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Topic: TNBC Regional Axillary Recurrence - advice/experiences/input?

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: Jul 4, 2019 10:17AM

TNBC_77 wrote:

Hello all,

Just been diagnosed with a regional recurrence in ipsilateral axillary nodes after lumpectomy, mastectomy, chemo. Found it myself due to pain. 2 cm lump in armpit.

The good news is a CT scan showed no additional spread in visceral organs. Did you also get a PET/Bone scan and/or brain scan?

I consider myself lucky to not (hopefully) have spread further and from my understanding it is still curable if still a little negative in prognostic value and outlook. Quite unusual for it to be 'just' regional - is that true?

Would love to connect with anyone with regional recurrence, what chemo (if any) did you get, did you have a lot of issues with lymphedema after removing all lymph nodes in axilla?

I have surgery next week for axillary clearance.

Thanks

BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Jul 5, 2019 01:06PM KBeee wrote:

I had a local and regional recurrence of ER+ breast cancer. I had chemo again, and also had ALND. I had a PET scan, which was clear. I've had 2 bouts of lymphedema, which both lasted about a month. PT helped, and I do go every 3 weeks to specially trained PT. I think that has really helped with range of motion and keeping lymphedema away.


Sorry you are dealing with this. Hoping you recover from surgery quickly, and that you do not develop lymphedema.

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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Jul 5, 2019 02:16PM TNBC_77 wrote:

Hi KBeee,

Thank you so much for your reply.

I definitely have given lymphedema some thought and your suggestion to keep up the PT is one I'll make sure to follow. Do you wear a compression sleeve as well? Can I ask what happened - did the arm swell up? Did your surgeon set you ut with a PT straight away?

I am so pleased to connect with you, and glad you are doing well. Is that a runners medal I spy? There is a race in my home town that happens during a festival every year and I had decided to run it in 2020 and I intend to keep that plan. I am not at all a runner - any helpful tips here?

Thanks again for the reply - wishing you a great weekend!

BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Jul 6, 2019 06:45AM KBeee wrote:

I do have a lymphedema sleeve. I wear it when I run and it's hot, which is when it swells the most. I also wear it if I am doing a lot of yard work. I should probably wear it more than I do.

I do like to run, though I use the word run loosely. If it is faster than a walk, I call it a run, so it's pretty slow!!!!! The picture that's my profile picture was taken at the Rock n Roll half marathon in Vegas. I met some of my October 2013 chemo gals out there in 2014 and 2015 and ran it. I walked and/or ran every day through chemo, including a local half marathon. I trained to walk/run it. I ran 2 miles then walked a mile, ran a mile, walked a mile, ran a mile. I was able to do that through the whole thing, though if I had to walk the whole thing, I would have been fine with that too. I had a couple friends that did it with me, and also were the ones I walked or ran with most days. My daily walks were my sanity savers. They helped me as much mentally as physically during treatment.

The times when I developed lymphedema it was either in the hand only or the hand and lower arm. I saw a lymphemeda therapist and dutifully wrapped it in bandages all day every day for a few weeks until it eased, and then I wore my sleeve daily for another month or 2. Since starting with the PT (I go every 3 weeks) it has not returned. The PT also helps with scar tissue. My first time, I had BMX and reconstruction. The second time they did radiation, and the reconstructed breast was literally rock hard as a result. The PT has helped with the scar tissue.

Feel free to ask any questions!

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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Jul 8, 2019 11:30AM TNBC_77 wrote:

Hi KBeee,

Thanks for that note. Last time I did chemo going for walks was so helpful - having a dog is a great thing. Cuddles and walks all day long :). I'll try to keep up the running training as well.

I have wondered how radiation will affect future reconstruction results. I was supposed to have reconstruction soon but this recurrence will push that back now of course. Again, not the main issue but I was so looking forward to it.

I've made a note in my phone (that list I write myself to remember to ask the docs and never do hahaha) about a PT and how that is handles forward.

Thanks again!


BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Jul 27, 2019 12:06PM - edited Jul 27, 2019 12:08PM by Tumbleweed13

hi it sounds like we are in the same boat at the same time so I want to offer you what support I can as the main thing I'm struggling with now is not knowing anyone who's weathered and beaten TNBC recurrence — whereas the first time I had 3 women in my corner who coached me through all the steps it took to beat it and it seemed my experience was exactly like theirs. I just discovered a 1cm lump in axillary breast tissue that turned out to be TNBC local recurrence. Had surgery 7/19 and they have determined that they got clean margins and it seems to still not be in the nodes. They are saying that I will start Taxotere/cytoxan with cold cap in August followed by 6.5 weeks radiation, which they spared me the last time. One thing my surgeon told me that has relevance to your situation is that in her experience, when TNBC comes back it shows up in the nodes and when she takes them it goes away for good! My situation seems maybe like the cancer survived all the chemo they gave me the first time (neoadjuant cisplatin and post mastectomy AC) and took up residence in some scar tissue. I can't seem to get the doctors to tell me anything unambiguously positive but like you, I have the sense that this is a leftover and curable if I can just endure going through this tunnel once again. Sending you all the hope and strength and I will look forward to hearing about you crushingly it each step of treatment. I'll be going through the same stuff at the same time

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Jul 28, 2019 10:43AM santabarbarian wrote:

For those with recurrences of TNBC: can you share your stage, nodes, & treatment course of your initial TNBC?

For tumbleweed & TNBC 77 - look at external hyperthermia. I had a 3 cm node in my first treatment.

Cancer cells die after an hour at ~108 degrees, while healthy cells are fine even a few degrees higher. Vets use external heat to shrink inoperable animal tumors. So I figured it was low tech low risk and doable-- especially with a very palpable tumor and node. I love hot tubs (105 = heaven) so I had a sense that "ouch" heat is what I needed and I did that as hot as I could stand with breaks.I believe this really helped me on round one.

I put a very hot hot-water bottle on my armpit and tumor several times a week for 1-2 hours each time, during chemo. To the point of mild burns and a pink discoloration that took a few months to fade. I also put a heating pad on tumor & axilla during chemo to draw blood to area. Heat causes tumor to release heat shock protein and this can make immune system response better by making cancer less able to hide.

I spoke to the head of hyperthermia at UMD after doing all this -- I told him what I had done and he said he is certain that I did myself a large favor. I mention it in case you want to look it up, since it is easy.

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 2/10/2019 Whole-breast: Breast, Lymph nodes
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Jul 29, 2019 11:24AM TNBC_77 wrote:

Hi Tumbleweed13!

So great to connect with you - we will for sure be buddies through this and be the next two to beat a TNBC recurrence! How are you feeling after surgery? Healing ok?

I am sure there are lots and lots of people who have beaten this but they are out living their lives, not reading through the forums here and perhaps ripping up old wounds

I am not sure what chemo I will have yet but they have mentioned a likelihood of Carboplatin which has been proven effective for TNBC, especially BRCA1 I believe. Did you get genetic testing? I didn't have any radiation last time as my sentinel node was clear and I will for sure be having that this time - fingers crossed I can still get a good reconstruction result when the time comes, in my early 40's and don't want to stay flat.

Thanks for telling me what your surgeon said - definitely the sort of encouraging feedback I need right now. I will for sure keep you updated on what chemo they suggest etc and we will get through this. I really am so thankful you responded. I have no doubt you will crush this treatment as well - I am sending you good thoughts, well wishes and strength to fight!

BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Jul 29, 2019 11:35AM TNBC_77 wrote:

Hi santabarbarian,

Thank you for your input - I'll look in to that as well. Glad you are doing so well! I see from your signature that you did Carboplatin. It has been mentioned to me - how was that for you? Bad side effects?

All the best!



BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Jul 29, 2019 11:52AM santabarbarian wrote:

I can't quite discern what SE came from what... taxotere and carboplatin... My friend did Carboplatin for lung cancer (by itself) and said her SE was primarily exhaustion and mental exhaustion (which I had too - also anemia). Her hair did not fall out from Carboplatin though.

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 2/10/2019 Whole-breast: Breast, Lymph nodes
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Jul 29, 2019 12:06PM TNBC_77 wrote:

Thanks santabarbarian - I appreciate the feedback. SE are so individual and no write-up on any chemo reads like a dream but I like to look at it as general information-gathering, after all it was on this forum that I picked up some great tricks to deal last time.

I had such terrible time with my EC whereas I found Paclitaxel to be 'easier' but with exhaustion, body aches and a little nausea. I got some neuropathy and oncologist wanted to stop my treatments but I wanted it all the first time. And the neuropathy went away and now that I have had a recurrence I am so glad I battled through because I am not questioning myself.

That tiredness took ages to go away - not looking forward to it!

BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Jul 29, 2019 11:54PM LaCombattante wrote:

TNBC_77:

I am really sorry that you have a recurrence.

I am currently being treated for regional recurrence in auxiliary lymph nodes (hormone receptor positive cancer). I was originally diagnosed back in 2011, and almost made it to 8 years; then the beast was back.

In my case, I opted for limited lymph nodes removal, not the full auxiliary clearance, with additional dose of radiation at a later stage (I am going through chemo now). My case was discussed by the tumor board and they felt comfortable to recommend this option for me. In fact there is a clinical trial underway that compares limited lymph nodes resection with ALND, unfortunately I did not qualify because of previous surgery, but the tumor board agreed to follow the study protocol in my case.

My surgeon ended up removing six nodes that were clearly affected (I had PET/CT before and he also did ultrasound control during surgery). two sentinels removed too andfound to be cancer free.

By now I have full range of motion in my operated arm, however, very recently I noticed that my hand tend to swell. One PT session did the trick but they recommended to continue with weekly massages for a while, to be sure that the problem does not return.

Surgery 6/19/2011 Mastectomy: Left Hormonal Therapy 8/24/2011 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/28/2019, ILC, Left, Grade 2, 6/8 nodes, ER+/PR+, HER2- Surgery 4/2/2019 Lymph node removal: Underarm/Axillary Chemotherapy 4/28/2019 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Jul 30, 2019 10:23AM TNBC_77 wrote:

Hi LaCombattante

I too am sorry to read of your recurrence - very pleased that you have full range of motion and that you could get that lymphedema solved. How are you doing with chemo - you handling the SE's ok? I found the EC tough as well as all the shots I had to give myself to help with the red blood cell count.

Sending you lots of good thoughts for a battle, and the war, won!

BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Jul 31, 2019 11:04AM LaCombattante wrote:

Hi TNBC_77

I agree, EC was tough, especially the last two infusions. Taxol so far has been easier, although the prospect of three months of weekly chemos is rather daunting. I have to remind myself to stay in the moment and not too look too far into the future.

What is your treatment plan, may I ask?

Regional recurrence is indeed considered treatable. Yes, the odds are less favorable now but we still have reasonably good chances to beat the beast and never see it again.

Wishing you strength!

Surgery 6/19/2011 Mastectomy: Left Hormonal Therapy 8/24/2011 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/28/2019, ILC, Left, Grade 2, 6/8 nodes, ER+/PR+, HER2- Surgery 4/2/2019 Lymph node removal: Underarm/Axillary Chemotherapy 4/28/2019 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Aug 2, 2019 07:29AM KBeee wrote:

My regional recurrence was not TNBC, but I did have to do chemo again. It was doable. The chemo boards on here helped me both times. Sorry to hear of your recurrences ladies. Lean on each other, take it a day at a time, and vent when needed. We're here for you.

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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Aug 3, 2019 12:02PM TNBC_77 wrote:

Hi LaCombattante,

Great to hear from you again - been thinking about you. Keep up the good work with weekly chemo, it is taxing (pun intended, queue the pity laugh for my bad sense of humor!) - I found that ginger ale did a good job in helping with feelings of nausea and when I lost most of my taste buds temporarily I just made sure to eat food with more crunch..

I still haven't got a treatment plan... I saw my nurse and surgeon the other day to drain some more fluids from chest and armpit (I have had to do that 4 times so far) and they said pathology has not come back yet which is why I have not seen my oncologist yet. Really hoping they'll hear back this week coming - the waiting is the worst. I just want to know if the cancer is still triple neg, which chemo's they suggest, when to start etc. Will keep you updated of course!

Sending lots of strength back!

BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Aug 3, 2019 12:06PM TNBC_77 wrote:

Thank you KBeee - you are right - venting on here does help. I see in your signature your recurrence did change receptors some. I am keen to know what mine is..

Chemo again sucks but one just accepts the new reality - in a way it feels easier because I have done it before but also harder for the sale reason. But yes, a little more prepared this time and less scared - I know I can do it. Thanks for the reminder though. Done any good runs this week?

BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Aug 7, 2019 02:27PM KBeee wrote:

I ran 4 miles one day and 2 miles one day. I've been busy with an investigation at work (fire investigator) and have gone on several walks. Sorry you have to do this again. Cancer just sucks.

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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Oct 14, 2019 04:07PM Toni_S wrote:

I had a recurrence in one lymph node. Breasts show no cancer recurrence. This happened 8 years after my original diagnosis. I had a SLNB at the time of my original diagnosis which was negative although isolated tumor cells were noted. I had an axillary dissection in January of this year which found only 1 out of 21 nodes were positive, followed by TC chemo and 6 weeks of radiation. I have had no issues with lymphedema so far. Recurrence in lymph nodes only is rare. Only 3-5% of women experience this. How did we win this lottery?

Dx 4/20/2011, ILC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 12/18/2018, ILC, Right, 1cm, 1/21 nodes, ER+/PR-, HER2-
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Oct 14, 2019 04:32PM Toni_S wrote:

For those of you with an isolated lymph node recurrence, what surveillance/monitoring have you had after your recurrence? My follow up is for mammogram only. I don't quite understand why ultra sound of the axilla isn't part of my screening since that is where the disease returned. Although I have had lymph nodes removed, I understand that cancer can grow in the fat or connective tissue of the axilla. My surgeon insists it’s not necessary but curious if that is everyone’s experience.

Thanks ladies, for any feedback. I don’t want to sound like a nervous nellie but after facing this disease a second time I’m perhaps overly cautious

Dx 4/20/2011, ILC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 12/18/2018, ILC, Right, 1cm, 1/21 nodes, ER+/PR-, HER2-
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Feb 4, 2020 07:01PM Butterfly66 wrote:

Hi Santabarbar

I had a recurrence 8 years after initial diagnosis. My first diagnosis was in 2008, left breast I had a double mastectomy and removed my ovaries. I’m brac 2. Second in 2016. It was in my axilla right side. 16/37. Non palpable. Détected by my annual ultra sound, thank goodness for the ultrasound my onco was having me do mammography???? When I had no breast , just implants another onco that was following me was doing the ultrasound once a year. However I missed a year because the hospital moved ( crazy) Doctors were surprised. Apparently it’s rare. It alsoCame back triple neg. first time I was er+.

I did pet scans every 4 months the first 2 years. Now I’m

Doing them every 6 months. And ultrasound once a year.so yessss to ultrasounds!!

I hope this helps

But

🐛🌷butterfly
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Jun 29, 2020 01:00PM TNBC_77 wrote:

Hi Toni_S and Butterfly66,

Sorry for a really late reply. Took some time out from the forums. I have ultrasounds during my check-ups and if I have any aches/pains/symptoms they send me to CT. My oncologist I think was surprised it only came back in the axilla as it is rare - I remember the first go-around it was said to me that if it comes back it would most likely be in visceral organs. Very happy to 'meet' more of you with the same 'lucky lottery'. Lets hope this is it for us all now . no more recurrences or cancers!!


BRCA1+ Dx 9/2017, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 6/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Lumpectomy: Left Surgery Lymph node removal: Underarm/Axillary Surgery Prophylactic mastectomy: Left, Right
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Jun 30, 2020 08:08PM Julz42XX wrote:

I haven’t updated my profile yet because I should know more information tomorrow at my oncologist appointment. I thought I was cured... I’m just really scared & upset that my doctors just flat out didn’t believe my concerns! Since my bilateral mastectomy & full hysterectomy (diagnosis was 10-17@age of 41) I just never felt good from back/shoulder pains (playing it off TE stretching being “normal”) To hot flashes and many other symptoms I made the choice to quit my job & just try to feel good. Every 6 months I did labs & ultra sound those 2 test have always been good. October 2019 the back/ shoulder pain felt like it was getting inflamed & moving down & around! I seen the oncologist 3x they said it wasn’t a cancer issue and referred me to massages & primary care. Well there is a lot more to this story but bottom line my primary care had me do xrays mri & chiropractor ( nerve damage,disc problems & sciatic) as time was going on the pain has moved down my spine into my hip with stabbing pains in my right pelvis & leg... with this COVID going on, I know getting things done takes longer but when I’m crying in pain (I’m a tough cookie) and no one would return my phone calls then finally the Dr requested a hip mri & wallA... there it was lighting up that cancer is back in my right hip, tail bone, pelvic... Days later I went in for pet scan & other ct/ mri’s and thank the lord cancer isn’t showing up in my vital organs but it’s also in my right shoulder/arm, both legs ETC. I’m really writing because I don’t want anyone else to go through this! If u have pains listen to your body & I guess stick with the oncologist not a primary care & demand more test because last October I ask for pet scan but I didn’t meet the criteria I should have just gone to another cancer treatment place but I didn’t know!! I was happy they said it wasn’t a cancer problem, I feel like such a idiot to let myself go through so much pain & I'm just really sad💚 I don’t get on much but I pray for everyone no one should have to go through this, I need a cure & extra prayers

Dx 10/2/2017, IDC, Left, 1cm, Grade 1, ER-/PR-, HER2- Dx 10/9/2017, IDC, Right, 1cm, Grade 3, ER+/PR+, HER2- Chemotherapy 10/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel)
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Jun 30, 2020 08:55PM santabarbarian wrote:

Julz I am so sorry for this happening. I wish you the best in your treatment. It is very generous of you to urge others to listen to their body and be insistent not to let a doctor brush it aside. It is good advice that will help others.

Do they know if it iTNBC or from your other tumor?

See about immunotherapy w/ chemo, if that's right for you.

hugs

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 2/10/2019 Whole-breast: Breast, Lymph nodes
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Jul 2, 2020 01:37AM Julz42XX wrote:

yes, they were able to biopsy a tumor & it is TNBC That has returned. Thank you for the support

Dx 10/2/2017, IDC, Left, 1cm, Grade 1, ER-/PR-, HER2- Dx 10/9/2017, IDC, Right, 1cm, Grade 3, ER+/PR+, HER2- Chemotherapy 10/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel)

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