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Old 03-07-2008, 02:15 PM   #1
bbscott2
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Exclamation Herceptin and No Surgery???? Need help!

I'm new here. My name is Briony and my mom has breast cancer. She has been on herceptin and toxol for 12 weeks. Before she started we faced the decision of a lumpectomy and then chemo or try to shrink the tumor with chemo and then do a lumpectomy. So we went the herceptin route. After 3 weeks it had shrunk considerably. By 12 weeks the doctor was shocked. It was completely gone. Only on an MRI can you see any trace of cancer. The radiologist said that it was basically like if you had a forest fire that was put out but there were a couple of embers still lit. So, we think this is good news, right? Well, now the oncologist is insistent on a mastectomy. They don't think it's possible for her to have reacted that well to the herceptin and they want to take the whole breast off. We've seen a surgeon and he actually sees our side of it. Our theory is, why can't we try to do more herceptin and another MRI. Couldn't it go away completely then? My mom is not very well and could not really handle surgery. Other than me and my step dad, we have no support group. I am trying to raise two kids along with help my mom. She has an autonomic disorder and is generally pretty sick. Anyway, does anyone have any experience with this? Any advice? We are desperate for information. I hope this isn't too confusing. Please feel free to ask any questions if you need me to clarify.

Thanks in advance,
Briony
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Old 03-07-2008, 10:34 PM   #2
Bev
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Get more opinions with other docs! There are a lot of options. I think they still tend to do minor lumpies even if you have great results with neoadjuvant therapy. Almost like a biopsy, especially if you have DCIS, scattershot. I don't know the whole story, but it doesn't seem like a radical mastecomy is warranted. If the embers are still lit, they aren't necessarily in the breast. If embers are still lit, that would call for chemo. It seems like they could remove a small amount of tissue in the area of concern. No guarrantees, but Herceptin does seem like it will keep your mom NED for awhile.

So, your mom should do H for another 10 months. It's her choice if she wants surgery. If ER/PR+ should do hormonals. If ER?PR -, ... don't know. Post the Path report so the more medically minded can respond.

Good luck, BB.
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Old 03-08-2008, 09:41 AM   #3
wakeboardgirl
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I was on Herceptin, avastin, and taxotere for around 7 mnts and then had my masactomy. I had mets to the spine. The chemo worked great. I was NED prior to the surgury. I was home about 2.5 weeks after the surgery. Honestly, it eased my mind to get read of the the breast that caused so much trouble. It wasn't the funest exiperence but I honestly believe the chemo was harder than the surgery. I have continued the hercptin and avasin in hopes that there is not a re-occurence.
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Old 03-09-2008, 09:34 AM   #4
Lani
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questions

you did not give your mother's age (treatment can vary based on advanced and and concurrent conditions) Also , we can assume her cancer has not spread anywhere else (which you assume because you would have mentioned it if it had--if you are only reporting what you have heard from others, I would make sure to ask that directly--people are often afraid to ask, as they are afraid of the answer)
From my readings of articles on neoadjuvant therapy, a lymph node biopsy is often done to be sure the herceptin had the same effect there as in the breast

I have not read of mastectomies being required after such a great response, but you did not say how large the tumor had been, whether there were multiple tumors. or other factors which might have influenced the oncologist in his/her recommendation.

Does the oncologist who treats your mother only treat breast cancer; does the surgeon who "sort of agreed" with you only do breast cancer surgery or at least a lot of it.

Since your mother is already quite sick, getting a second opinion would perhaps help you to try to figure out what the least traumatic/toxic additional treatment might be so as not to worsen her condition further.

Did they only give herceptin because they worried about her heart? Are they thinking they might need to stop the herceptin soon because of her heart? Are they thinking to remove the breast to avoid radiation therapy?

Is that because she would have trouble getting to the hospital for 33-35 treatments? If that is the problem, there is IORT available on trials where they give on radiation treatment at the time they do surgery ( a lumpectomy) with only that one treatment required. More often it is possible to find a trial of APBI--usually five treatments given over a week's time of either implanted or external beam radiation therapy given after a
lumpectomy.

From what I read, there are alternative, but if she lives in a remote rural area and has no means for transportation or is too sick, this might be what these doctors are keeping in mind.

Certainly sounds like you are doing the right thing by seeking out others experiences and trying to find out the alternatives, if only to inquire with her present doctors if not to get other opinions.

She is lucky to have you!

Hope this helped.
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Old 03-11-2008, 11:19 AM   #5
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Hi Lani,

I was hoping you would respond. From looking around the board, it seems that you are very knowledgeable. I read the article you posted about surgeries. Anyway, here are the answers to your questions.

My mom is 57. Her cancer has not spread and the tumor was 5 cm. We live right outside of Houston and she actually started at MD Anderson. That's a whole other story there. We left because of the horrible treatment she was receiving. Now she is at The Baylor School of Medicine Breast Center which is also in the medical center of Houston.

They stopped the herceptin simply because 12 treatments was the number they said. They said 12 treatments to shrink the tumor, then surgery - lumpectomy, then chemo, then radiation, then herceptin. But when the tumor shrunk so much that it was gone, it's like they didn't know what to remove, so they decided to take the whole thing.

While getting her to treatment isn't always convenient, I have a baby and usually can't do it, it is possible.

Anyway, I hope to hear back on more ideas. She has an appointment tomorrow with the doctor and she is a nervous wreck. They simply think that she is being a difficult patient. No one can explain though how they got from lumpectomy to mastectomy.

Thanks,
Briony
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Old 03-11-2008, 01:37 PM   #6
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Is the cancer multi-focal or just one lump? This can play a big issue. This, and the fact that the cancer was close to the skin, is why Ruth had a mastectomy.

5cm is considered a large cancer (Ruth's was bigger, however) and that too may play a role in their decision. Did the MRI show any involvement of the lymph nodes?

TRS
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 03-11-2008, 02:16 PM   #7
bbscott2
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Nope, just the one lump. 5 cm is bigger, but there is nothing there now. Lymph nodes are good. I've been researching this so much today I think I'm going cross eyed.

-Briony
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Old 03-11-2008, 02:20 PM   #8
TSund
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How wonderful! Ruth was down to "miscroscopic cells" at pathology report. I guess part of the problem is that they don't know if it's a pathological response or a clinical response until after surgery, and thus you have to have the surgery in order to tell if you need surgery! Ironic at best. As far as why they are pushing the mastectomy, I don't know why he'd change. I've heard of cases where they don't know where to remove any more when no marker was put in and tumor has disappeared...

What do the docs say when pressed on "WHY"??

TRS
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 03-11-2008, 02:41 PM   #9
bbscott2
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Ha ha. This is a doctor. He conveniently avoids that answer. He doesn't have much of a why. I get the whole margin thing, but that's pretty drastic to go from a lumpectomy and then a mastectomy when the tumor SHRANK!

-Briony
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Old 03-11-2008, 03:28 PM   #10
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I am glad to hear your mother responded so well to her treatments. That is indeed great news. If she doesn't want a mastectomy then she should seek another opinion - If she ends out having a mastectomy, I know from experience that it is not a painful surgery.
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Old 03-12-2008, 07:45 AM   #11
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bb, I was in something of the same situation as your mother.... a large lump with no lymph node involvement and they chose to do chemo before surgery. I am thankful to live in the great Northwest (seattle area), where I think we have the best treatments available. I was on Adriamyacin/cytoxin for 4 rounds of chemo and then Taxotere and Herceptin for 4 rounds. I continued with herceptin for one full year. Following my 5 months of chemo, I got my lumpectomy....They couldn't find the tumor at all! My lump had originally been large, my oncologist and surgeon both said that often those quick growing large lumps respond well to chemo.

One month after I started chemo, they had shot a "marker" into my tumor site so they would be able to find the tumor site when I finished chemo.
When I had my lumpectomy, they found NO TRACES of any cancer left. They told me at the time, that had there been any traces of cancer cells, they would have then scheduled me for a mastectomy. (I think that is your answer)
I then did 33 rounds of radiation to the tumor site.

Good luck with your mother. There is life after all of this treatment. And life after treatment feels WONDERFUL!!!!

SandyR
Everett, WA
survivor since 2005!
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Old 03-12-2008, 08:18 AM   #12
Lani
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did your mother sign anything resembling permission for a clinical trial?

They do a lot of research at Baylor and perhaps that is part of the protocol in order to learn how to compare a complete clinical (nothing palpable) response/complete radiologic response (nothing on mammo,ultrasound or MRI) with a complete pathological response, which they can only tell under the microscope and only if they are sure they got the whole area which might have tumor cells.

More thinking out loud/speculation:

To remove the whole 5 cm with a >2mm or more normal margin all the way around (what they normally aim for I believe)they might believe that they would have to make a very disfiguring lumpectomy. Since they no longer know exactly where the tumor was, just its general location within the quadrant of the breast, they might need to remove more to be sure to removed where it might have been. I don't know if your mother had particularly large breasts
but that is a lot of breast tissue to remove and still leave something aesthetically acceptable to your mom. Some surgeons (especially male ones, I believe) tend to make the judgement for the patient and only present one option believing they are in more of a position than the patient to decide what procedure to have--not based on whether the tumor may come back but what the result might look like, how it may be reconstructed etc. I think it reasonable that your mom not agree to anything until she is told of all the alternatives and the pros and cons of each. They may tell you it is too close to the skin, that they hope to avoid radiation therapy (there has been controversy in the past as to whether to radiate after mastectomy--don't know the current thinking in cases with such a good response to neoadjuvant therapy)

Some surgeons have been known to think that their handiwork will be changed (shrinkage, discoloration, hardening) by radiation therapy so why not do a mastectomy, try to avoid radiation therapy and then reconstruct?

It sounds from your post, that when asked, the surgeon is willing to go either way, lumpectomy vs mastectomy--has he/she talked with the oncologist and gotten their reasons for recommending the mastectomy.

The consensus on what constitutes the best surgical treatment of breast cancer treatment is also changing all the time--just as the oncologic and radiation therapy treatments are undergoing change.

You might go into search and look up my link to the Miami Breast Cancer Conference videos a few weeks ago (I recommended several within the past 3 wks or so). I did not have time to listen to all the talks on surgical treatment, but I bet there is a lot of information there.The linke:
http://www.cancerconf.com/media/2008/wednesday.php
click on the different days of the week and peruse the different talks on surgical treatment

Hope this helps
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Old 03-12-2008, 10:48 AM   #13
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Thanks for the reply, Lani.

My biggest question is, if it had shrunk down to 1cm would they only remove 1 cm plus the margin? I mean isn't that the point of neoadjuvant chemotherapy? To shrink the tumor down so that the woman can have breast conserving surgery? So since the tumor is completely gone, they go back to cutting out the whole area? What was the point of the neoadjuvant chemo then?

I do understand that no surgery is not an option. I have spent hours on the computer researching. At this point, mom really doesn't care if she is slightly disfigured. A mastectomy and then the two reconstructive surgeries is just too much for her.

I think that in a few years, we will finally be to the point that there won't necessarily be surgery after neoadjuvant chemothereapy. Just like a few years ago there were no lumpectomies, and now there are. I have read so many reports of how surgery is not always necessary. 95% of HER2-Positive cases that have neoadjuvant chemotherapy get the cancer completely. When they go in for the surgery they find that there is no cancer yet. Just as the MRI told them. Maybe one day they will be able to believe that.

Mom had an appoinntment with the oncologist today. She came home in tears and a wreck. He really isn't listening to much of what she has to say nor is he answering her questions. He told her that she playing games with her life and that she has to have a masectomy. I'm pretty sure we have the surgeon on board for just a lumpectomy, but we will know more after that appointment.

-Briony
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Old 03-12-2008, 06:43 PM   #14
Lani
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oncologists/surgeons I have heard talk/asked questions of at meetings

Dr. Kent Osborne --great researcher, I understand he also sees patients

Dr. Jenny Chang--whom Dr Osborne introduces as the oncologist at Baylor in charge of most of the neoadjuvant trials of targetted therapies

You can hear both of them talk on the videos of the Miami BC conference I supplied the link for

Dr. Anthony Lucci --breast surgeon at MD Anderson who does research on
cox2 inhibitors and diet (walnuts, etc) and breast cancer He also has published on the costs/reimbursements of different breast surgeries and whether that influences/has influenced the trends of surgery done in this country. He is a very nice man, easy to talk to. I asked him several questions and he converses easily and explains well and seems to have a
human touch. Perhaps he could be helpful in your sorting through the disagreement between the oncologist and the surgeon at Baylor.

I have posted before that there is a trend to doing the least surgery that will answer the question/take care of the problem/ allow staging in breast cancer because 1) surgery causes inflammation and the gene expression profile of breast cancer looks very much like inflammation 2) there is a feeling that breast cancer (stem cells) in a dormant condition hide out in the bone marrow and that angiogenic substances are what awaken them like Prince Charming and Sleeping Beauty. The theory goes that the larger the surgery the more angiogenic substances are released.

3) In cases where lumps are found long before surgery, the tumor recurs/metastasizes x months after surgery (x depending on the subtype of bc) NOT x months after the lump was found, implying that something about the surgery started "the clock ticking" This has been found when fear, lack of local medical care, or other circumstances cause the surgery to be delayed long after the lump was found.

The above is theoretical, just as it is called the "stem cell THEORY" of breast cancer, but my impression from attending meetings is that more and more experts are switching to believing in the "theory"

This is not to say choosing to have a mastectomy is the wrong decision--it is just to say that there are alternatives and the right answer is not known, so it is reasonable to get second/third opinions and ask for lots of input on what the alternatives/pros & cons of each are.

If the mastectomy is being recommended to help your mom avoid radiation therapy I think consulting with the radiation therapist BEFORE rather than AFTER surgery may be in order in order to be sure it is his/her opinion that you mom wouldn't need radiation therapy ANYWAY or that it would/would not be given in a different way.

There are trials of IORT (intraoperative radiation therapy done at the time of lumpectomy as a one time treatment not requiring more after), accelerated partial breast radiation where tubes are implanted at the time of surgery and treatments take place for 5-7 days thereafter and are then over as well as external beam accelerated partial breast radiation which is done after surgery externally.

It makes sense to get all the info and make decisions and a game plan BEFORE undergoing surgery. I hope one/several of the doctors above might be able to help you with that.

Is it your mom's left breast(side the heart is on)? Doubt this would have an influence as if your mom had heart problems I doubt they would have given her herceptin.

Just a word of correction, if your mom doesn't have inflammatory bc (and even if she does) 95% is NOWHERE NEAR what the rate of complete pathological response is with neoadjuvant therapy. It would be WONDERFUL if it was!!!!

Hope some of this helped.
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Old 03-12-2008, 08:42 PM   #15
Bev
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After mom gets a second opinion, Mom needs to decide. A mast is OK in context w/ other situations. I think it is fair to ask for drug treatment to continue while researching surgical treatment. If your doc doesn't suggest tx it's his fault, if you elect to ignore suggestions, it's your fault.

My gut feeling, is she can continue to do H and live happily, ever after. uless she has heart issues.

If Docs can't give you a good enough reason for mast, refuse. Hell no, we wont go. But saying this, I could be wrong.

So search on, you are a good daughter. If we come to the wrong conclusion we were only doing the best we could with today's data It's not the end of the world to have a Mast, I just am not seeing any reason for her to have it. Bev
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Old 03-13-2008, 05:53 PM   #16
Susan McQ
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lumpectomy after chemo/herceptin

My tumor was not as large but I had chemo first. Tumor shrank to the point neither of my docs could feel it. Since mine was a 6:00, the surgeon didn't feel the need for a marker.

My surgeon is the one who pushed for chemo first to shrink the tumor. I had the lumpectomy and my final path report indicated no cancer found. A complete response to chemo is possible.

She needs to do what is best for her. Is there someone who can go to these appts with her and advocate for her?

Susan
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stage 2 er/pr-, her2+
neoadjuvant chemo 4 A/C completed April '06, 12 weekly taxol/herceptin completed 8/06, lumpectomy 8/15/06 NED!
33 rads completed 10/06
weekly herceptin thru May 2007 --Stopped herceptin 4/07 due to drop in LVEF. Started Herceptin again 5/07
Final Herceptin 6/12/07
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Old 03-13-2008, 08:24 PM   #17
daisylady2
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My tumors shrank to nothing with chemo and herceptin. They were clinically gone--nothing on the MRI or PET scan. My surgeon said there was nothing to remove and did not do surgery. After the last MRI, he told me he didn't need to see me again until my I needed surgery.
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Old 03-15-2008, 10:51 AM   #18
Lani
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hot off the press--significant association of mastectomy with lymphedema

with or without axillary node dissection and/or radiation therapy

Just one more thing to take into consideration

The Incidence of Arm Edema in Women With Breast Cancer Randomized on the National Surgical Adjuvant Breast and Bowel Project Study B-04 to Radical Mastectomy Versus Total Mastectomy and Radiotherapy Versus Total Mastectomy Alone.

Deutsch M, Land S, Begovic M, Sharif S.
National Surgical Adjuvant Breast and Bowel Project (NSABP) Operations and Biostatistical Centers, Pittsburgh, PA; University of Pittsburgh Medical Center, Department of Radiation Oncology, Pittsburgh, PA.
PURPOSE: To determine the incidence and factors associated with the development of arm edema in women who participated in the National Surgical Adjuvant Breast and Bowel Project (NSABP) study B-04. METHODS AND MATERIALS: Between 1971 and 1974, the NSABP protocol B-04 randomized 1,665 eligible patients with resectable breast cancer to either (1) the Halstead-type radical mastectomy; (2) total mastectomy and radiotherapy to the chest wall, axilla, supraclavicular region, and internal mammary nodes if by clinical examination axillary nodes were involved by tumor; and (3) for patients with a clinically uninvolved axilla, a third arm, total mastectomy alone. Measurements of the ipsilateral and contralateral arm circumferences were to be performed every 3 months. RESULTS: There was at least one recorded measurement of arm circumferences for 1,457 patients (87.5% of eligible patients). There were 674 women (46.3%) who experienced arm edema at some point during the period of follow-up until February 1976. For radical mastectomy patients, total mastectomy and radiotherapy patients, and total mastectomy patients alone, arm edema was recorded at least once in 58.1%, 38.2%, and 39.1% of patients, respectively (p < .001) and at last recorded measurement in 30.7%, 14.8%, and 15.5%, respectively (p = <.001). Increasing body mass index (BMI) also showed a statistically significant correlation with arm edema at any time (p = .001) and at last assessment (p = .005). CONCLUSIONS: Patients who undergo mastectomy, including those whose treatment plans do not include axillary dissection or postoperative radiotherapy, suffer an appreciable incidence of arm edema.
PMID: 18029105 [PubMed - as supplied by publisher]
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Old 03-15-2008, 09:27 PM   #19
Bill
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Briony, your Mom is lucky to have you. She must be an awesome mother, because it's obvious she's raised an awesome daughter. I was going to comment on technical issues, but it looks like you've done your research, and as always, Lani is here. Susan had a good point, regarding someone to go with your mom to appointments, but I know that's tough with your situation with raising young children. I think that if possible, your mom needs to consult with another doctor or two. It sounds like her needs are not being met by her doc., especially if she's coming home a nervous wreck. I mean, come on, the treatment WORKED, right? That's a good thing. It's her decision to make, after consulting with other doctors, but it seems squirrelly to me to want to remove the whole breast at this point, but I'm no doctor. Can't they just monitor the area with CT scans and other tests? This is only one case, but my wife, Nicola, had a lumpectomy and then the rad. onc., after one rad. treatment looked at her margins again and said they were too close and recommended a mastectomy. The surgeon said he didn't agree. He said, let's just go in and do another "breast biopsy?" and check the margins again. These came back clear, and Nikki didn't have the mastectomy. She never did develop any cancer in her breasts. Could your Mom maybe have another checking of margins done again? I'm praying for strength for you and your Mom, and praying that God will bring your Mom and a compassionate doctor together. Briony, (my cousin has a daughter named Briony), I know things are tough for you right now, but please realize that right here, right now, you are where you were meant to be, and I know you're doing your very best. Please take a little time out for yourself when you can. You gotta stay stong for your Mom and your little ones. Thoughts and prayers for you. Love, Bill
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