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Topic: Local Recurrence Chime In

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: Oct 20, 2017 06:21AM

Christmascarol wrote:

Hi Ladies,

I have been diagnosed with a local recurrence, after mastectomy. Looking around the site to try to connect with others who have had this happen to them, either after mastectomy or lumpectomy. I see there are some of us out there but we are scattered about the site. I thought I would try to start a current thread to try to get us together


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Posts 151 - 171 (171 total)

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Mar 1, 2019 04:47PM Astrid wrote:

seems you have a very caring support team right behind you here A. Come talk anytime...no doubt one of your global posse will be up. X


2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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Mar 3, 2019 02:37PM Ailurophile wrote:

love all the support! You are a wonderful group of ladies with tons of useful information. Thanks for having my back.I truly love you all and pray for all of us.

Treatments will start this Friday. I will be in her clinic the entire day. They want to monitor me closely.

Dx 7/2013, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/16/2013 Mastectomy: Left, Right Dx 1/2019, Stage IV, metastasized to liver/other, Grade 2, ER+, HER2- Surgery 2/4/2019 Prophylactic ovary removal
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Mar 3, 2019 06:17PM Astrid wrote:

will hold you in prayer on friday A.Hug

2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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Mar 27, 2019 06:10PM MsMungo wrote:

Hi all, chiming in! I'm up to recurrence #3, over an 18 year period, starting with 2mm of DCIS in 2001. All have been local including last 2 that have recurred in the mastectomy scar. Never had any reconstruction, so the recurrences were pretty easy to spot. Asked for the Oncotype test to try to help make a decision on chemo. Came back at 38. So have just started TC chemo last week. Was on Arimidex for 6 years until 2017. MO has said he will put me back on it - probably indefinitely. I'm fine with that. Hugs and love to the brave women here.

Started with DCIS in 2001 at the age of 37, invasive recurrences in 2004, and then in chest wall 2011 & 2018. Amazingly no mets. Oncotype score 38 for latest recurrence. Surgery, TC chemo & then back on Arimidex. Dx 2001, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 2004, ILC, Left, <1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- (IHC) Dx 9/2011, IDC, Left, <1cm, Stage IB, Grade 2, ER+/PR+, HER2- (IHC) Dx 11/2018, IDC, Left, 2cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR-, HER2- (IHC) Surgery 2/2/2019 Lumpectomy: Left Chemotherapy 3/19/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole) Surgery Lumpectomy: Left Surgery Mastectomy: Left Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Left
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Mar 28, 2019 05:44AM Astrid wrote:

so sorry to hear about this latest recurrence Ms Mungo. It is not easy going through repeated dx's no matter if distant spread or not.

It looks like this is your 1st chemo and you had whole breast radiation in an earlier recurrence. Is that right? I hope the chemo works brilliantly for you and goes smoothly.

Hug

Astrid.

2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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Mar 28, 2019 09:33AM KBeee wrote:

MsMungo, Sorry you are dealing with another recurrence. I hope this is your last! Hoping you tolerate the chemo well, and encourage you to join hte chemo board for your month. Mine was a sanity saver both times!!!

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Mar 28, 2019 02:52PM Christmascarol wrote:

MsMungo,

Big hug to you! So sorry you are dealing with this yet again. It is so difficult the first time around, yet some of us ladies have 2nd third and fourth rounds. Good to hear you had the oncotype test to know you need chemo, even though I wish you didn’t. I am sure we all hope this is the last time you ever have to deal with a recurrence and that the treatment goes well. You are brave, and thanks for sharing. It is good to know for us on this thread that local recurrence(s) can be successfully treated over many years, even decades, and we should keep on trooping and not ever give up hope. You, like others on this thread, are a model for us. Xoxo

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Mar 29, 2019 09:24AM Christmascarol wrote:

You can’t be brave if you’ve only had wonderful things happen to you. Mary Tyler Moore.


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May 14, 2019 01:39PM movingsoccermom wrote:

Hello Ladies,

Just discovered recurrence within my incision. As you all have noted its so much worse with the second diagnosis. Nodes are clear, PET scan tomorrow. Sure wish they would find some better treatments.

Dx 3/3/2015, IDC, Right, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 4/1/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 5/27/2015 Whole-breast: Breast, Lymph nodes
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May 14, 2019 02:02PM 2002chickadee wrote:

movingsoccermom, I'm so sorry you're joining this club! Fingers crossed for a clear PET. No matter what they find, you'll find a way to put one foot in front of another to tackle this new challenge. Sending hugs.

Dx 1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 3/23/2018 CMF Dx 9/2018, IDC, Right, <1cm, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy: Right Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 14, 2019 02:08PM pesky904 wrote:

movingsoccermom, best wishes for a clear PET. Mine is Monday. You're in my thoughts!

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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May 14, 2019 08:14PM - edited May 14, 2019 08:17PM by buttonsmachine

movingsoccermom - I'm sorry you're in this situation, but you've come to the right thread.

I don't want to overwhelm you at this point, but please insist on a breast and chest wall MRI before you undergo any surgery. My original Drs didn't do one after my local recurrence, and then they did a mastectomy but left cancer in there AGAIN! Long story short it made a mess, and I had to go through a lot to clean up that mistake.

I hope your PET scan results are good. Hang in there and please keep us posted. Gentle hugs.

Heart

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 9/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 4/30/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/27/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 4/30/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/10/2018 External: Lymph nodes, Chest wall Hormonal Therapy 7/1/2018 Zoladex (goserelin) Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 1/15/2019 Aromasin (exemestane)
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May 15, 2019 11:35AM - edited May 15, 2019 11:38AM by hodgepodge

Here I am on the merry-go-round of cancer again.

I was diagnosed the first time at 35 in 2005. I found a lump but mammo and ultrasound didn't see anything suspicious so had a needle biopsy. It was determined that it was DCIS. I had a lumpectomy with bad margins then a recision with clean margins followed by 7 weeks of radiation.

Recently I started having a lot of pain and thickness in my left breast. Again, mammo and ultrasound saw nothing, but with my history they agreed to an MRI. It found a suspicious spot (6mm) not on the left side I was worried about but just behind the scar from the previous lumpectomy deeper into the breast.I had an MRI guided biopsy and it came back as IDC. I decided to have a DMX and they removed a 4mm area with very wide margins and the left breast was clear. All good news!

My oncologist says, great! You're done. Tumor is too small to oncotype, the one lymph node checked is clear, tumor is tiny and only grade 2. We can consider Tamoxifen if you tolerate it well, but don't worry, your chance of recurrence is 1-3%. This all sounds too good to be true. I told him about pain I've been having in my pelvis and he agreed to do a bone scan (get the results today). Every ache I have makes me think I should have more tests to make sure this cancer that lurked for 13 years hasn't taken root somewhere else.

I'm thinking about getting a second opinion. I am very thankful for all the good news because I know that makes me one of the lucky ones and really hope this doesn't come across whiney.


Dx 12/7/2005, DCIS, Right, 1cm, Stage 0, ER+/PR+ Dx 4/1/2019, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Right; Prophylactic mastectomy: Left Surgery Lumpectomy: Right
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May 16, 2019 03:45PM movingsoccermom wrote:

Sooooo. PET scan not good. More biopsies--mediastinum nodes this time. Brain MRI, bone scan. Why this cant all be done at once frustrates me. Will keep you posted.

Dx 3/3/2015, IDC, Right, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 4/1/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 5/27/2015 Whole-breast: Breast, Lymph nodes
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May 17, 2019 05:52AM Salamandra wrote:

Hey hodgepodge and movingsoccermom,

I'm sorry you're having to deal with this. The drip-drab of information is like tailor made to push anxiety buttons, as if the situation weren't already difficult enough. Hoping for the best for you!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 19, 2019 02:44PM KBeee wrote:

Hodgepodge and moving soccermom, I am sorry you are dealing with recurrences.

Movingsoccermom, when are the tests scheduled? Sorry you have to have so many, and not at the same time. Scans and waiting are so very hard.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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May 20, 2019 03:57PM movingsoccermom wrote:

Thank you KBeee. Had the brain scan yesterday. Wowzers, did I feel rattled. This morning did the EBUS procedure; tube down your trachea with an ultrasound tip and from there guide a needle into the nodes located in the center of the chest. No results for quite a few days. Ugh. Will keep you all posted.

Dx 3/3/2015, IDC, Right, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 4/1/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 5/27/2015 Whole-breast: Breast, Lymph nodes
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May 20, 2019 11:21PM purplestargazer wrote:

Movingsoccermom - the pace of testing feels practically intolerable. I'm sorry for all of the attendant anxiety. Thinking of you.

Dx 6/12/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 7/9/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Xeloda (capecitabine) Dx 3/12/2019, IDC, Left, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2- Surgery 4/9/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 4/30/2019 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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May 21, 2019 08:42AM Astrid wrote:

good luck with the tests msm. Really sorry to read the results of Pet were not great.

Thinking of you.

2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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May 22, 2019 01:48PM JanetMara wrote:

hello ladies,

I just found this thread and like most of us,there's always something anywhere,and it's harder this time.

Good luck everybody with their procedures,tests and treatments,I hope it will be better than the 1st time.

I had a L mastectomy 2017 and after mastectomy,biopsy results came back stage 1. 2018,there is a growing lump on my L supraclavicular area,again I had to have CHEMO,sad to say I have severe side effects,MO stopped the chemo and recommended for radiation,after I saw RAD ONCO,he recommended chemo before radiation for 2 weeks,but my platelets and rbcs started to go down as low as 23,000 and I was bleeding in my gums,my MO did not recommend for a platelet and blood transfusion,here I am now suffering with the complications of low platelets as joint pains,muscle pains,weakness,sleepless at times,weak immune system,sinus infection,dizziness,am monitoring myself for any bleeding and go to ER and MO just recommended blood tests every week and bone marrow aspiration and biopsy (am waiting for their to call if authorization is approved),how sad that this MO is not so concerned that I might bleed anytime,so I made appointment with his PA who has more experience and more knowledgeable than him.

Janet

Dx 5/22/2016, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (IHC) Chemotherapy 11/27/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Dx 7/2018, DCIS/IDC/IBC, Left, 6cm+, Stage IV, metastasized to other, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 11/8/2018 Perjeta (pertuzumab) Chemotherapy 1/25/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/9/2019 Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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May 23, 2019 07:05AM KBeee wrote:

Janet, that sounds horrible! Hoping your platelets come back up quickly.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

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