to do another biopsy.  Shands is only two hours away from Tallahassee, so it is not too bad of a trip.  I would rather opt for increased sensitivity than missing a potential hotspot.  Hopefully it has not traveled, yet.

  • tallydiver
    tallydiver Member Posts: 15
    edited June 2013

    Just In.  Bi-Rad (MRI) is negative (I will post specifics later)  However, the surgeon called and mentioned that all was well and as expected.  There was mention of BRCA testing and I know that my mother does not meet the criteria, but the doctor mentioned that she would try to get BCBS to pay for it.  Any thoughts on BRCA testing?  It still looks like the lumpectomy, intrabeam option is still.  However, if she is BRCA positive, then masectomy is the route the physician would like to take.  I wonder why the BRCA folks are trying so hard to sell their test.

  • Cuetang
    Cuetang Member Posts: 173
    edited June 2013

    I had the BRCA testing, but I fell into the age criteria (under 40).  It was a simple test for me -- I had a bottle of travel sized scope, swished for 20 seconds and spit it into a tube (twice).  I had already chosen to do a double mastectomy, so having the BRCA test was more for me to know if I had a greater chance of developing other cancers, such as ovarian cancer if I was BRCA positive (which I turned out not to be).   

    Sounds like you're getting more pieces of the puzzle.  I had about 2 months between diagnosis and surgery, and it drove me nuts (I swore it was spreading like mad).  Turns out that it was the exact same size as all the pre-surgical and diagnosis tests had said they were. You and your mom hang in there-- things will work out! 

  • MotherT
    MotherT Member Posts: 3
    edited June 2013

    Well, i am now on the road to treatment...surgery was moved up to 6/13. I had the radioactive seed placement on 6/12, and then the radioactive tracer injections before surgery on 6/13. Seed placement was the most uncomfortable because they did not numb me beforehand. I was extremely apprehensive about the tracer injections, having read so many say that they were excruciatingly painful, but they put Elma cream on about 45 minutes prior, and it was just a slight sting for about five seconds following each of the four injections.



    Surgery was to include a lumpectomy and ALND...unfortunately, the surgeon said there was so much reactivity that she ended up taking all the lymph nodes. The breast incision isn't bad, but the ALND site hurts like crazy! I have one drain in, but that will hopefully come out today when we see the surgeon. She said she would have the pathology back, so we will begin to plot the course for treatment today. I'm a little apprehensive to hear what she has to say, but at least we are moving forward!



    I can't say enough about this wonderful, supportive group! You have helped me get through to this point, and I am grateful beyond words!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited June 2013

    (((MotherT))) - We are in your pocket brave warrior!

    yes, there is something about crossing over, having a path report in hand, and a BC Team with a kick c to the curb plan of atttack!  Fingers&Toes crossed...Sending calm healing thoughts for a speedy recovery:)  and on to treatment.

  • tallydiver
    tallydiver Member Posts: 15
    edited June 2013

    Hi Cuetang,

    I am glad you were negative.  She sent back the swish cup test and the surgeon mentioned she may try and find a way for them to pay for it.  Her main concern is that the girls don’t have to worry about it.  Either way, I am sure my dad will pay it if it makes her feel better.  BCBS will probably not cover it.  My grandmother was first diagnosed at 45 then died at 55.  Her mother died during childbirth and had no siblings.  However, she does not meet the criteria and I had read that triple negative receptiveness to hormones is more likely the BRCA mutation expression.  Is there something I am missing?

    I am glad you mentioned the wait.  We are seeing Dr. Kiluk at Moffit, Thursday.  We shall see what this “second set of eyes”, reveals.  I expect some differentiation between treatment plans and hope to start thinking about scheduling surgery by the end of the week.  We are just hoping to keep it out of the nodes.  That microscopic invasion and its effect on treatment options is what keeps bothering me. 

    Thanks for the words of encouragement.  I hope all is well with you and your family.

  • MotherT
    MotherT Member Posts: 3
    edited June 2013

    Not much went as planned today. I did see the surgeon, and she decided to leave the drain in two more days. I go back on Thursday to have it removed and meet with the oncologist. My BS ended up removing 11 lymph nodes, and 6 were positive. Also, the primary tumor was a little bigger than anticipated...1.6 cm. She did not get completely clear margins...there was some interductal spread (?), so she will have to go back in and clean that up, but she wants me to heal a bit first. I know I will need about six months of chemo, probably every three weeks, so I'm going to get a port...yippee! After that, radiation is a definite, probably every day for some length of time.



    All in all...not what we were hoping to hear. I am stage 3a, and will have a CATscan on Friday to see if anything else shows. My hubby is a wreck. I told him to work through it cause I need him to be positive!



    All I know is my BS, bless her heart, told us to go on our 25th anniversary trip to Disney as planned...things could get rolling after we get back. I think she knows I need that piece of "normal" before things get turned upside down.



    Ladies, please keep the positive thoughts and prayers coming if you are so inclined. I'm just putting one foot in front of the other right now

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