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All TopicsForum: Stage III Breast Cancer → Topic: Plan to refuse ALND with a positive SNB

Topic: Plan to refuse ALND with a positive SNB

Forum: Stage III Breast Cancer — You are not alone. Meet others who have Stage III breast cancer.

Posted on: May 17, 2017 07:51PM - edited May 17, 2017 08:22PM by stephilosphy00

stephilosphy00 wrote:

Hi ladies, I had unilateral mastectomy + SNB exactly a week ago. The surgeon agrees that radiation is just as effective as nodes dissection so she only removed 2 sentinel nodes. I haven't got the pathology report back yet but she said she would let me decide what to do if any of those two nodes are positive. I think I will refuse the ALND and just have radiation instead.

Does anyone here also choose not to have ALND? I really need some positive stories to support my decision.


Thanks!

Dx at 29. Original mass 2.5 to 3 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Zoladex (goserelin)
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May 17, 2017 08:19PM Bootscootin wrote:

Steph...my breast surgeon told me before surgery that if sentinel nodes were positive we would treat them with radiation, not surgery. She felt that radiation was comparable and reduced the risk of lymphedema that goes along with ALND. Turns out that my nodes were negative but I had radiation anyway since I had lumpectomy. I am concerned that doctors are still doing ALND but I am not a doctor and maybe there are situations where it is still appropriate. I was relieved that ALND was not part of my plan

Dx 2/9/2015, IDC, Left, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2+ Chemotherapy 2/19/2015 AC + T (Taxotere) Targeted Therapy 5/14/2015 Perjeta (pertuzumab) Targeted Therapy 5/14/2015 Herceptin (trastuzumab) Surgery 8/17/2015 Lumpectomy: Left Radiation Therapy 9/28/2015 Whole-breast Hormonal Therapy 12/1/2015 Femara (letrozole)
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May 17, 2017 10:49PM ash123 wrote:

Steph, I had negative SNL so no other lymph node was taken out. I had bilateral mastectomy and had 33 days of radiation of chest wall and axilla. I hear all the time ALND and am not sure what is the best one.

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May 17, 2017 10:56PM Hopeful82014 wrote:

I'm not Stage III but did have a positive node. I knew almost from day 1 that ALND was considered automatic in my case and knew, as well, that I really did not want to go that route. In the end I did not do ALND (did do extensive RT) and have since read a number of studies that seem to support that decision. I do not lose any sleep over it. Good luck getting comfortable with whatever decision you make. None of this is easy, is it?

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-
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May 18, 2017 08:05AM - edited May 18, 2017 08:07AM by stephilosphy00

Thank you so much for all your replies! I think because I am only 30 I am just so concerned about my quality of life for the rest of life if I have ALND. Glad to see there are other surgeons agree extensive radiation can also be effective.

Dx at 29. Original mass 2.5 to 3 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Zoladex (goserelin)
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May 18, 2017 02:03PM stephilosphy00 wrote:

Just got my final pathology report back! The tumor now is 1.8cm and before chemo it was almost 3cm. They only found cancer in one of the three nodes they removed. ER and PR now are both100%, Her 2 still negative and Ki 67 is still 7.5%. No LVI found post chemo. Interestingly they also found DCIS inside the tumor and somewhere far away from the tumor which were missed by MRI. I will turn down ALND without too worrying about if it is a good decision.

Dx at 29. Original mass 2.5 to 3 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Zoladex (goserelin)
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May 18, 2017 03:04PM Hopeful82014 wrote:

That's really good news, stephilosophy00. Thanks for posting it!

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-
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May 18, 2017 04:58PM Wildplaces wrote:

Steph

There is an article on this site supporting your decision.

Also

https://www.ncbi.nlm.nih.gov/pubmed/21403615

ALND is very tricky and is both operator dependent and patient dependent for good results.

Also there is an increasing body of work discussing the overall immune response one gets from radiotherapy and it's potential benefits in cancer therapy.

Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/21/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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May 18, 2017 10:13PM GeorgiaRai wrote:

I had SNB prior to neo-adjuvant chemo, followed by BMX & rads. 8 of 8 nodes were positive, but my BS didn't recommend ALND. She felt there was no additional benefit & wanted to keep risk of LE as low as possible. In June, I'll be 5 years post-op!

Best of luck to you, stephilosophy (what a great screen name!!)

"You're braver than you believe, stronger than you seem, and smarter than you think" ~ Christopher Robin Dx 11/21/2011, ILC, 6cm+, Stage IIIA, Grade 1, 8/8 nodes, ER+/PR+, HER2- Chemotherapy 1/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/28/2012 Mastectomy: Left, Right Radiation Therapy 8/10/2012 Breast, Lymph nodes Hormonal Therapy 11/15/2012
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May 19, 2017 05:03PM SSInUK wrote:

I understood that RT and ALND carry similar risk of lymphodema - what you really have to avoid is both together. But maybe there are other opinions?

Dx 11/2014, IDC, Left, 5cm, Stage IIIA, Grade 2, 5/17 nodes, ER+/PR+, HER2+ Dx 3/30/2016, Left, Stage IIIC Surgery Reconstruction (left): DIEP flap Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Underarm/Axillary Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy AC + T (Taxol)
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May 19, 2017 05:14PM - edited May 19, 2017 05:15PM by Wildplaces

SSinUk,

While my personal opinion is that lymphodema with ALND is related to surgical expertise and patient factors ( size of breast thus mastectomy, obesity) and numbers of nodes removed, this is an easy to read comment/article and they are others, that support a benefit of Rads over surgery.

I had ALND, don't have lymphoedema so far


http://www.cancer.net/early-stage-breast-cancer-lymph-node-radiation-therapy-works-well-surgery-lower-risk-lymphedema


Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/21/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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May 21, 2017 07:53PM bookgal wrote:

Thank you for posting this. Very timely for me. This is my second time(other breast) around and I never knew that there was a choice between ALND and Radiation. I am confused though about there being a choice. My surgeon has said that SLN Pathology would be done at time of surgery and then if positive ALND would be done as part of same surgery. Has anyone had this done?


I have had restriction and some truncal lymphedema ever since prior mast. and ALND surgery and am fearing the same or worse with this one...let alone what to do about blood draws blood pressure monitoring, etc. To think there could be a choice is interesting. Any one actually done this?

This time imaging and pathology are suspicious but not clear cut (ER/PR pos. but no type or grade or even stage at this point.) so maybe no ALND is a possibility... crossing fingers... for us all!!!



Dx 6/2013, 6cm+, Stage IIIA, Grade 2, 10/13 nodes, ER+/PR+, HER2- Chemotherapy 8/25/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery 2/9/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 7/11/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 21, 2017 08:20PM - edited May 21, 2017 08:54PM by stephilosphy00

Hello Bookgal,

" Surgeon has said that SLN Pathology would be done at time of surgery and then if positive ALND would be done as part of same surgery" the surgeon I met at first said the same so I went find another surgeon who is more understanding and gave me an opportunity opinion to make my own decision. Probably it is time to seek a second opinion! Best wishes!

Dx at 29. Original mass 2.5 to 3 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Zoladex (goserelin)
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May 22, 2017 04:16AM Eian01 wrote:

Steph, My surgeon initially kept me on radiation and says it reduces risk and i am not stage iii. ALND is not my choice, but surgeon convinced of all the research and safety protocols it is backed with. Don't go for both together, Good Luck!!

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May 22, 2017 07:53AM - edited May 22, 2017 07:58AM by Wildplaces

bookgal,

This is a reference from the Amaros trial.

There is also an article in the Lancet about it.

https://www.ncbi.nlm.nih.gov/pubmed/26488192

It is relatively new work but certainly it's been floating on research discussion for about 5 years.

Surgeons operate, carpenters work in wood etc - particularly in case of previous lymphoedema I would seek the opionin of a radiation oncologist before making any firm surgical plans for ALND.

I choose to have an ALND BEFORE I knew my nodal status ( yeah I know😱...). I just wanted the whole thing out in a block without too much handling of tumour mass. As it happened I still needed radiotherapy to chest wall and supraclav - although that was a debate - the bugger was a little bigger then predicted by MRI ( unusual because MRI if anything overestimates). I made m choice knowing the surgeon very very well and knowing I am quite small so not a lot of depth to the dissection - it matters.

I think if I got lymphoedema once I would consult both surgeon and radiation before making my second decision.

Wishing you well – I am a strong believer a patient knows instinctively when a treatment fit is right for them.

Trust your gut - it will serve you well.


Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/21/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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May 22, 2017 07:57AM - edited May 22, 2017 07:57AM by Wildplaces

oh and the route you described ( if SLN positive move to ALND is what happened/happens for the last 15 yearsor more really in theatre - not at unusual and still part of " standard of care"

Last 5 years are seeing more options 😊

Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/21/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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May 22, 2017 09:00AM stephilosphy00 wrote:

Wildplaces, thank you for your information!!

Dx at 29. Original mass 2.5 to 3 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Zoladex (goserelin)
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Jun 4, 2017 02:57PM bookgal wrote:

Thank you for the information and suggestions. I hadn't even thought of a rad consult. Ill have to find another dr as my old one is no longer in practice near me.... so much to think about.Glad there is so much knowledge on this site.

Dx 6/2013, 6cm+, Stage IIIA, Grade 2, 10/13 nodes, ER+/PR+, HER2- Chemotherapy 8/25/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery 2/9/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 7/11/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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