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Topic: Calling All with Tumors 6 cm +

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Dec 2, 2011 07:42PM - edited Dec 4, 2011 07:57PM by J-Bug

J-Bug wrote:

I just wanted to start a thread for those of us with the largest class of tumor size. Mine was measured at 8.6 cm when diagnosed. Due to doing neoadjuvant therapy as my first treatment, my staging will never be totally known. I wanted to start a thread for those of us who are in this high risk group because some treatments are better than others for this group.

I would love to hear how everyone's treatments are going who have had this tumor size. Have most of you also done neoadjuvant therapy? (I hear this is more common because it reduces tumor size in order to be able to get clean margins as well as reducing the risk of spreading cells during surgery.) My lymph nodes were clear at surgery, but that makes sense since I already did a systemic treatment. How many of you ended up with lymphedema? How many opted for bmx even if it was not medically necessary? How many of you ended up finding more cancer after surgery? (I hear that this is much more common with larger tumors.)

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 6/30/2011 AC + T (Taxol) Surgery 11/8/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/9/2012 Breast, Lymph nodes Hormonal Therapy 4/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/21/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/14/2012 Arimidex (anastrozole) Surgery 12/10/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Posts 451 - 473 (473 total)

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Sep 6, 2013 11:49PM Ossa wrote:

tellie.. that is a great story, thanks for sharing.. I am also doing good no sign of anything but do worry everytime i get a pain or a headache lasting more than a day....

Today is the first day of the rest of your life.... NED Nov 2011 Dx 4/7/2011, DCIS/IDC, Right, 6cm+, Grade 3, 3/7 nodes, ER+/PR-, HER2+ Chemotherapy 5/19/2011 AC Targeted Therapy 8/11/2011 Herceptin (trastuzumab) Chemotherapy 8/11/2011 Taxotere (docetaxel) Surgery 11/22/2011 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 12/28/2011 Radiation Therapy 1/27/2012 Whole-breast: Breast, Lymph nodes Surgery 5/11/2012 Reconstruction (right) Surgery 10/26/2012 Reconstruction (right): Fat grafting, Nipple reconstruction Surgery 11/15/2014 Reconstruction (right): Fat grafting
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Nov 3, 2013 04:25PM Butchandbuddy wrote:

Hi ladies ! I am also a big tumor lady! I was diagnosed in may of this year with a 11 centimeter tumor!!!!! It could not be felt I had a mammogram did not show it they did a ultra sound because I always had cysts and found what they thought was a 3 centimeter tumor until I had a left mastectomy and found out it was 11 centimeters. When they told me I could not believe it I was in total denial. I thought I wasn't going to be around very much longer.i am almost done with chemo taxol then I have to have radiation . I am still scared what the future will bring but reading what all you girls are going through or been through gives me alot of hope.

Dx 5/24/2013, IDC, 6cm+, Stage IIIA, Grade 2, 2/2 nodes, mets, ER+/PR-, HER2- Surgery 6/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Chemotherapy 7/20/2013 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy Breast, Lymph nodes
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Nov 3, 2013 04:36PM - edited Nov 3, 2013 05:41PM by fstop

Hi ladies,

I had a large tumor also but I was DCIS. It was 14.8 x 8.2 x 5.1 cm. Doctors never believe me when I tell them.

I have not dug through all the post yet but is there anyone else that was DCIS large tumor? Did you do other treatments? I did a pre surgery study on a chemo pill to shrink the tumor but nothing else.

Hugs to all.

Dx 12/22/2009, DCIS, 6cm+, Stage 0, Grade 3, 0/4 nodes, ER+, HER2- Surgery 2/10/2010 Mastectomy: Left, Right
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Nov 3, 2013 05:39PM lago wrote:

Butchandbuddy My tumor was only 6.5cm (only 5.5cm) but that was pretty huge for me given the size of my breast. My surgeon pretty much told me I would most likely be a stage IIIa. Surprise, even with the HER2+ factor I had no nodes.

My neighbor diagnosed not long after me had smaller tumors and many nodes (also triple positive). I think she is at least a IIIa. She is 3 years NED and doing great. You will be on some kind of Hormone therapy to battle that ER+. You'll be on that for at least 5 years. You have a good chance of beating this.

fstop Do a search for Beesie. She really has done a ton of research on DCIS. She might be able to point you in the right direction.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Nov 4, 2013 09:52AM Butchandbuddy wrote:

Lago: I will be on tamoxifen for five years. I have been reading other threads It has no rhyme or reason on who gets reacurance. I have put on weight because of the steroids they give for taxol and I also founds out my thyroid is messed up so I am on meds for that so I hope my weight starts going back down. Looks like you are three years out congrats I hope I can do that. They tell me er + is a good thing but sometimes I wonder.

Dx 5/24/2013, IDC, 6cm+, Stage IIIA, Grade 2, 2/2 nodes, mets, ER+/PR-, HER2- Surgery 6/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Chemotherapy 7/20/2013 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy Breast, Lymph nodes
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Nov 4, 2013 10:11AM lago wrote:

Butchandbuddy Yes I am just over 3 years out. No reason not to think you won't get there. My theory… take care of yourself, exercise keep that weight down and take that pill. Don't worry about things you have no control over that may never happen to you. BTW most of us gained weight on chemo with steroids. I put on at times 10+lbs which is a lot for me. I had another friend put on 25. Right now just eat what you can and try to keep it healthy.

As far as the hormone positive thing. Yeah with breast cancer the glass is always half full and half empty. Triple negative is the most aggressive and most likely to recur in the first 2 years… but if you make it past the first 3 there's a really good chance you are cured. With us hormone positive we need to wait 25 years before they will say that. Still, I'm not worrying till someone tells me there's an issue.

I could give you my seat belt speech but I like this true story that happened to me 2 weeks ago:

I was in a cab and found out my driver was from Pakistan. We started discussing our favorite Pakistani restaurant (we liked the same one). I mentioned to him that it wasn't the healthiest food. He said to me "Well you got to live. You know when you go to heaven and god sees you didn't live he sends you back. God says: 'You have to live before I let you into heaven.'"

Granted everything in moderation. ;)

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Nov 4, 2013 11:09AM GraceB1 wrote:

I thought that I'd introduce myself. I found a 6x5cm in June. I'd been doing self exams but was looking for a small knot not a shallow thickening across a wide area. I knew when I found it that it was cancer even thought it took the doctors a month to catch up with me. They missed it with a needle biopsy and had to do surgery before we got proof. I could feel it growing by the day. Testing showed 3 nodes involved on pet scan but the all the other tests came back clear :-)

I'm in the middle of neoadjuvant chemo right now. We wanted to kill any stray cancer cells right away and not wait until after surgery. Had a lot of nausea and fatigue with the A/C but the tumor started shrinking right away. By the end of the fourth treatment I could just feel a few crinkles left behind. Now I'm really struggling with the taxotere. Ended up in the hospital for 8 days with dehydration and neutropenic fever after the first dose. I also have hand and foot syndrome and my hands and feet were painful and then went numb. Now they're peeling. I'm 10 days out from the second (smaller) dose and managed to stay at home this time but I sure feel lousy. I've lost 25 pounds so far and feel so weak. I keep trying to tell myself just to put one foot in front of the other and get through this but I'm so tired of feeling bad and not being able to do much but take pills and sleep. Can you tell that I'm having a bad day?

On the brighter side (?) we scheduled the smx and te for Jan. My wonderful BS said that sometimes the tumor collapses in a ball and sometimes it flattens out like a sheet of paper. She thinks that this is what mine did and even though it's so much smaller she'd be removing a lot of tissue to be sure of clean margins. Then it will be on to radiation but reconstruction will have to wait a year according the PS. Time to get off of here and over to the hospital to get my blood work checked. First time I'll be out of the house since the last treatment. Wish me luck because I'm a really bad stick.

Grace B I'm just special - primary neuroendocrine, less than .001% of all breast cancers. Start each day with gratitude. Dx 6/10/2013, Right, 6cm+, Stage IIIA, Grade 2, 2/11 nodes, ER+/PR+, HER2+ (FISH) Chemotherapy 7/11/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/7/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Targeted Therapy 2/11/2014 Herceptin (trastuzumab) Radiation Therapy 3/3/2014 Breast, Lymph nodes Hormonal Therapy 5/17/2014 Arimidex (anastrozole) Hormonal Therapy Femara (letrozole)
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Nov 4, 2013 11:28AM lago wrote:

GraceB1 Sorry you're having a rough time but it sounds like you are in good hands. Taxotere does suck but we get through it. I had Nuelasta shots from the start so I didn't get the low white counts. It eventually gets better. As far as waiting a year after radiation for reconstruction… the longer you wait the better your results will be. You really want to give that tissue time to repair. Your doctors sound great. Hang in there.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Dec 27, 2013 11:00PM J-Bug wrote:

Elizabeth, I wanted to find out if you ended up having your DIEP flap? For me it was the hardest step of the process. I am hesitant to offer a lot of advice in this area because my incisions on the under sides of the breasts came back open a couple of weeks after the surgery and they had to take me back in and put me back together. My incisions were gaping open and oozing for a couple of weeks before they got me back in. I kept diapers over them, getting help changing them often. It was traumatic. They couldn't fix it all completely so now one side is significantly larger than the other. The surgeon has a phenomenal reputation but he said that this just happens sometimes. 

I hope you ladies are doing well. I just got a fitbit for Christmas and was wondering if anyone else uses one? I am hoping to step up the activity while I am on a semester break from grad school - I only have to go to work every day right now. It feels like a vacation!

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 6/30/2011 AC + T (Taxol) Surgery 11/8/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/9/2012 Breast, Lymph nodes Hormonal Therapy 4/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/21/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/14/2012 Arimidex (anastrozole) Surgery 12/10/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Dec 31, 2013 11:31PM shells43 wrote:

Happy New Year Big Sisters!


Rt. Mx 3/11/10 no recon. FECx3-Tx3. 28 Rads. Finished 10/26/10. Arimidex. On with life. Dx 3/8/2010, IDC, 6cm+, Stage IIB, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 3/11/2010 Mastectomy: Right
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Jan 1, 2014 01:11AM wintersocks wrote:

And from GB

Dx 2/20/2012, IDC, 6cm+, Stage IIIA, Grade 2, 4/11 nodes, ER+/PR-, HER2- Chemotherapy 3/23/2012 Doxil (doxorubicin), Taxotere (docetaxel) Surgery 8/29/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 9/10/2012 Femara (letrozole) Radiation Therapy 9/16/2012 Breast, Lymph nodes
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Jan 5, 2014 01:36PM J-Bug wrote:

Happy New Year ladies!

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 6/30/2011 AC + T (Taxol) Surgery 11/8/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/9/2012 Breast, Lymph nodes Hormonal Therapy 4/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/21/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/14/2012 Arimidex (anastrozole) Surgery 12/10/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Jan 5, 2014 07:02PM ziggypop wrote:

New to this thread - had a 9cm tumor - pretty much the whole breast. y onc told me that they used to think that 'size mattered' , and now they "don't think size matters so much" - made me chuckle. Happy New Year!

Dx 5/2012, IDC, 6cm+, Stage IIIA, 5/14 nodes, ER+/PR+, HER2- Surgery 8/31/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement
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Jan 5, 2014 07:11PM wintersocks wrote:

Ziggypop,

I heard that too. But, I am having a hard time believing it. 

Dx 2/20/2012, IDC, 6cm+, Stage IIIA, Grade 2, 4/11 nodes, ER+/PR-, HER2- Chemotherapy 3/23/2012 Doxil (doxorubicin), Taxotere (docetaxel) Surgery 8/29/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 9/10/2012 Femara (letrozole) Radiation Therapy 9/16/2012 Breast, Lymph nodes
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Jan 13, 2014 01:06AM Minnie72 wrote:

Mine was between 5.5-7cm with othet smaller ones around it. I never felt the big one which was up close to my clavicle.  I felt the smaller ones but took me couple of months to get them checked because I do get lumpy breasts before my period.  I just turned 39 so never had mammo before.  

Dx 3/31/2011, IDC, 5cm, Stage IIIA, 2/12 nodes, ER+/PR+, HER2+ Surgery 5/11/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 1/2014, IDC, 5cm, Stage IV, metastasized to bone/other, mets, ER+/PR+, HER2+ Chemotherapy Abraxane (albumin-bound or nab-paclitaxel), Navelbine (vinorelbine), Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Breast
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Jan 19, 2014 01:30PM J-Bug wrote:

Welcome Ziggypop! I was told that size played a role in importance, but not the largest role, which made sense to me because it is evaluated in staging. I think, more importantly, it can play a role in our emotional perception of our illness. 

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 6/30/2011 AC + T (Taxol) Surgery 11/8/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/9/2012 Breast, Lymph nodes Hormonal Therapy 4/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/21/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/14/2012 Arimidex (anastrozole) Surgery 12/10/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Jan 19, 2014 03:37PM ziggypop wrote:

Hey June-bug, I think that that's really what my onc was saying. Before they knew about the many different things that play a role in staging and prognosis (i.e. grade, etc), size really was considered the important factor - now it is one among many factors. 

I was really glad to see this thread, because when my PCP first felt my lump, she said, "Oh my God, that's huge - that's the biggest one I ever felt."  And, I'll tell ya - that did not make me feel too dang good. I am glad to know that my lump was not the largest ever. 

Wintersocks -  Yes, but l try to figure it this way - because my lump was huge, I could feel it & I could feel it shrinking as I had chemo (I had a really had experience with chemo) - knowing how big it was helps me whenever I feel like griping about side effects of treatments - it's like I KNOW the cancer was there because I could feel it. If it were smaller I think I'd be more inclined to think (for instance) about quitting Tamoxifen. Because of the size - I'm more willing to want the most aggressive treatment. 

Dx 5/2012, IDC, 6cm+, Stage IIIA, 5/14 nodes, ER+/PR+, HER2- Surgery 8/31/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement
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Jan 20, 2014 01:54AM shells43 wrote:

Hey Ziggypop,

I had a similar experience with my breast specialist, as he was giving me the first ultrasound (after referral for failing my mammo). He was talking to the technician taking the measurements on the computer screen thing while he was passing the wand over me. She says " where do you want me to start?" and he says, "just don't go off the screen". Shit, I thought. I don't know what they measured then, but my biopsy report said the mass was 9.7 x 9.2 cm.

I'm here to say though that all is well, so having a "gentle giant" as I have heard them called might not be all bad. Hang in there!


Rt. Mx 3/11/10 no recon. FECx3-Tx3. 28 Rads. Finished 10/26/10. Arimidex. On with life. Dx 3/8/2010, IDC, 6cm+, Stage IIB, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 3/11/2010 Mastectomy: Right
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Jan 23, 2014 02:59PM nanapat6225 wrote:

Hi mine is not as large as yours 6.4cm solid mass under the left nipple.I had two mammos and a ultersound,first one 8 weeks ago.I seen my surgeon yesterday 1-20-2014 and he set a biopsy for both breast 2-03-2014.Thats if I get a referal from my PCD.  It seems it taking a long time to do so.Meanwhile it's wait and worry. I am 56 post menaposal

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Feb 4, 2014 11:04PM J-Bug wrote:

nanapat6225: It does take a little time to get the whole process going as they diagnose every aspect of the disease. I hope that you are doing okay in spite of it all.

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 6/30/2011 AC + T (Taxol) Surgery 11/8/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/9/2012 Breast, Lymph nodes Hormonal Therapy 4/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/21/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/14/2012 Arimidex (anastrozole) Surgery 12/10/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Nov 16, 2017 06:32PM Scaredbunny wrote:

Hi Belle76. Just reading your BC blog which is a fairly similar diagnosis to mine. I had a BMX with 7 lymph nodes affected and tumor was 5.6cm. I had surgery first then I dI'd 4 AC 2 Taxol and 2 more to go. Then on to radiation. My BC is IMPC. You are 6 years out at this stage. That sounds amazing to me. My oncologist has said that I am at high risk of reoccurrence. ..was this said to you by your team at the time ?

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Feb 22, 2019 04:07AM Kkmay wrote:

Thank you ladies for sharing your experiences!

It gave me hope that my mom will get cured from stage III breast cancer. My mom’s tumor is HUGE 7cm x 7cm x 5.5 cm ER-/PR- HER+. She has just started chemotherpy. Hopefully, she’ll get fully cured and I get to share her story here

Dx 1/22/2019, IDC, Left, 6cm+, Stage IIIB, Grade 2, ER-/PR-, HER2- (FISH) Chemotherapy 2/16/2019 AC + T (Taxol)
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Feb 22, 2019 02:28PM CaliKelly wrote:

My primary tumor was over 8 cm., but I just met a lady who had a 14 cm.tumor! She's 9 years cancer free and going strong! I'm currently 3 yrs free from cancer and doing great! Best wishes to you and Mom for great outcome💗

Dx 6/17/2015, IDC, Left, 6cm+, Stage IIIC, Grade 2, 8/20 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 8/10/2015 TAC Surgery 1/19/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 1/29/2016 Arimidex (anastrozole) Surgery 6/28/2016 Reconstruction (left): Silicone implant Chemotherapy 11/2/2016 Xeloda (capecitabine) Surgery 10/6/2017 Reconstruction (left): Latissimus dorsi flap Surgery 1/30/2019 Reconstruction (left): Fat grafting Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall

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