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All TopicsForum: Triple-Negative Breast Cancer → Topic: Calling all TNs

Topic: Calling all TNs

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 1, 2010 11:59PM - edited May 2, 2010 12:02AM by Titan

Titan wrote:

I think that we tn's need to have a sign up list like some of the other threads have...maybe put your age, and also what treatment you have had or are now having.

What to do you think?

I can start: age 50, diagnosed at age 49 1/2, lumpectomy, 4 AC Dose dense (every two weeks) and 4 Taxol, Dose Dense every 2 weeks. 35 rads (including 7 boosts) mammogram every 6 months for 5 years (I think). see the onc every 3 months for 3 years, see the Bs every 6 months for 3 years (I think). see the rad onc 1 year after rads...probably won't see him any more after that...

I think this may be a good way to get all together...we can still have separate threads..but sometimes it would be nice to just go to one thread and have a cry or concern without worrying about not being on topic

What do you all think? ..

Dx 3/18/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Posts 32701 - 32730 (33,344 total)

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Jun 19, 2017 10:53AM VLH wrote:

DiV, it sounds like you're adapting well to a challenging situation. Super! I hope insurance will help with modifying your vehicle.

BanR, what a terrible decision to have to make and with so little information to guide you. I'm very sorry that you are faced with this dilemma.

Lyn

Dx 5/20/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Jun 19, 2017 11:23AM anotherNYCGirl wrote:

Div, - You truly are amazing!

Dx 1998, DCIS, Stage 0 Surgery 3/17/1998 Lumpectomy: Left Dx 6/2000, ILC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Surgery 7/10/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/31/2000 CMF Hormonal Therapy 2/11/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/11/2001 Breast Hormonal Therapy 2/11/2006 Femara (letrozole) Dx 2/2014, ILC, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 3/24/2014 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/1/2014 AC + T (Taxol) Surgery 11/19/2014 Reconstruction (left); Reconstruction (right) Surgery 1/13/2015 Reconstruction (right): Tissue expander placement Surgery 5/27/2015 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 2/22/2016 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Jun 19, 2017 03:14PM adagio wrote:

I get a mammogram every year.


Dx 8/21/2012, IDC, 2cm, Stage II, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 9/24/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/19/2012 AC + T (Taxol) Radiation Therapy 3/24/2013 Breast
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Jun 19, 2017 09:26PM 6feetover wrote:

@Cathytoo: Mine are yearly, with automatic ultrasound following.

It just dawned on me that I forgot my 2nd cancerversary on the 15th! Singing

Who knows where the time goes? Dx 6/15/2015, IDC, Left, <1cm, Stage IIB, ER-/PR-, HER2- (FISH) Dx 6/15/2015, DCIS, Left, Stage 0, Grade 3 Dx 6/15/2015, LCIS, Right Chemotherapy 7/7/2015 AC Chemotherapy 9/1/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 12/16/2015 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 2/8/2016 Whole-breast: Breast, Lymph nodes
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Jun 19, 2017 09:37PM Meadow wrote:

DiV, you are an amazing person, it is an honor to know you! I am doing good, thanks so much for asking. I am healed up, feeling like myself for the first time in 6 months. I was a very reluctant Lat Flap patient...but I admit, it was a good thing. Strength is returning to that side, and the shape of my new boob, made from my back tissue, is ok. So it was a success!

BanR, Another has given you sound counsel. I can only speak to what my own heart says, and that is perhaps this child is a great blessing. Only saying this as you did open this for us to respond. Big hugs as you search for the answer.

Annie, how are you?

Hugs to the newbies, and the lurkers!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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Jun 21, 2017 11:20AM amw5 wrote:

I haven't posted in a while, and I just wanted to check in. I hope everyone is doing ok. I'm currently doing radiation therapy treatment. I have 4 more treatments to go. I will be following up with my MO once I'm done so we can discuss my next steps.

DIV - I agree with everyone here. You ARE amazing.


(((hugs))) to everyone.

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Jun 22, 2017 11:48AM LoveMyVizsla wrote:

Cathytoo, every six months, as I am still less than two yrs from diagnosis. However, because of my dense tissue, I'm having an MRI every other six months, instead of a mammo.

Diagnosed at 51yo Dx 10/5/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Dx 10/30/2015, DCIS, Right, 3cm, Stage 0, 0/4 nodes Surgery 12/10/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 1/15/2016 AC + T (Taxol) Surgery 8/10/2016 Radiation Therapy 9/6/2016
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Jun 22, 2017 12:00PM Valstim52 wrote:

HI Cathytoo, I get mammograms once yearly as long as both the 3d and ultrasound are clear. Blood work is once yearly now, but the first year it was almost every three months. I had a limited set of blood work in March and will have more in August. Right now as long as I have no 'symptoms' then no scans. They told me due to my intense rads, and having rads 25 years ago for bc, then they will only scan me if I have symptoms. When first diagnosed I had a Pet Scan, then when hospitalized after first chemo, I had a brain ct, bone scan, then in August due to my stroke I had brain, chest and spine MRI. Oh boy.

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/10/2016 AC + T (Taxol) Surgery 5/23/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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Jun 22, 2017 06:06PM ScotBird wrote:

Hi everyone I haven't posted for ages but wanted to share that I had my first annual mammogram and it came back clear with no evidence of disease. I am so very relieved.

DiV keep going girl, you are amazing. Meadow I'm so glad you are feeling better, you've had such a tough time BanR I'm so sorry for your dilemma. My advice is to think very carefully and do what you truly want to do. Only you can decide what will be best for you and your family.

I'm worried about Cocker too.

Hugs to everyone else. Marsha, how is it going, do you still have your daughter living with you? I've lost track a bit as I've been really busy! XX


ScotBird Dx 1/18/2016, IDC, Right, 4cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 1/28/2016 AC + T (Taxol) Surgery 6/8/2016 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 7/25/2016 Breast
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Jun 23, 2017 08:33AM simplelife4real wrote:

Cathy, I get a 3d mammo every 6 months (I have dense breasts and I'm 3.75 years out).

DIV, I'm amazed at you planting all those plants! I hope your insurance issues and your phantom pain get better quickly.

BanR, I agree with the advice that your decision is a very personal one that only you and your husband can make. Getting a second (or third opinion) from a cancer doc that understands TNBC is great advice too if you are still on the fence about what to do. My heart goes out to you.

We just got back from a 24 day cruise to Scandinavia, Scotland, England, Germany, Estonia and Russia. I loved every minute of it. It's our second big trip this year. (We spent a month in Australia, NZ and Fiji over the winter.) Having cancer makes me realize that I don't want to put off doing things while our health is good.

Wishing the best for everyone here...particularly those that are in active treatment right now.

Dx 8/1/2013, IDC, 2cm, Stage IIB, Grade 3, 2/11 nodes, ER-/PR-, HER2- Chemotherapy 9/4/2013 Taxol (paclitaxel) Chemotherapy 12/2/2013 AC Surgery 2/12/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 3/31/2014 Breast, Lymph nodes
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Jun 24, 2017 07:12AM Cathytoo wrote:

How do you count your cancerversary? From the day of diagnosis, surgery or when treatment is over?

Dx 11/13/2015, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 1/18/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 24, 2017 07:24AM susie_2017 wrote:

Cathytoo. I'm counting my anniversary as the day I was diagnosed. However, an anniversary for when the treatment is over sounds good too but I'm thinking mine may be the same date!!

Oncotyping = 44 Dx 3/24/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 5/5/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/23/2017 AC + T (Taxol) Surgery Prophylactic ovary removal Radiation Therapy Whole-breast: Breast
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Jun 24, 2017 07:42AM Warrior2016 wrote:

I just had my survivorship appointment yesterday and was told my anniversary was the day treatment ended. That's the day I count for getting to my 5 years cancer free. I had neo-adjuvant chemo and then surgery so my date is April 6th. I am on chemo now but it is just my "insurance" because I have a very high risk for recurrence so that doesn't count as it is not for treatment..

Dx 9/28/2016, IDC, Left, 4cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 10/24/2016 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide) Chemotherapy 12/26/2016 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 4/5/2017 Mastectomy: Left; Prophylactic mastectomy: Right Dx 4/12/2017, IDC, Left, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 6/19/2017 Xeloda (capecitabine)
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Jun 24, 2017 08:22AM simplelife4real wrote:

Doctors (and medical studies) use the date of diagnosis as the start date for survival statistics.

Dx 8/1/2013, IDC, 2cm, Stage IIB, Grade 3, 2/11 nodes, ER-/PR-, HER2- Chemotherapy 9/4/2013 Taxol (paclitaxel) Chemotherapy 12/2/2013 AC Surgery 2/12/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 3/31/2014 Breast, Lymph nodes
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Jun 24, 2017 10:19AM jcpriest0469n wrote:

I asked my chemo doctor the same question. It from date of discovery. I thought it was after the all clear.

Dx 12/9/2013, DCIS/IBC, Left, 3cm, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 12/17/2013 AC + T (Taxol) Surgery 3/31/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 7/3/2014 3DCRT: Breast, Lymph nodes
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Jun 24, 2017 11:29AM Lookingforward66 wrote:

Hello all,

As stated many times I don't post much but read every few days.

Now for my news. Yes Scotbird, my daughter & her family are still with my husband & me at our home. Though currently she is in U.K. with grandson to visit in-laws. Father in law has met prostate cancer, stage 4. Son-in-law here for working, of course.

Now for not so good news. I am 90% sure I have mets to bone & colon. Test currently being started. Blood work & ultrasound to abdomen. Have vials for stool collection for colon. I am losing weight. Have all symptoms of bone mets plus colon. More pain as day progresses. In legs, arms & lower back. Nights bad. Low degree temp at night & lots of leg pain. Sleep very hard. Will have some type of scan soon, not sure of kind as can't take contrast on CT. If it is mets, not much I can do as can't take chemo.

This is my thoughts. I think year four is the most critical. As my scan at beginning of year four was clear. ( December 26th was my cancerversary) Last December was my start of year 4. So in middle of it this starts. Not much I can do. So I go with the Lords plan. Please keep me in your prayers.

Best to all,

Love, Marsha

Stopped chemo - Allergic reaction. Now between me & our Lord. Few options due to allergies. I'll do my best & try to keep "lookingforward"! Dx 12/10/2012, IDC, 2cm, Stage IIA, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Jun 24, 2017 12:04PM susie_2017 wrote:

lookingforward You are in my prayers!!

Oncotyping = 44 Dx 3/24/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 5/5/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/23/2017 AC + T (Taxol) Surgery Prophylactic ovary removal Radiation Therapy Whole-breast: Breast
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Jun 24, 2017 12:05PM mike3121 wrote:

Lookingforward66.

My wife's ER+ turned triple negative and has numerous small mets to spine. She's been on Xeloda for last 3 months and is due for a PET scan soon. Nail biting time for sure. My wife had a near fatal reaction to Taxol and to Neulasta (a bone strengthener). She's on Zometa, a bone stregenther, now with expected SE's. The point is, allergic to all chemo? There must be a couple dozen chemo's out there and triple negative only responds to chemo, radiation and operations.

Dx 11/12/2012, IDC, Right, 4cm, Stage IV, metastasized to bone, Grade 1, 9/19 nodes, ER+/PR+, HER2- Surgery Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Chemotherapy Other Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 24, 2017 12:28PM ScotBird wrote:

Oh Marsha I'm so so sorry to hear your news. I'm sending a ton of love and cosmic hugs. I hope you can get some good relief for your pain at night. Keep looking forward... and take good care of yourself. Keep us posted XX

ScotBird Dx 1/18/2016, IDC, Right, 4cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 1/28/2016 AC + T (Taxol) Surgery 6/8/2016 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 7/25/2016 Breast
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Jun 24, 2017 09:01PM Cathytoo wrote:

Marsha - Looking Forward...I am praying for you.

Dx 11/13/2015, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 1/18/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 24, 2017 10:58PM DiV wrote:

Looking forward you are in my thoughts and prayers. Please keep us posted. I'm in your pocket sending hugs!

Simple Life your cruise sounds wonderful glad you had a great time!

I had my CT scan Friday. The doctor called me Friday evening he said he only had the results from neck and abdomen. Doctor said that those results looked clear. I have access two my results and as reading the results it says on the next scan that there is a mass in my chest wall. The doctor knows that I read my results and had to have known that I would see that it states about the chest wall Mass. I will probably get the results from the chest scan Monday. I'm praying that the mass is scar tissue. See the doctor Tuesday. I'm really nervous after all I've been through.

Dx 6/7/2013, IDC: Cribriform, Left, 3cm, Stage IIA, Grade 2, 0/6 nodes, ER-/PR-, HER2- Surgery 7/9/2013 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Tissue expander placement Chemotherapy 9/12/2013 AC + T (Taxol) Dx 9/30/2016, IDC: Cribriform, Left, 6cm+, Stage IV, metastasized to other, ER-/PR-, HER2- Chemotherapy 1/8/2017 Carboplatin (Paraplatin) Radiation Therapy 1/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 3/19/2017 Lymph node removal: Underarm/Axillary Surgery
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Jun 24, 2017 11:35PM Trishyla wrote:

DIV,

Oh, sweetie, I'm so sorry to hear you have to spend your weekend worrying! Hopefully it will all be for nothing, and your doctor will give you the all clear.

And you're right, you have been through so much. And you've done it with grace and courage. Please know that you are an inspiration to so many of us triple negatives. I know I wouldn't have handled it nearly so well.

Big hugs and warm wishes for good results on Monday..

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jun 25, 2017 11:20AM Batesburg wrote:

Div,

Praying for you. May you find some peace today to get you through to good news (thinking after all your surgery that there has to be scar tissue and inflammation big time) tomorrow.

Janet

Dx 6/19/2015, IDC, Left, <1cm, Stage IIA, Grade 3, 2/21 nodes, ER-/PR-, HER2-
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Jun 25, 2017 11:22AM Batesburg wrote:

Hello All,

I read posts here all the time but I don't do my own posting too much.

I found a thyroid nodule a few weeks ago and had ultrasound and biopsy of 2 out of the 3 that were found by US.

Any of you had experience in this area??

As typical, I am off the charts scared.

Janet

Dx 6/19/2015, IDC, Left, <1cm, Stage IIA, Grade 3, 2/21 nodes, ER-/PR-, HER2-
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Jun 25, 2017 01:53PM VLH wrote:

Marsha, I'm so very sorry about the possible mets. I can only imagine how worried you must be.

Div, great news on the clear scans. Fingers crossed that the mass is indeed scar tissue.

Lyn

Dx 5/20/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Jun 25, 2017 04:20PM northstarnc wrote:

how big was your tumor?


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Jun 25, 2017 05:04PM DiV wrote:

Batesburg so sorry to hear about thyroid nodule. I too had a 2 in nodule which required me to have half my thyroid removed. Tumor turned out to be hurtle cell which is not cancerous. So many people get nodules cause we don't get enough iodine. North americans don't eat enough fish in order to get the iodine. Please don't worry until you get the results from biopsy. I have another 1 cm nodule on the right side of lobe which was biopsied and results were negative. Dr keeps an eye on nodule every 6 months and so far no further growth.

Dx 6/7/2013, IDC: Cribriform, Left, 3cm, Stage IIA, Grade 2, 0/6 nodes, ER-/PR-, HER2- Surgery 7/9/2013 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Tissue expander placement Chemotherapy 9/12/2013 AC + T (Taxol) Dx 9/30/2016, IDC: Cribriform, Left, 6cm+, Stage IV, metastasized to other, ER-/PR-, HER2- Chemotherapy 1/8/2017 Carboplatin (Paraplatin) Radiation Therapy 1/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 3/19/2017 Lymph node removal: Underarm/Axillary Surgery
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Jun 26, 2017 12:26AM MichCali wrote:

Marsha, you are in my thoughts and prayers!!! I hope you find some relief for your pain.

Div-- you're in my thoughts and prayers for good results & that it's scar tissue. Waiting for results is the worst!

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Jun 26, 2017 10:27AM amw5 wrote:

Batesburg - I know a lot of people that have had nodules on their thyroid (including me). I had a biopsy on mine done on May 1, 2017. It was benign. I have one large nodule and two smaller nodules on the left side of my thyroid. The large one continues to grow (so they are keeping an eye on it).

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Jun 26, 2017 10:28AM - edited Jul 4, 2017 06:32PM by amw5

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