RECURRENCE

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purple32
purple32 Member Posts: 3,188

Hi Folks

Its been a long time , but here I am ! Just DX again today.


Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2020

    Crap, I'm sorry.

    Any idea if it's a recurrence, a return of the same cancer in the same location, or a new primary, a new cancer that has developed either in the same or contralateral breast?

  • purple32
    purple32 Member Posts: 3,188
    edited January 2020

    Beesie it's in the same breast and it's IDC but that's all I know right now. The pathology report comes out Thursday or Friday to tell me if it's hormone-driven and so on. How would I know for sure if it's a recurrence or new primary anyhow? I'm presuming it's a recurrence. I did not have radiation

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2020

    If the cancer is in the same breast, the first question would be if it's in the same area. If it's in pretty much the same location, then it is more likely to be a recurrence whereas if it's in a different part of the breast, I'd think it's more likely to be a new primary.

    The hormone status and grade is another indicator. Hormone status can change but you had a grade 1 ER+/PR+/HER2- cancer last time so if it's something different than this time, then it might be a new primary.

    Combining the two, same hormone status and same location, then it will certainly be assumed to be a recurrence. Different hormone status, different location, then it's most likely a new primary.

  • 7of9
    7of9 Member Posts: 833
    edited January 2020

    This is not meant to sound stupid or uncarrying but I'm hoping we get to say congratulations by not having radiation the 1st time it should wipe it out a second time. I was diagnosed shortly after you were and I had a recurrence 3 years later. Sucker was in 10 out of 14 nodes. I'm coming up on 4 years after radiation did its job this time and I had a full hysterectomy to to get all the hormone crap out of me. Did another lovely round of chemo... sucked ...but here I am broke from my last Disney trip and working away at getting my son to go from Cub Scouts to boy scouts. Life is still good here on the other side let us throw you a rope and come over across the Valley one more time let's keep going.... hugs

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    Oh crap Purple. Glad to see you but not for this reason. Fingers crossed for reports - and waiting anxiously with you.

  • purple32
    purple32 Member Posts: 3,188
    edited January 2020

    Gotcha Beesie - thank you.

    Path report will tell THU of FRI.

    First and 2nd LEFT breast. First time chest wall , this time more in the middle I think ...only 5 mm.

    7of9 I'm not altogether sure what you are saying about the rads but if I had issues the first time who's to say I can get it this time ? Treatment is not always ' as "easy' (* for lack of a better word!) for some of us.

    For example, I would LOVE to take arimidex but I opted out not because I was stupid but because I had an advanced case of osteopenia and I was between a rock and hard place. SINCE that 1st DX I have developed full blown osteoporosis and broken a total of 6 different breaks inc. my knee, elbow, shoulder, humurus etc ,,,,, That wasn't much fun either- Last breaks were 2 broken ankles as well as my dominant arm at the same time while I was the primary caregiver for my husband who was dying - of cancer.

    In any case, I wont be going to Disney as I have trouble walking and also some other health problems,.....

    Yeah, I hope I can get good treatment and come out the other side as you have and I wish you all the best- I'll take a rope that anyone is wiling to toss me. Its just that some of us have underlying poor health or OTHER factors that make it more difficult to catch!

    Minus Two...good to see you again!

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    Sorry you are dealing with this again. It is always hard, but the second time around is an extra hard punch in the gut. Since you have underlying health problems, hopefully your providers are taking a team approach for how to best treat this while minimizing impact in other areas. As you think of questions relating to the other health issues, be sure to write them down to be sure they are addressed. Hoping you have a plan in place soon.

  • purple32
    purple32 Member Posts: 3,188
    edited January 2020

    KBeee

    RE: "the second time around is an extra hard punch in the gut. "You said a mouthful!
    Thanks for your support.

    Laurie

  • purple32
    purple32 Member Posts: 3,188
    edited January 2020

    So I just got my path report ...looks like a recurrence to me.. ER PR + HER2 NEG. MGH Boston THIS TUES at 1130 to meet with my surgeon DR MICHELE GADD

  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    Wishing you the best at your appointment, Purple32. Hugs and love to you!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    Purple - in your pocket for the meeting with the surgeon. Is this the same doc you used before?

    Unreal to hear about the number of fractures you've had. I'm "enjoying" good luck with Prolia shots every 6 months (only one broken arm). The chemo caused osteoperosis has improved back to a manageable osteopenia - and my DEXA numbers keep getting better. I'm about to have my 8th shot and both MO & Gyn think I should continue for 2 more years & re-valuate. Of course I require the shots to be in my hip or butt because of LE.

  • purple32
    purple32 Member Posts: 3,188
    edited January 2020

    TY MINUSTWO!

    Same dr as before. VERY competent.
    Yes despite the recurrence I do not / cannot have regrets on not taking the Als . In my case, I had osteopenia and had broken a knee and shoulder by then.

    Now full blown osteoporosis and 6 bones broken.The Als would have taken me down and I was on actonel etc ... did not help me at all.

    I am afraid of the prolia as my bones are so thin I think I might get the jaw necrosis ( jawbone is very thin) or even spontaneous femur fx. ( what do do , what to do!) So glad you have had good luck with it.

    MNSusan----thanks to you as well!
    Laurie

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    I posted this on MNSusan's thread, but meant it for you. I am a bubblehead sometimes. You hay want to ask your doc about this test to see if they think you would be a candidate for it.: https://oneome.com/

    It tests your pharmacogenetics. Basically it looks at different cell receptors nad such and explaisn why some people react poorly to some medications while others have no side effects. It might help the team choose drugs that would be helpful for you with the least side effects. You can read about it and if it seems like something you think would be helpful, you can ask about it. I've only read about it (though I would love to have it done for curiosity sake...but I cannot justify spending $$ to satisfy my curiosity).

  • purple32
    purple32 Member Posts: 3,188
    edited February 2020

    THX for your reply!

  • Nana2-8
    Nana2-8 Member Posts: 66
    edited March 2020

    purple32 - I'm just now finding your thread. I am so sorry to hear you have been kicked in the gut again! Truly, I know the feeling. It's been 5 years since I last joined this club and here I am again! Mine is a new kind in the opposite breast. ~ Have you had an update? What is your latest plan? We can hold each others hand thru this process.

  • purple32
    purple32 Member Posts: 3,188
    edited March 2020

    Nana2-8

    Im very sorry to hear !

    It sure does shock us even though I was always waiting for the other show to drop- at each mammo.I was almost 8 yrs out after virtually no tx but the LX!


    JUST got final path afyer Jan 25th 2020 LX - ER PER POS HER2 NEG only 4 MM, clear margins one node out..,. clean Stage 1 Grade 1 ! YAY, but wait

    Im in the same place I was in before... cant take the ALS and rads is not going to react well with my bad lungs -.... LEFT breast.

    I would jump on the tamoxifen but I am a high risk for blood clot.

    UGH

    VERY grateful and feeling blessed right now, but what's agirl to do ? I go in and meet with my team WED March 11th,



  • Nana2-8
    Nana2-8 Member Posts: 66
    edited March 2020

    UGH! is right! The same place!!! UGH! ~ I'll be thinking of you on March 11th. That's the day my company leaves, so I'll be changing beds and doing laundry....lots of idle time......so I'll be sending good thoughts your way. Keep us posted, ok?

  • purple32
    purple32 Member Posts: 3,188
    edited March 2020

    I will Nanah 2-8 STILL not sure if they are considering this new or recurrence! Did you do rads last time ?PLEASE PM Me !
    Laurie

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2020

    you might want to ask about proton rads which is very precise and does not pass beyond its target spot.

  • Reader425
    Reader425 Member Posts: 653
    edited March 2020

    Purple I'm sorry about this. We're with you here. I had radiation to the left side in the prone position. It minimizes damaging scatter to the heart and lung. You may wish to ask about this possibility. Not all facilities do it.

    All the best and keep us posted ❤

  • purple32
    purple32 Member Posts: 3,188
    edited March 2020

    THX Reader245 They do that here .

    I plan to ask about the PROTON in Boston ( late husband had it ) Though I dont THINK it is avail for BC! BUT I will ask!

    ALSO, has anyone heard of the new ***CYBERKNIFE*** tx avail for many cancers - lung pancreatic spine brain etc ..TOTALLY non invasive like magic wand with a very high success rate ( NOT for BC :<>0( Avail near me at ST FRANCIS hospital in Hartford CT.

    HTH someone.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2020

    Purple - yes the Proton is available for breasts in some places. Not sure where. My brother had it for prostate cancer in Loma Linda, CA. Sorry don't know about cyberknife.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2020

    I had proton rads for breast. (Left sided TNBC).

    There can be an issue getting coverage. The center I went to (Procure in NJ) worked with me to limit the $ I had to pay to my out of pocket max which I knew I would meet regardless. They fought the fight with insurance and I don't even know what they finally got from them. They were wonderful.



  • purple32
    purple32 Member Posts: 3,188
    edited March 2020

    santabarbarian

    Can you tell me what effects you had form proton? My husband had ZERO ...but his was colon cancer... Feel free to PM if prefereed.

    Thank you.

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