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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 7/1/2011 AC + T (Taxol) Surgery 11/9/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/10/2012 Breast, Lymph nodes Hormonal Therapy 4/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/22/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/15/2012 Arimidex (anastrozole) Surgery 12/11/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Feb 11, 2012 03:26PM cdairth wrote:

J-bug, I finished rads 4 days ago. My skin is red and pimply but okay I think. When did yours start to "break down?" What are you using for skin care? I'm just using an Aloe gel a couple times a day.

Cath. Neoadjuvant Fx3 Dx3, Masectomy, Tamox, Rads Dx 5/20/2011, IDC, 6cm+, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Feb 11, 2012 03:36PM Elizabeth1959 wrote:

Anafoefana
Again I think when you tell someone they would feel the lump if they knew their body, your're adding to the notion that the victim is somehow to blame for her own cancer. In my case, a very large cancer. I dont think that if you had my breasts and my cancer, you could have felt it. After I wrote that post I remember the radiologist, breast surgeon and oncologist palpating my breast, no one felt it. Neither did I and neither did my husband. Cancer is awful enough, please don't make it worse by implying I should have detected it sooner.. More than anything else, I wish I had discovered it before it was huge.

7/10 right mastectomy, dose dense AC, 12 weeks taxol,rads,arimidex Dx 6/28/2010, IDC, 6cm+, Stage IIIA, Grade 2, 1/17 nodes, ER+/PR+, HER2- Surgery 3/21/2013 Reconstruction (right): DIEP flap
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Feb 11, 2012 04:30PM - edited Feb 11, 2012 04:49PM by twistedsteel

I have wondered if, 15 yrs ago when I had trouble keeping milk flowing for my daughter from the affected breast as well as a couple of bouts of mastitis weren't caused by the very beginnings of ductal carcinoma in situ. In other words, cancer cells beginning to block or alter the breast's milk in some way.

I wanted BS to take other breast bc my gut told me there was something wrong w it. She strongly recommended waiting. My RO said he looked at all the images of mynleft breast and saw nothing. I dont feel anything when I do a regular BSE but if I roll to the other side, down deep, I can feel something so similar to what the tumore felt like but instead of being almost round but ovoid, this feels very elongated ovoid shaped. I am going to have RO check it again bc he is the next appt I have scheduled in the whole BREAST CANCER DANCE OF DOCTORS. Lol.

End breast cancer by 2020. Breastcancerdeadline2020.org Dx 4/25/2011, IDC, 6cm+, Stage IIIA, Grade 2, 3/12 nodes, ER+/PR+, HER2-
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Feb 11, 2012 10:06PM FLislander wrote:

I also had problems breast feeding on the bc side 7 years b4 dx

Dx 11/10/2011, IDC, 5cm, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- Chemotherapy 11/20/2011 AC + T (Taxol) Surgery 4/4/2012 Mastectomy: Left Radiation Therapy 5/10/2012 Hormonal Therapy 6/25/2012
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Feb 11, 2012 10:45PM J-Bug wrote:

I had a clogged duct on the affected side, not quite as bad as mastitis, but still infected. I breast fed in 1996-98. My kids are 16 months apart. I was pregnant with one and nursing one at the same time.

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 7/1/2011 AC + T (Taxol) Surgery 11/9/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/10/2012 Breast, Lymph nodes Hormonal Therapy 4/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/22/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/15/2012 Arimidex (anastrozole) Surgery 12/11/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Feb 12, 2012 05:35AM Robyn_S wrote:

I breastfed my daughter 1998-2000 and had extreme problems with blocked milk ducts and mastitis all along. I thought it was just part and parcel of being an older mother - I was 35. So different to my experience with my first daughter 14 years earlier - breast feeding was a breeze. Now I think that was an early warning sign of the cancer. The mastitis was in the cancer side too but I had blocked ducts o. Both sides all the time. I had a BMX and the non cancer side - cleared by MRI so prophylactic, was examined and found to contain multifocal LCIS. The signs are easy to see in hindsight! I also had for the last couple of years pre dx, a deep tingling itchy feeling in the cancer side on occasion - no other signs till I found the fibrosed thickened area this time last year.

Age 46 @ Dx, BMX, FEC/T, Rads, Tamoxifen, Femara, DIEP 2012 ( the works!!) Dx 3/8/2011, ILC, 6cm+, Stage IIIA, Grade 1, 1/5 nodes, ER+/PR+, HER2-
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Feb 12, 2012 08:27AM anafoefana wrote:

Elizabeth59,

I would not minimize anyone's cancer as I am a cancer patient myself.  I am sorry if that is what you thought I was implying.  I sure did not mean for it to come across that way.  I was merely commenting on "how can someone feel a small tumor".  Many people find their tumors before a doctor does. I think it is important for us to know our bodies.  That does not imply that you or anyone else is responsible for the stage of your disease. I apologize if that is the way it came across. 

TCH 7/2011- 10/20/2011. Lumpectomy 11/29/2011, 12/5 biopsy results, Dancing with NED. January-February 24, 2012, radiation. Herceptin until June 2012 Dx 6/10/2011, IDC, 6cm+, Stage IIIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Feb 12, 2012 08:31AM Elizabeth1959 wrote:

Anafofana

Apology accepted. Thanks for the kind words

7/10 right mastectomy, dose dense AC, 12 weeks taxol,rads,arimidex Dx 6/28/2010, IDC, 6cm+, Stage IIIA, Grade 2, 1/17 nodes, ER+/PR+, HER2- Surgery 3/21/2013 Reconstruction (right): DIEP flap
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Feb 12, 2012 04:56PM J-Bug wrote:

I love this group! You ladies are going to make me cry... : )

I hope everyone has a wonderful, healing and relaxing day. I am going to go put on my burn cream, put my arm up and watch a movie. My rad burns are oozing and spreading and making my shirt stick to my skin. It is so painful! So I got the movie 50/50 and it's my afternoon off now that the grocery shopping and menu planning is done. 

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 7/1/2011 AC + T (Taxol) Surgery 11/9/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/10/2012 Breast, Lymph nodes Hormonal Therapy 4/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/22/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/15/2012 Arimidex (anastrozole) Surgery 12/11/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Feb 12, 2012 05:31PM 5kidsMom wrote:

Question that has been going around in my mind for a bit.  Wondering if any of you ladies can shed light for me.  What is the point of a SNB *after* the neoajuvant chemo?  I mean to say, if the chemo worked as it should, then nodes SHOULD be negative right?  Wouldn't a SNB before the start of chemo give a better picture for the docs to go by? 

Maybe I need a hobby or something to better occupy my mind :)  Just thinking back over my treatment and now thinking that the SNB I went through (very painful) wasn't necessary.  Before starting chemo, the docs noticed "enlarged" axillary lymph nodes, as well as an enlarged intramammary node.  The surgeon thought he could also palpate enlarged axillary nodes.  They did an ultrasound guided lymph node bx which was negative.  At that point, it was *my* impression that there was no cancer in the nodes so they did not persue it.  

Fast fwd to surgery time, the doc tells me he will be doing an axillary node dissection.  I tell him no, I don't want to those nodes messed with since they were negative.  He tells me the other option is a SNB, so I agree to that.  During sugery all nodes are negative, and they determine that there was a 100% response to the chemo.  

Fast fwd again to my consultation with the rads doc.  He insists that I need aggressive rads, based on the size of the tumor, and on the "clinically positive" intramammary node.  He says that he only very rarely gives rads to the IM nodes, but that in my case he strongly recommends it.  He further tells me that he believes there was cancer in my axillary nodes, "they just didn't find it".  

I'm planning to raise these questions when I see my MO next, but not sure I will get answers.  the MO who was treating me initially has left the practice, so this guy doesn't know my case as well.  I'm just wondering if there is a difference of opinion between the 2 offices or what. And if it matters, I was treated with 4 AC dd, surgery 3 weeks later, then started 12 weekly tx of Taxol 4 wks post surgery.  Got tons of rads: 38 tx, supraclavicular, axillary, intramammary and along the "mastectomy bed".

Dx 1/31/2011, IDC, 6cm+, Stage IIIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 2/24/2011 AC Surgery 5/25/2011 Mastectomy: Left Chemotherapy 6/25/2011 Taxol (paclitaxel) Radiation Therapy 10/1/2011 Breast, Lymph nodes Hormonal Therapy 12/9/2011
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Feb 12, 2012 05:57PM lago wrote:

5kidsMom I has surgery before chemo. Standard care it to remove at least level I nodes (not sentinel) on tumors bigger than 5cm because the probability is at least 80% that there will be some mets in the nodes. My BS was worried I would have micromets.

In your case (just my guess, I don't really know) the fact that its in your intramammory node might give a strong indication that  you could have micromets in your nodes. If you did the chemo might have killed it but since you aren't removing the axillary nodes they want to do radiation instead.

The risk of LE is a little lower with just rads versus removing lots of nodes. Be sure they measure your arm before rads just in case of LE. You need a baseline. I never got one so we really don't know how much my LE arm swelled.

Hope that makes sense.

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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Feb 12, 2012 06:15PM anafoefana wrote:

5kidsmom,

My RO convinced me to do radiation on the nodes also because of the size of my tumor.  She presented my case to the interdisciplinary board at the hospital and based on current research, she felt  and everyone on the board agreed that it was really important to have them done. I didn't show any node involvement in the beginning, but I don't know if I had micromets.  I had a SNB, she took 3 nodes and nodes and margins were clear.  The RO said that coming out of neoadjuvant treatment it is hard to say that the nodes were not involved and she told me that without radiation, my  odds of recurrence increased significantly.  So, I have 3 more rad treatments on my whole breast and nodes, and will have 8 boosters on the lumpectomy site.  The way I saw it, if I am getting radiation anyway and it improves my odds, go for it.  

J-Bug, I am sorry you are having such a hard time with rads.  I am doing okay with them.  My armpit is sore, but nothing terrible.  I quit wearing a bra this weekend, because it was rubbing.  I am wearing a camisole with a built in bra, and it is working.  I hope your burns heal quickly.  I am using Miaderm, emu oil and aquaphor nightly.  I have also been putting aloe vera on right after the treatments before getting dressed.  I just fan myself dry and that seems to help cool things off right away. 

I have to share a story.  I mentioned I work with children with autism.  I have one little guy that has been pinching breasts.  On Friday I was putting another child in a chair and this little one ran across the room and from behind me put his arms around me and pinched me as hard as he could.  He could have at least pinched my other side!!  I screamed so loud that it startled everyone.  I was in a lot of pain for the rest of the day. I told my assistants I may have to take leave until he stops doing that!!  It hurt! Never a dull moment in my classroom!

Back to reality tomorrow.  I hope everyone has a great week. 

TCH 7/2011- 10/20/2011. Lumpectomy 11/29/2011, 12/5 biopsy results, Dancing with NED. January-February 24, 2012, radiation. Herceptin until June 2012 Dx 6/10/2011, IDC, 6cm+, Stage IIIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Feb 12, 2012 06:51PM Ossa wrote:

I also am having my nodes radiated because of size of tumor.. Did not have SNB, during mastectomy they took 7 nodes, Three showing "dirty" but no cancer cells. As I had neoadjuvant chemo we will never know if I had node involvement.. I am having 25 whole breast +  3 clavicle rads total of 28 treatments..

Anafo... How do you like the emu oil? Curious about it.. I was told by Rad nurse not to use oil of any kind also no Aloe Vera.. Choose to ignore them telling me no Aloe, started using it again this weekend and aaaaah the relief

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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Feb 12, 2012 07:37PM windlass wrote:

I used emu oil and cocoa butter on the radiation burns. The emu oil I special ordered and waited for smelled just a touch rancid, so I only used it a couple of times. (And sheesh, it was $24 for 3 or 4 ounces!) I attribute these oils to the great, great, great response my skin had to rads. Just enough pinkness/redness to let them know it worked, but nothing more than that.

"He will cover you with his feathers, and under his wings you will find refuge." -Psalm 91 . . . . . . Completed: UniMX, DIEP reconstr; A/C x 4; TDM1 x 4; Taxotere+Herceptin x 4, 33 Rads; TDM1 Phase II Trial x 9; Tamoxifen, prayer. Brain Mets 2015. Dx 1/18/2011, IDC, 6cm+, Stage IV, metastasized to brain, Grade 3, 12/28 nodes, ER+/PR+, HER2+ Radiation Therapy Breast, Lymph nodes
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Feb 12, 2012 07:58PM Ca1Ripken wrote:

" anafoefana
Leanna9,  I think that if a person knows her body,  she can detect changes, even if they are small.  I guess it might be harder for someone who has large breasts, but I think it is very common for women to detect their tumors before they are picked up by a dr. or mammo.  "

It is extremely difficult to not take offense to this statement. Not only did I pick it up before "regular" mammos.... A digital mammo 4/3/10 was CLEAR when clearly there was a 7cm tumor in there. (I had at least 5 regular mammos before that one also, plus frequent BSEs and annual professional exams). I know you did not mean to offend me but you did.

Dx 4/23/2010, IDC, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2+ Dx 3/13/2013, IDC, Stage IV, mets, ER+/PR-, HER2+
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Feb 12, 2012 09:40PM Ossa wrote:

Wow ladies.. I feel I must come to Anafoefana's defence.. I do not believe she intended to offend anyone. I for one enjoy her postshe has a lot of knowledge to share. I also found my large tumor after having a clean mammo.. If I did not know my body I would not have found it.. I do believe Anafoefana meant to point out the importance of doing your self exam not rely only  on drs.

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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Feb 12, 2012 09:53PM lago wrote:

I don't think Anafoefana meant it either otherwise I would be offended too.

I do have a couple of comments. First of all yes we should know our bodies but they do change and that's a normal thing. My breasts got a little fuller in my mid 40's (as well as my thighs and a few other areas Tongue out) Doesn't always mean there is a problem. Some of it is aging

I had very dense breast tissue and my tumor was in the posterior region. No one ever felt a "lump." Eventually there was a hard area but that wasn't the lump. The small almost pin size drop of blood in my sports bracoming from my nipple that set things in motion… and I mean small. Not everyone is that visual. I even dismissed it for the first couple of weeks till I realize it was blood. I thought it was a spec of dirt.

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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Feb 12, 2012 10:05PM J-Bug wrote:

Leanna9: I hope that you don't think that we are beating up on you. Did you read above where anafoefana was apologizing for this statement? 

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 7/1/2011 AC + T (Taxol) Surgery 11/9/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/10/2012 Breast, Lymph nodes Hormonal Therapy 4/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/22/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/15/2012 Arimidex (anastrozole) Surgery 12/11/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Feb 12, 2012 10:27PM 5kidsMom wrote:

Lago I appreciate what you had to say about the standard care.  Unfortunately, for whatever reason, I didn't get this info from my surgeon.  To be fair, I was having a very difficult time dealing with the surgery (mentally/emotionally) so it's possible he brought it up and I didn't "hear" it.  Would be strange because my hubby was with me whenever I was at the surgeon's office and he didn't hear it either.  I really wish now that I had more info going into surgery. :( 

I also did not get my arm measured pre-rads.  Pretty sure I have a little lymphedema going on under my arm and in my chest wall, but my RO really did not want to hear about it.  When I would bring it up he would tell me "of course you will have some swelling since you had surgery".  Hmmm, surgery was in May, I'm thinking any swelling related to that would have resolved.  Have an appt with my primary care this week, and she is really good about persuing things, so I'm hopeful she will help me if there is cause for concern.  

Anafoefana I am SO jealous of you wearing a bra during rads!  Your skin must be doing great.  By the end of rads I had no skin in my armpit, and that wound stretched the length of my MX scar.  I will say I was amazed by how quickly it healed once rads were done though!

Dx 1/31/2011, IDC, 6cm+, Stage IIIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 2/24/2011 AC Surgery 5/25/2011 Mastectomy: Left Chemotherapy 6/25/2011 Taxol (paclitaxel) Radiation Therapy 10/1/2011 Breast, Lymph nodes Hormonal Therapy 12/9/2011
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Feb 12, 2012 11:05PM lago wrote:

5kidsMom things happen so fast at the beginning for all of us. I wish I knew more too. Don't be concerned that you didn't get "standard care". Just because it's standard doesn't mean it's right for you. Standard care for premenopausal women that are  hormone positive get tamoxifen. My onc put me on Anastrozole because she felt my cycles at my age (and family history) would not come back. Not standard care but I'm fine with that.

My onc first diagnosed me with LE but didn't send me to a PT. When it continued to get worse I then contacted my PS. He sent me to a specialist who then sent me toa PT. My onc is great but this was the one time she didn't seem too concerned so I just moved on to the next MD. My PCP is also great. I'm sure your PCP will send you to a PT at least for an evaluation.

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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Feb 13, 2012 02:32AM windlass wrote:

Maybe I don't know my body well at all because I somehow missed a tumor in my B-cup breast until it had grown to the size and shape of a mouse. It must have been there for some time to get that big. I still wonder how I could have thought all that weird lumpiness was normal. *sigh*

I still don't feel like I know my body very well, and I've been in it for over 40 years.

"He will cover you with his feathers, and under his wings you will find refuge." -Psalm 91 . . . . . . Completed: UniMX, DIEP reconstr; A/C x 4; TDM1 x 4; Taxotere+Herceptin x 4, 33 Rads; TDM1 Phase II Trial x 9; Tamoxifen, prayer. Brain Mets 2015. Dx 1/18/2011, IDC, 6cm+, Stage IV, metastasized to brain, Grade 3, 12/28 nodes, ER+/PR+, HER2+ Radiation Therapy Breast, Lymph nodes
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Feb 13, 2012 06:21AM anafoefana wrote:

Wow... again I apologize if I offended anyone by my comments.  I was only saying what I thought, it never occured to me that it was offensive.  I am sorry.  What else can I say? I  would really appreciate it if we can just let this go now.  We are all going through this and there is no need to be hurtful or sarcastic. Ossa, you are right,  I was merely trying to stress the importance of self exams.  Maybe it won't help everyone, but it does save lives. It certainly did mine.  I was not due for another mammo for several months and had I not felt my tumor I would probably not be where I am now.  

5 kidsmom and Ossa, my skin is doing well.  I am slightly pink, mostly tanned. I don't know if it is the emu oil, or the combination of that with Miaderm, aquaphor,and aloe.  I really like emu oil, it doesn't have a smell and is absorbed quickly.  

TCH 7/2011- 10/20/2011. Lumpectomy 11/29/2011, 12/5 biopsy results, Dancing with NED. January-February 24, 2012, radiation. Herceptin until June 2012 Dx 6/10/2011, IDC, 6cm+, Stage IIIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Feb 13, 2012 11:09AM - edited Feb 13, 2012 11:13AM by windlass

Ana: No, I was not offended at all! Seriously. The whole weird turn this thread took just got me to thinking that I really DON'T feel like I know my body. In fact, I'm feeling kind of betrayed by it, and wondering if its my fault or my body's. Or maybe it's the fault of both of us for not having a better relationship. I'm an "in-my-head" kind of gal, and sometimes this body of mine just feels like a gallumphing, needy prison, or a demanding fair-weather friend that could snuff me out if I don't continually appease it. I probably need to start thinking of my body as the temple of the Holy Spirit if I am ever going to overcome that.

I totally get where you were coming from, and what you said made perfect common sense. I'm sorry people took offense, because it was clear none was intended. 

I wonder if we big tumor gals are thin-skinned about "Why didn't you find it?!?" type questions because we have asked ourselves that same question so many times - and not always in a kind way. That's obviously not what you asked or said, Ana. But it might explain why everyone here feels a little bit jittery.

I mean really, why the hell DIDN'T we find these nasty, killer tumors when they were tiny little lentils like everyone else? Then we could be the Good Prognosis stage 1 gals instead of the poster children for everyone's head shaking and chiding comments.  ("You know, if you had detected that earlier...")

You just got caught in our own internal crossfire.  Warm hugs to you, Ana.
And I'm glad your emu oil is fresh! I feel ripped off by mine, but think it still worked wonders.

"He will cover you with his feathers, and under his wings you will find refuge." -Psalm 91 . . . . . . Completed: UniMX, DIEP reconstr; A/C x 4; TDM1 x 4; Taxotere+Herceptin x 4, 33 Rads; TDM1 Phase II Trial x 9; Tamoxifen, prayer. Brain Mets 2015. Dx 1/18/2011, IDC, 6cm+, Stage IV, metastasized to brain, Grade 3, 12/28 nodes, ER+/PR+, HER2+ Radiation Therapy Breast, Lymph nodes
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Feb 13, 2012 11:29AM Ossa wrote:

Going to pick up some emu oil after treatment today, sound like it is worth trying.

Windlass.. Well said.. I have asked myself many times.... how could I not have found it earlier... I have done self exams for years as I have had lumpy breasts for as long as I can remember.. But then again.. when I went to my doc he was not concerned as he said the lump did did not feel like a cancer lump?????? Yes I am getting a new doc when I am done with treatment...

Hope you all have a great day.. You ladies going through rads, slap on the moisturisers.. For you ladies going through chemo.. remember your meds.. For you ladies recovering from surgery.. Listen to your body  do not over do it even if you feel you can.. Whatever stage you are in your treatment take some time for yourself today and be proud of how far you have come in this journey none of us want to be part of.. Hugs to all

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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Feb 13, 2012 11:43AM 5kidsMom wrote:

Windlass:  "I mean really, why the hell DIDN'T we find these nasty, killer tumors when they were tiny little lentils like everyone else? Then we could be the Good Prognosis stage 1 gals instead of the poster children for everyone's head shaking and chiding comments. ("You know, if you had detected that earlier...")"

 Oh my gosh you hit it on the head for me.  People don't say that outright, but you can hear it in the voice and see it in the eyes when you tell them the tumor size.  Adding to my personal guilt--I'm a nurse.  How in the world did I not feel it sooner?

One thing that has been comforting to me is that if I HAD found it sooner, I probably wouldn't have my youngest son.  He was 3 1/2 at the time of diagnosis, and I'm guessing that my tumor friend had been around before that.

Dx 1/31/2011, IDC, 6cm+, Stage IIIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 2/24/2011 AC Surgery 5/25/2011 Mastectomy: Left Chemotherapy 6/25/2011 Taxol (paclitaxel) Radiation Therapy 10/1/2011 Breast, Lymph nodes Hormonal Therapy 12/9/2011
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Feb 13, 2012 11:45AM missy_111 wrote:

windlass - size doesnt really matter.  Mine was only 7mm, not even 1 cm, and it had spread to 3 lymph nodes. I feel like I didn't even get a chance to find mine!

Dx 8/12/2010, IDC, <1cm, Stage IIB, Grade 3, 3/22 nodes, ER+/PR+, HER2+ Chemotherapy 10/16/2010 AC + T (Taxol) Hormonal Therapy 2/19/2011 Targeted Therapy Herceptin (trastuzumab)
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Feb 13, 2012 11:47AM windlass wrote:

5kidsmom: I am nodding vigorously. My husband pointed out to me that had I found the tumor even a month earlier or a month later I would not be on the cool clinical trial I get to be part of. So there's a silver lining here, too.

"He will cover you with his feathers, and under his wings you will find refuge." -Psalm 91 . . . . . . Completed: UniMX, DIEP reconstr; A/C x 4; TDM1 x 4; Taxotere+Herceptin x 4, 33 Rads; TDM1 Phase II Trial x 9; Tamoxifen, prayer. Brain Mets 2015. Dx 1/18/2011, IDC, 6cm+, Stage IV, metastasized to brain, Grade 3, 12/28 nodes, ER+/PR+, HER2+ Radiation Therapy Breast, Lymph nodes
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Feb 13, 2012 12:37PM lago wrote:

Missy is correct. Size doesn't matter. We are the same stage yet my tumor was 6.5cm (5.5cm invasive) but I have no nodes. The other issue is some of us have really fast growing tumors so a year can make a big difference. My BS said I had my cancer for only 4 years! Also location and density of tissue complicate finding these things. But again I was not offended by anafoefana's post. One thing I have learned on this forum is at times people to misinterpret peoples intentions when they post. We know who the "bad girls" are and they are not on this thread.

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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Feb 13, 2012 01:49PM J-Bug wrote:

"I mean really, why the hell DIDN'T we find these nasty, killer tumors when they were tiny little lentils like everyone else? Then we could be the Good Prognosis stage 1 gals instead of the poster children for everyone's head shaking and chiding comments. ("You know, if you had detected that earlier...")"

My MO told me it wouldn't be easy to find because it is not a round "lump" as we all call them. It was something that wove its way through the ductal system, forming hardened tissue, appearing to be dense tissue. In us young ones, the dense tissue is even more expected, therefore, not questioned as often.

My MO was very supportive of my desire to do bmx even though on the "good side" I had only had two biopsies that both came back clean. He said with the elusive nature of these tumors and how long it took to find, he thought that I would rest more easily with it being out of the question. He never once tried to make that decision for me, just seemed to be quite supportive when I did come to that decision.

Age 40 at diagnosis. Dx 6/10/2011, IDC, 6cm+, Grade 2, 0/4 nodes, ER+/PR-, HER2- Chemotherapy 7/1/2011 AC + T (Taxol) Surgery 11/9/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 1/10/2012 Breast, Lymph nodes Hormonal Therapy 4/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/22/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/15/2012 Arimidex (anastrozole) Surgery 12/11/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Feb 14, 2012 12:20AM Ca1Ripken wrote:

I did not mean to come off like I apparently did... I guess other's have nailed it... after hearing at first, "at least you caught it early" (because I found it, so they 'assume' it was early)... to reality, which is I didn't catch it early, but rather early enough  :)... I am sorry.  It is never my intention to make anyone feel bad... I'm sorry, Ana.  I just feel jipped... my boobs aren't huge but my tumor was... how is that possible.  And, my onc found a lump in my left breast 2 weeks ago, that I had not felt... WTH?  It turned out to be a fat lobule (after MRI)... but I had been doing BSEs in the shower, and this lump was not palpable while standing... so remember different positions when feeling!!! 

Again, I'm sorry  :(

Dx 4/23/2010, IDC, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2+ Dx 3/13/2013, IDC, Stage IV, mets, ER+/PR-, HER2+

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