Lumpectomy or Mastectomy |
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laney64 
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Joined: Aug 26 2013 Location: Northern CA Status: Offline Points: 2 |
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 Topic: Lumpectomy or MastectomyPosted: Aug 26 2013 at 4:56pm |
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Hello, I'm really having trouble deciding upon a lumpectomy or mastectomy. I was all set to have a lumpectomy when it was thought that the mass (while on chemo) had migrated about 4cm. The mass in the original placement could not be seen on ultrasound but the smaller mass was seen. An MRI was ordered and the surgeon wanted a clip placed in the new location. When I went to have the clip placed, the Dr at the mammography clinic said that the MRI showed that the tumor did not move, and it's over 50% reduced. She felt that the new spot was a cyst. Rather than placing a clip, they drained the cyst. This has really shaken my confidence as to what else is there in my breast lurking but unidentified. The cyst is what had been palpitated in my bi-weekly exams. I can't really feel the original lump. I can feel some thickening. I've been unable to speak with my oncologist since all this has happened because she is currently on vacation. This week, I will have my 9th weekly taxol treatment out of 12 and am disappointed in my response. I'm really hung up on the size of the tumor. During the original ultrasound it was 1.7 cm, but after the biopsy it measured at 4.9cm on the MRI. My oncologist felt that this was due to the swelling and bleeding from the biopsy and that they were going with the original size. However, the doctor who drained the cyst said that the tumor was now measuring a little over 2 cm. This is still larger than the original ultrasound size. She said that they had to measure the new MRI against the old MRI. I only have 4 more taxol treatments left and am feeling discouraged that I will not be getting a PCR. Also, I still feel pain sometimes in the breast which would it mean that the cancer is still alive. If one is not going to get a PCR, would it be better to have a
mastectomy so that nothing is left over even if clean margins are
obtained. I believe that I will still have radiation if I have a mastectomy Also, have many of you had additional chemo after surgery if a PCR was not achieved? Also, does a high Ki-67 score have any impact on recurrence? I'm getting more and more anxious the closer I get to the end of chemo. Thanks, Lisa |
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Aug 26 2013 at 7:38pm |
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Dear Lisa,
Dear Laney 64,
Welcome to a Wonderful Support site that none of us wanted to join. It is good place to come for support and information.
My gut feeling, with all the controvery about tumor size, and all you've been through, is; if it were me I would have a mastectomy.
I did have a mastectomy; it was my personal choice and I have had no regrets.
I don't have an answer to your questions about PcR and Ki-67 score. I can say that heightened anxiety is prevelant with most all of us as we near the end of treatment.
May God bless you as you continue the Triple Negative Cancer Journey.
Lillie Edited by Lillie - Aug 27 2013 at 8:48am |
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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weekender09
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Joined: Mar 29 2013 Location: United States Status: Offline Points: 135 |
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Posted: Aug 26 2013 at 10:26pm |
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Lisa:
I can't imagine the emotional and mental roller coaster you are on due to inconsistent medical information coming your way. My sympathy on that. I did have PCR but opted to have a bilateral mastectomy due to my BRCA variable test result. As scare as that sounds it was so much more relief knowing that the boobs were gone that were trying to kill me. I know for me personally I would go crazy with any dense feeling or even a simple ache wondering if the cancer was back. It is difficult enough as it is. Good luck with making the decision that is right for you and for getting some definitive information when your Onc returns. Barb
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02/12/13 DX TNBC, Grade III, Stage 3, 3.3cm tumor, IMN and 1 lymph Positive, Chemo A/C T complete 6/13
BRCA1-/BRCA2+ Variance, BIL 7/13, 33 RADS complete 10/13 Remssion :) |
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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: Aug 26 2013 at 10:48pm |
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Hi Lisa,
To answer your questions: 1) Tumor size -- MRI is more accurate than ultrasound in terms of measuring size but it can't always distinguish scar tissue, reactive tissue from true tumor. Only pathology will reveal the true extent of chemo effect. Also 1.7 cm isn't that different from the MRI measurement of slightly over 2 cm, so I won't get too hung up over it. 2) Mastectomy -- doesn't remove all breast tissue so local recurrence is still a possibility. The thinking is that it is the biology of the tumor more than the type of surgery that dictates whether recurrence will occur or not. 3) Ki67 -- recent evidence suggests that Ki67 of the residual tumor after neoadjuvant chemo is an independent prognostic factor. 4) adjuvant chemo after neoadjuvant chemo is not standard but there is one trial (eribulin) that targets women who did not achieve pCR. 5) breast pain during chemo isn't that uncommon -- one interpretation is that the presence of breast pain shows that chemo is working. Bottom line, you won't really know whether you have achieved pCR until they do the final pathology on the surgical specimen. I would base your decision of MX vs lumpectomy on your comfort level. All the best, Lee |
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12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Aug 27 2013 at 8:09am |
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Dear Lisa,
I think a second opinion may help you in your decision making. I have a specific suggestion and that is to consider going to MD Anderson Cancer Center in Houston (MDACC). They have recently instituted a second opinion clinic so that a patient can go and have multiple medical specialists (Breast Medical Oncologists, Breast Surgical Oncologists, Breast Radiation Oncologists, Pathologists and others) look at your situation in one day and you walk away with their opinion. This program is designed to make the whole diagnostic process, in certain situations, efficient and less costly. MDACC has consistently been ranked the number one cancer center in the country. It may also be that MDACC will want you to have their Breast Diagnostic Ultrasound which they feel is particularly unique. If you would like to talk, I am sending you my contact information. I am a great believer in second opinions as long as it is from a major NCCN or NCI center who have experts in TNBC. The following u-tube video is not about breast cancer but rather about second opinions in general- From my experience, MD Anderson Cancer Center will not try to convince you to have your surgery (whatever you choose) there; rather they will give you their opinion as to their recommended treatment plan for you to proceed with, with your local physicians. Lisa, I am a patient advocate working on a volunteer basis. I will not give you medical advice but maybe a talk would be helpful. I can also walk you through how to get an appointment at MDACC. Some of the Breast Medical Oncologists at MDACC who are involved with the second opinion program are Drs. Stacy Moulder and Richard Theriault. I have found both of them to be excellent. Whatever you decide, we all will support your decision. By the way, you have not told us whether you tested for the BRCA mutation. Also was FISH used for your HER2/neu pathology? It should say on your pathology report if it was used or IHC (which is often used solely). Good luck to you. warmly, Steve |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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NurseLeigh
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Joined: May 29 2013 Location: Texas Status: Offline Points: 12 |
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Posted: Sep 12 2013 at 2:17pm |
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Laney - I would agree with Steve. MD Anderson is THE best place to be, esp for TNBC. I went there after chemo tx in my hometown and never looked back. I knew I was in good hands the minute I arrived. I had my mastectomy and my radiation there. In my opinion I believe that a bilateral mastectomy is the answer for our type of cancer :)
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Dx: 10/9/12 @ age 44 IDC TNBC Grade 3, Stage 2. 4.4 cm tumor BRCA neg
11/2012 Dose Dense AC/Taxol pCR!!! 3/22/13 Bilat Mast w/tissue exp. 7/19/13 Completed Rads @ MDAnderson. |
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NurseLeigh
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Joined: May 29 2013 Location: Texas Status: Offline Points: 12 |
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Posted: Sep 12 2013 at 2:21pm |
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Steve - Dr. Theriault is my Oncologist and I feel is THE BEST! Of course I'm biased
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Dx: 10/9/12 @ age 44 IDC TNBC Grade 3, Stage 2. 4.4 cm tumor BRCA neg
11/2012 Dose Dense AC/Taxol pCR!!! 3/22/13 Bilat Mast w/tissue exp. 7/19/13 Completed Rads @ MDAnderson. |
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tracyinva
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Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
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Posted: Sep 13 2013 at 12:48am |
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I would say go for the mastectomy. I am on my last taxol on Friday and decided the lumpectomy would only cause me more stress and agitation as it would include mammo's and to be quite honest I'd rather start with a clean slate. My dr told me there is a slight more risk of a local recurrence with the lumpectomy I go to Johns Hopkins in Balt and they are great one of the best so I trust my doc and I think you have to trust whoever your doc is but its what you can live with.. With my luck I'd get the cancer back.Its a personal choice really. If I can deal with all the AC and Taxol shoved in me since June I can bear the pain of reconstruction from the mastectomy. All I know is that my follow up includes blood tests at 3 months and then a pet or mri scan maybe. I guess that will be discussed at my final consult.
Good luck with whatever you decide.
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Diagnosed 4/29
Lymph nodes clear on MRI on 5/20 2x2 statge 1 or 11A AC and T 6/9 - 9/13 final mri- no lymph 4mm or less residual Lump right side on 10/16 7 nodes taken - all clear - clean margins |
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MLindaG
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Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Sep 13 2013 at 9:24pm |
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tracy, I'm surprised your onc told you there is a slight more risk of a local recurrence with the lumpectomy over the mastectomy.......my onc said there was no difference.....
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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tracyinva
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Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
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Posted: Sep 13 2013 at 9:57pm |
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yeah he did. It was a slight difference but I am just going what I was told.
There is no difference is overall longtime survival maybe that's what he meant? He told me there was no difference in that. I am just going by what my dr told me. For me that was just more undue stress for me. I'll ask him again when I go for my consult to clarify on 9/23 to make sure what I heard was true or untrue. I'll let you know.
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Diagnosed 4/29
Lymph nodes clear on MRI on 5/20 2x2 statge 1 or 11A AC and T 6/9 - 9/13 final mri- no lymph 4mm or less residual Lump right side on 10/16 7 nodes taken - all clear - clean margins |
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MLindaG
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Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Sep 13 2013 at 10:16pm |
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Thanks Tracy I would be interested in his view of it. I know my niece went to John Hopkins and just loved the Dr.'s and they definitely helped her figure out what she needed to do. She lives in Arizona was diagnosed at 29 years old with an 11 cm mass. She did not have tnbc but still at her age and what she was facing it has been a very difficult road for her. She was from the MD area which is why she went back to JH for a second opinion and eventual treatment/ for one she was more confident in their treatment plan and knowledge than who she saw in Arizona and the plus she could be near relatives and have help with her then 2 year old. She started her journey 3 months before me and today she had her reconstruction surgery!
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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tracyinva
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Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
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Posted: Sep 13 2013 at 11:44pm |
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I just sent him an email. Here is his response. Part of the top of the email is just stating I wanted the surgery done as soon as I am healed. It's posted below.
Hi
I am glad that you are doing well. Lets look at the MRI and see the result to chemo. Lumpectomy does have higher chance of recurrence vs mastectomy. Like 5-10% to 2-3% Mh Sent from my iPhone |
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Diagnosed 4/29
Lymph nodes clear on MRI on 5/20 2x2 statge 1 or 11A AC and T 6/9 - 9/13 final mri- no lymph 4mm or less residual Lump right side on 10/16 7 nodes taken - all clear - clean margins |
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tracyinva
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Joined: May 23 2013 Location: Alexandra, VA Status: Offline Points: 219 |
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Posted: Sep 13 2013 at 11:48pm |
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I also had 2 opinions. One from my normal doctor what I hated then went to JH and they definitely treat me well and individualize the care of the treatment and what is best for your situation and do not make you feel like your just a number. I am just lucky to live fairly close to travel to one of the better hospitals. You are more than welcome to research or do your own work on his email. That is just what he sent me when I emailed him. Good luck and if you need or have any other questions just let me know. I would just say if you are looking for more peace in my eyes it would make more sense for me because I have horrible anxiety like anyone about it coming back so just chose the less likely but it's still a personal decision.
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Diagnosed 4/29
Lymph nodes clear on MRI on 5/20 2x2 statge 1 or 11A AC and T 6/9 - 9/13 final mri- no lymph 4mm or less residual Lump right side on 10/16 7 nodes taken - all clear - clean margins |
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