Lumpectomy in 6 days-new to here

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thrifty1
thrifty1 Member Posts: 67

I'm surprised to find myself on here.  I'm not one to usually talk openly about this.  But I find myself really scared and clueless.  I'm 43, just been dx with IDC, Grade 3, receptors are positive and HER2 is negative.  What I'm most concerned about is being a Grade 3.  When I search online, I keep coming across articles saying the "prognosis for Grade 3 isn't very good".  Anyone out there that is dx with Grade 3 and similiar results please share your story, symptoms, treatments and encouragement with me.  I'm scheduled for Oct 28th for lumpectomy then radiation therapy depending on the lymph node results.

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  • ladyboss1997
    ladyboss1997 Member Posts: 202
    edited October 2014

    I was diagnosed with IDC, stage 1, grade 3, and same hormone receptors in June 2011. I had a lumpectomy, chemo, and radiation. Lymph nodes were clear. My MO recommended chemo due to the grade 3. My onco test put me right in the middle for risk of reoccurrence. I have been clear on all scans since (3 years/4 months). I am glad I did the chemo. Six months of treatment was worth the peace of mind that I did everything I could. I have read that chemo works well on grade 3 tumors.    

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited October 2014

    sheeba, sorry you found yourself here. I was DX'd with Grade 3 on biopsy and down-graded to Grade 2 after LX and LND. But, I also had an intermediate onco score of 21, so opted for chemo. I am one year past my LX. My tumor was close to my chest wall, but I did get clear margins and had radiation also. All in all, I have no regrets regarding my treatment decisions. I have also read that a higher grade usually responds well to chemo.  The Grade is not the only determining factor in your prognosis; try not to read too much into it. Once you have surgery, maybe more scans, etc., your MO will be able to give you the whole picture and plan your treatment accordingly. Will you be getting the BRCA genetic testing done? Wishing you the best! 

  • SailingWind
    SailingWind Member Posts: 110
    edited October 2014

    Receptors positive and Her2 neg. is good. That means you will respond well to anti estrogen pill that has fed your cancer. Go on this site and read more about it. Stick to research sites. Ask more questions of you dr. Ask for hard copies of all your report. Then you can refer back to them. It is too much to take all in. This site is a good place for support.

  • thrifty1
    thrifty1 Member Posts: 67
    edited October 2014

    Thank you everyone for your encouraging words.  My tumor is also close to my chest wall.  That was another thing I heard was "don't do radiation therapy" because in a few years you will need to have a heart valve replacement because of it's close location and it's on the left. Ugh.  My nurse navigator reassured me they have up to date technology now days, etc.  I guess I will know more Tuesday after surgery and if lymph nodes are involved.  Praying they are not.  I have strong faith so I am leaning on that.  Thank you for reminding me to get hard copies of my reports, I made a note to myself. :)  Did it take long to get your onco type score back?  Waiting seems to be the hardest part of it all.  They told me I may not need the BRCA testing since mine isn't genetic anyways and insurance may not pay for it?  Not sure what to do about that.  I do have 2 teenage daughters :(

  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Sheeba - I was diagnosed with IDC on 7/11.  My tumor was stage 1 grade 3 with negative nodes.  I had a BMS on 8/27 with immediate implants.  My oncotype came back in the intermediate range with a score or 23.  I started 8 rounds of CMF chemotherapy last Friday. 

    My chance of overall recurrence with Tamoxifen and chemo is 10%.  I'll take those odds! 

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited October 2014

    How would a doctor know that a breast cancer isn't genetic, without testing for the genes?  I don't get that at all. 

  • thrifty1
    thrifty1 Member Posts: 67
    edited October 2014

    ml143333  why did you opt for a BMS and not lumpectomy.  I hope I made the right choice in doing just a lumpectomy vs mastectomy.  The surgeon told me since my tumor was small .8 cm that I would be ok just with lumpectomy.  Regarding the gene testing she said since no one in my mothers side has a history of it there was probably no need to do it, said insurance may not pay and pretty much waist of $$?   I feel like I'm cluessless to all this and need to continue to do my research on here.  My husband wants me off the internet because he says the more I research the more down I feel.  I think that was because of all the article about being Grade 3 and the "poor prognosis" stuff.  But actually hearing from others with cases like mine lifted my spirits knowing the positives :)  thank you all again.

  • SailingWind
    SailingWind Member Posts: 110
    edited October 2014

    Sheba, If  the Dr.gave  you a choice which way to go, survival rates are the same. Are you going to do the onco score that tells you whether you are a candidate for chemo or not? That is a question you should ask.

    If reading gets you down than limit it. Watch where you go for information. Your breast surgeon is there for you. Don't have to wait for surgery to make another appointment and ask questions,. 

  • thrifty1
    thrifty1 Member Posts: 67
    edited October 2014

    Yes definitely going to ask to do onco score.  And yes I have to be careful where to research.  Think I will stay pretty much here ;-)

  • Holeinone
    Holeinone Member Posts: 2,478
    edited October 2014

    Sheeba102, it is all so overwhelming in the beginning. I had a lumpectomy, was fairly easy. I had to have a drain for 10 days, that part was annoying. I have had friends that did not need a drain, everyone is different. 

    Until they get in there & remove the tumor & nodes, you do not need to research much, because you just have a piece of the information and sometimes it can change. 

    Chemo is a nightmare, hopefully you will not need it. Keep posting here, we all "get it". 

  • thrifty1
    thrifty1 Member Posts: 67
    edited October 2014

    Hi :) well had my lumpectomy and SN biopsy yesterday.  Didn't think it was too bad. Even all the prep work with wire localization and lymph node mapping. Now just waiting for Dr appointment on Monday with final results. Another waiting game :-(  

  • home4lreb
    home4lreb Member Posts: 11
    edited October 2014

    I had my lumpectomy and SN biopsy on Oct. 3rd.  I got the path results on the 13th.  After the path reports came back (not clear margins and clear lymph nodes) they decided to send it off for onco testing.  That test can take two weeks to get back.  I am not trying to dicourage you as courage is the one thing we all need to have, but I just wanted to let you know how long it took me to get results back.  It seemed like forever.  The doctor got my onco results back last Friday (24th) and I got the results on the 27th.  Chemo starts on Nov. 6th due to onco results (27).  I am also a grade 3.  My tumor was also very close to my chest wall and they have to go back and take more tissue.  Your husband is correct about staying off the internet :)  I spent alot of time researching everything I could about BC from the time I had my mammo (August 25th).  Everyday I absorbed myself with research.  I finally decided that I was just freaking myself out and this was the best forum that I found while searching.  For the two weeks that I waited for the onco results I viewed that time time as an "off" period from being a cancer patient.  I know it was all in my mind, but it helped me get through the waiting.  I am very glad that your surgery went well and I will be watching to see how your results come back.   

  • thrifty1
    thrifty1 Member Posts: 67
    edited November 2014

    Hi home4lreb, so sorry you have to do chemo.  That stinks.  I hope it goes good for you and not bad side effects as some people say on here.  I go see my oncologist for the 1st time on Nov 10th to talk about treatment.  My concern is also having to do chemo since my grade is 3.  I know for sure I will most likely have to do rad therapy my surgeon said.  My margins were clear and no lymph nodes were effected so I would think no chemo?  Maybe they won't even have to send off for onco score??  But who knows.  I too find myself being absorbed with research.  Its the "unknown" that keeps me coming back.  I am just amazed at how many women have bc on here.  Its so scary to me.  Makes me wonder what is out there in our world that causes all this junk!  Keep your head up girl!  We are all in this together!!

  • Nash54
    Nash54 Member Posts: 837
    edited November 2014

    Hi sheeba102.  I have the same diagnosis as you but am a bit older (59).  For some reason my Onc was not concerned about the grade 3.  Maybe because there was no sign that it had spread (no node involvement and clean margins).  My nurse navigator said it was no worse, just different.   My onoctype came back intermediate so I'm waiting on another test called mammaprint which gives a more  definitive yes/no to chemo.  Again, my Onc seems to think I won't need it, but as everyone has said treatment options can change.  I also, had internal radiation as opposed to external.  Treatment is so individualized based on many factors that no two diagnosis receive the same treatment.

    Good luck on your Nov. 10th follow-up.  I have one that same day. 

  • thrifty1
    thrifty1 Member Posts: 67
    edited November 2014

    Hi Nash54, yes it does look like we have the same dx as each other.  It's been about a week since my surgery.  Other than the lymph node pain I've had no complaints.  But just today I've noticed some burning type sensation in the area of my lumpectomy.  Did you experience any of that.  Seems to radiate up through my neck area.  Is that just the healing process??  I just had my surgery followup yesterday and he examed and said everything looked good.  Just today this weird sensation has got me concerned.  I'm sure I'm over reacting and its just normal healing lol.   So why did they choose to do internal radiation vs external on you?  I haven't had my 1st Onc appointment yet, it's this coming Monday.  I'm beginning to think he won't even know what treatment I will be looking at even then.  I have a feeling he may want to run that oncotype test and then wait some more.  I seem to be keep focusing on the Grade 3.  But I guess from what you said, if margins clear and no lymph node involvement it may not be a big concern??  who knows, yes I think treatment is very individualized so we never know.  The unknown is the killer for me.  Keep in touch Nash54, it will be nice talking with each other since we basically have the same dx.  Good luck with your Monday appt too :)

  • Nash54
    Nash54 Member Posts: 837
    edited November 2014

    sheeba102....I had weird pains for a couple of weeks after lumpectomy...mostly in my back shoulder area and arm.  But it eventually went away.  My burning sensation was more in my lymph node area .  Everything feels pretty normal now.  Some women are better candidates for the internal rads (like smaller breast, no node involvement, and small tumor).  However, a lot of hospitals either don't have the equipment (very expensive) or the surgeons don't have lot of experience with it.  My doc is a Breast Surgical Oncologist and the director of the Breast Center where I'm being treated.  I had the Savi device.  He said I was candidate for internal rads so I opted for that instead of the external.  I did twice a day for 5 days.  Device was uncomfortable but now that it's over I'm so glad I got it done in a week.  We discussed my treatment plan at our first appt. even before surgery was done.  

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