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Topic: RECURRENCE

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Jan 21, 2020 06:24PM

purple32 wrote:

Hi Folks

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


LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Jan 21, 2020 06:30PM Beesie wrote:

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?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 21, 2020 08:40PM - edited Jan 22, 2020 06:00AM by purple32

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

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Jan 21, 2020 10:14PM Beesie wrote:

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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 21, 2020 10:59PM 7of9 wrote:

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

If you're going through hell, keep on going. You might get out before the devil even knows you're there. Dx 1/18/2012, IDC, Left, 2cm, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/31/2012 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/31/2012 Reconstruction (left); Reconstruction (right) Dx 12/23/2015, IDC, Left, 2cm, Grade 2, 10/14 nodes, ER+/PR+, HER2- Surgery 1/18/2016 Lymph node removal: Left, Underarm/Axillary Surgery 1/18/2016 Prophylactic ovary removal Radiation Therapy 2/10/2016 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy 3/31/2016 Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
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Jan 22, 2020 12:13AM MinusTwo wrote:

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

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 22, 2020 05:56AM - edited Jan 22, 2020 06:01AM by purple32

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!

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Jan 22, 2020 11:21AM KBeee wrote:

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.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jan 22, 2020 12:24PM purple32 wrote:

KBeee

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

Laurie

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Jan 24, 2020 12:54PM purple32 wrote:

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

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Jan 24, 2020 01:47PM MNSusan wrote:

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

Allergan Natrelle Style 45-700 ccs Dx 10/2005, DCIS, <1cm, Stage 0, Grade 2 Surgery 12/1/2005 Lumpectomy: Left Hormonal Therapy 12/31/2005 Dx 10/2012, DCIS, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/6/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 11/7/2012, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 5/15/2013 Reconstruction (left); Reconstruction (right) Dx 1/2020, Stage IV, metastasized to lungs, ER-/PR-, HER2+ (IHC) Chemotherapy Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Jan 24, 2020 01:59PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 24, 2020 04:53PM - edited Jan 24, 2020 04:54PM by purple32

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

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Jan 24, 2020 08:26PM KBeee wrote:

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).

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Feb 13, 2020 06:31AM purple32 wrote:

THX for your reply!

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Mar 5, 2020 09:19PM Nana2-8 wrote:

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.

Dx 9/23/2015, DCIS/IDC, Left, 1cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 10/14/2015 Lymph node removal: Left, Sentinel Dx 2/21/2020, ILC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Mar 6, 2020 06:56AM purple32 wrote:

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,



LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Mar 6, 2020 09:17AM Nana2-8 wrote:

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?

Dx 9/23/2015, DCIS/IDC, Left, 1cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 10/14/2015 Lymph node removal: Left, Sentinel Dx 2/21/2020, ILC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Mar 6, 2020 12:35PM purple32 wrote:

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

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Mar 6, 2020 08:18PM santabarbarian wrote:

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

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Mar 7, 2020 01:22AM Reader425 wrote:

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 ❤

Dx 9/11/2014, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 10/29/2014 Lumpectomy: Left Radiation Therapy 1/3/2015 Whole-breast: Breast Hormonal Therapy 2/28/2015 Arimidex (anastrozole)
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Mar 7, 2020 03:04PM purple32 wrote:

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.

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left
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Mar 7, 2020 03:42PM - edited Mar 7, 2020 03:43PM by MinusTwo

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Mar 7, 2020 04:23PM santabarbarian wrote:

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.



pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Mar 8, 2020 09:04AM purple32 wrote:

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.

LE on left from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 5/1/2012 Lumpectomy: Left

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