Need Info!

JustMe · 07-03-2010, 06:11 PM

Hi, I'm new here and am finding myself at a crossroads in my Tx. I'm hoping you ladies can provide enough info to help in my decision making.

I am 46 y/o and triple positive. 2/12 nodes were positive, Stage 11b, Grade 2. Had lumpectomy in Dec 09 and am due for my last TCH Tx on Monday and will continue with herceptin for a year.

When I found out my path report, I became uneasy that I had a lumpectomy done.

I've spoken to my family Dr. and explained why I wanted a blm - to reduce the risk of local recurrence in the affected breast as well as reduce the risk of new cancers in the affected breast. I know they cannot remove ALL the breast tissue, but it will make a difference.
Apparently I have a 40% chance of recurrence had I had no tx. FD sent a referral to my surgeon, to which I have not heard from yet.

I met with the Rad Onc yesterday, and discussed tx with him. My Onc said I needed to meet with him and make that decision or decide if I wanted only the nodes done because I am planning on BLM.

I signed the consent form as the Rad Onc recommended I have the nodes done at the very least. I understand that, and he is going to do the supraclavicular nodes as well. But, he states there is no difference in having a lumpectomy w rads vs. a BLM.

I think there is a difference. I saw my onc briefly afterward and one of the questions she asked me was, 'what about the other breast?' She's stated I am high risk at our very first appt.

So - if you've made it this far - you're a saint! I think if recurrence rate is higher, then it stands to reason that mets from recurrence will be too. What do you think?

When I talked to my onc about what the rad onc said, she's basically willing to go along with that also, stating it's 'standard'.

Basically, it wouldn't change any of the tx I have to receive, including chemo, herceptin, tamoxifen. But, it would reduce the risk of local recurrence/new cancers.

I know the ladies here are very informed, and am looking for more information regarding this, and no one can make this decision for me. Any info is gladly appreciated.

Thanks

CoolBreeze · 07-03-2010, 06:30 PM

Hi Just me!

Statistically, there is no difference between lumpectomy and radiation and mastectomy. Survival rates are the same. It's been shown in many studies. Here is one:

http://www.rsny.org/200_PDFs/GSL-A-N...ER-MASTECT.pdf

I am also very high risk. I had a 3.4 centimeter main tumor, and multi-centric, multi-focal disease, with three independent invasive cancers, plus a 4.5 cm area of DCIS. I desperately wanted a lumpectomy but because the cancer was spread throughout my breast, I couldn't have one.

I did opt to keep my left breast. I think so many women opt for a double mx that it has become the norm with doctors to suggest removal of them both. My doctor seemed very surprised that I wanted to keep one.

But, my way of thinking was I had one healthy one and I didn't want to lose complete feeling across my chest, so I didn't want to remove a healthy body part. The odds of having a new cancer on the other side are very low.

Many women do choose to remove both. Some can't stand the uncertainty of wondering if it will come back in their other breast, and as long as you know they can never remove all breast tissue and it can recur in scar tissue, then removing both is a consideration if it will give you peace of mind.

Some women choose to remove both because their reconstruction options are better. That's a very legitimate reason - being a uni makes it much harder for me to get a good cosmetic result but that wasn't my main goal.

I wanted to be able to hug a child to my real breast, have intimacy with my husband, etc. I'm glad I made that choice because my mastectomy side is numb from cleavage to the scapula.

Good luck to you. Make sure you do your research before you make decisions because regrets are very hard.

Patb · 07-03-2010, 07:59 PM

Hi
There is no correct answer to this. I made the decision
four years ago to have a lumpectomy, radiation, chemo,
and herceptin and so far so good. They told me at the
time it would be almost the same odds as masectomy.
I feel I made the right decision but I did not doubt my
decision which it sounds like you do. I wish you the best
with whatever decision you make. Take care.
patb

Gerri · 07-03-2010, 08:11 PM

Hi Just Me,

I agree with Cool Breeze (great response and informative link!). Choosing a mastectomy vs lumpectomy is a very personal decision. You need to make an informed decision and not let fear be your guide. I had a lumpectomy plus radiation and am happy I made that choice. My surgeon let me make up my own mind but told me that you can't go back when you choose mastectomy, but will have that option if needed later on. As long as you have clear margins with a lumpectomy the risk of local recurrence is very small.

I'm sure both camps will weigh in so you will hear pros and cons for both options. It seems like most of us are happy with the choice we made so you have to go with what gives you peace of mind.

Best of luck as you make your decision.

Becky · 07-03-2010, 09:09 PM

I too had lumpectomy with radiation. There is no difference in local or distant recurrence rates with masectomy versus lumpectomy with radiation.

Cal-Gal · 07-03-2010, 09:53 PM

Again-this is a personal decision, and one only you can make.

I opted for a BLM-and it was the right decision for me, and I have not spent one moment or even one day even second guessing that decision.

Once the surgical pathology came back it validated my decision-in the breast w bc-the cancer and DCIS was so large that it barely made margins with the mastectomy--and as for the so called good breast--it was precancerous--

So as the other ladies have already said--this one is up to you--

Good Luck!!!

tricia keegan · 07-04-2010, 10:01 AM

I m highly triple positive also and went for the lumpectomy with rads and at five years out this week, so far so good.

I had understood the survival rates were the same with each of these treatments, but had thought the risk of local recurrance was higher with a lumpectomy but pleased to see Becky's reply and know I was mistaken

Good luck with your decision!

Rich66 · 07-04-2010, 11:39 AM

One thought is that nodal involvement ups the risk for distant mets...the biggest concern. Significant surgery may release tumor cells into the system and anesthesia may suppress the immune system and trigger undesirable responses to any circulating cells there. Additional prophylactic major surgery at this point might only add issues. Seems like the science is recently going from neutral to tilting away from BLM. Do you have dense breasts with a history of cysts or precancerous signs? I would add that you might ask about getting an estradiol level test and ask about taking an aromatase inhibitor(if post meno) with the Herceptin. You may be able to take both during radiation, if you go that route.

JustMe · 07-04-2010, 06:59 PM

Rich 66 - I do have very dense breasts, they've always been like that. My mother hasn't had bc and I have no sisters. However, my 1st cousin was diagnosed when she was 32 and I am pre-menopausal with no hx of cysts in the breasts. However, I've also had a few rounds with cervical ca about 10 yrs. ago. And I know I've had ovarian cysts because I had 3 show up on ultrasound during the cervical ca.

Lien · 07-04-2010, 01:42 PM

Hi

I had a lumpectomy and was told the risk of recurrence was similar to BLM, so I feel okay about that. If you have a lumpectomy, you need rads to kill any residual cancer cells. If you had chemo, it probably caught any circulating cancer cells as well. So scientifically speaking you have an optimal chance of surviving this disease. Rich has a point about the effect a new (major) surgery could have on your system and its ability to fight cancer.

One important question is: how do you feel about your treatment? Do you trust your doctors? Are you convinced they are the best in your area? Do you feel safe with them?

Perhaps a second opinion from a major breast cancer centre would help you make up your mind. Are there plans for hormonal tx? If so, which type? Are you premenopausal or not?

The 40% risk of recurrence would be without any further treatment, but you are getting chemo and herceptin, so your odds are much better than that. Did they use Adjuvant Online to calculate that risk? It doesn't take Her2 positivity or Herceptin tx into account.

I think you need to talk to some experts here. Experts on Her2 positive disease, and experts on breast cancer in general. Then you can make an educated decision. Until then, please keep writing to us, so we can help you deal with what's going on.

Hugs

Jacqueline

JustMe · 07-04-2010, 06:48 PM

They also said it was a 40% risk of recurrence without any further tx after sx. I believe both doctors are wonderful but the advice seems to be conflicting. Adding to that, I've been extremely anxious about rads and am starting to lean toward the blm again. I can't seem to make a final decision. I also think my goal should be to be very aggressive in tx in order to beat this beast for once and for all.

But, I didn't know anything about major surgery having an effect on remaining breast cancer cells. Thank you ladies for stating that!! Would you, by chance, have any links for info on that?

I'm going to go and use Adjuvant Online to look for myself. Not sure if they used it or not, but the rad onc said he'd be reducing my risk of another 25% by having the breast rads.

Duke University did a second opinion for me, and said the same, 40% with no further tx. Herceptin for 30-50%, chemo for 20-30%, and tamoxifen for 50%.

So yea...I'm kind of cramming here again ladies and am so thankful for the help you're giving me!

JustMe · 07-04-2010, 06:55 PM

Crap - the adjuvant online site is down!

CoolBreeze · 07-04-2010, 02:53 PM

Lien wrote:

Quote:

Did they use Adjuvant Online to calculate that risk? It doesn't take Her2 positivity or Herceptin tx into account.

There is a new version out that does:

https://www.newadjuvant.com/default2.aspx

Rich66 · 07-04-2010, 10:39 PM

Hmmm...
Has anyone suggested the cervical ca is any sort of factor?

Although surgery and ablations can have great benefits outweighing the downsides, I wonder whether preventative surgeries are worth it.

Although it will be considered "hypothesis generating" by most docs, here are links to what I was referring to:

Opioids/anesthetic

Antimitotic concerns with mention of surgery cell release/response.

And this:

Breast. 2009 Oct;18 Suppl 3:S93-5.
Should the use of contralateral prophylactic mastectomy be increasing as it is?

Wood WC.
Winship Cancer Institute, Emory University, 1365C Clifton Road NE, Atlanta, GA 30322, USA. wwood@emory.edu
Abstract

Recent studies have shown a dramatic increase in the use of contralateral prophylactic mastectomy (CPM). The choice of surgical procedure is primarily influenced by the recommendations of physicians and surgeons. As smaller breast cancers are detected by improved breast screening, and larger breast cancers are reduced in size by neo-adjuvant chemo- and endocrine therapy, breast conservation therapy (BCT) has been applicable to more women. No one would advocate CPM with the breast primary was to be treated by BCT. This makes the more than doubling of the rate of CPM even harder to understand. The ability to better define inherited breast cancer risk by genetic analysis of BRCA1 or 2 mutations does identify a group of patients at greatly increased lifetime risk of contralateral breast cancer (CBC). This segment of the population does not account for the sharp increase in CPM. It appears that many physicians and surgeons believe the risk of contralateral breast cancer to be sufficiently high to justify advising CPM. This risk is often overestimated by both healthcare providers and patients. The case for additional surgery should involve considerations of risk versus benefit, mortality being the principal patient concern and morbidity secondary. Yet there is some morbidity in adding a second mastectomy, and no evidence of mortality benefit. Invasive lobular carcinoma is considered by some physicians to represent an increased risk of contralateral cancer, but that has not proved to be correct. Women with lobular carcinoma in situ or atypical ductal hyperplasia found at the time of their cancer diagnosis are sometimes advised to consider CPM. Treatment with tamoxifen has shown a 50-75% reduction in risk from these tissue findings. Chemotherapy for the primary breast cancer also lowers contralateral risk by about 20%. Symmetry is another reason some have recommended CPM. Reduction can be performed rather than mastectomy, if required. The use of skin-sparing mastectomy has greatly reduced the incidence of any surgery needed for symmetry on the contralateral breast. MRI used to "stage the breast" can raise questions by noting small foci of enhancement in the contralateral breast. Some women elect CPM rather than biopsy or further imaging of the contralateral breast. The case can be made that CPM should be on the decline. Its increase raises questions of the awareness of breast oncologists, medical and surgical, of the true risk data.

PMID: 19914552 [PubMed - indexed for MEDLINE]

This is in mice but....

Clin Cancer Res. 2009 Apr 15;15(8):2695-702. Epub 2009 Apr 7.
Surgical stress promotes tumor growth in ovarian carcinoma.

Lee JW, Shahzad MM, Lin YG, Armaiz-Pena G, Mangala LS, Han HD, Kim HS, Nam EJ, Jennings NB, Halder J, Nick AM, Stone RL, Lu C, Lutgendorf SK, Cole SW, Lokshin AE, Sood AK.
Department of Gynecologic Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, TX 77030, USA.

Abstract

PURPOSE: Surgical stress has been suggested to facilitate the growth of preexisting micrometastases as well as small residual tumor postoperatively. The purpose of this study was to examine the effects of surgical stress on ovarian cancer growth and to determine underlying mechanisms responsible for increased growth. EXPERIMENTAL DESIGN: To mimic the effects of surgery, we did a laparotomy or mastectomy under isoflurane inhalation on athymic nude mice 4 days after i.p. tumor cell injection. Propranolol infusion via Alzet pumps was used to block the influence of sympathetic nervous system activation by surgical stress. RESULTS: In both HeyA8 and SKOV3ip1 models, the mice in the laparotomy and mastectomy groups had significantly greater tumor weight (P < 0.05) and nodules (P < 0.05) compared with anesthesia only controls. There was no increase in tumor weight following surgery in the beta-adrenergic receptor-negative RMG-II model. Propranolol completely blocked the effects of surgical stress on tumor growth, indicating a critical role for beta-adrenergic receptor signaling in mediating the effects of surgical stress on tumor growth. In the HeyA8 and SKOV3ip1 models, surgery significantly increased microvessel density (CD31) and vascular endothelial growth factor expression, which were blocked by propranolol treatment. CONCLUSION: These results indicate that surgical stress could enhance tumor growth and angiogenesis, and beta-blockade might be effective in preventing such effects.

PMID: 19351748 [PubMed - indexed for MEDLINE]PMCID: PMC2746852Free PMC Article

Jackie07 · 07-05-2010, 05:58 PM

Just me,

My surgeon had talked me out of having mastectomy in 2003 for my 1.2 cm Her2+++ breast cancer. She cited the same statistics shown here. However, she had missed some cancer cells and all the doctors had missed the signs of my recurrence. I ended up not finding it (by myself) until it was already over 2.5 cm. It ruined my new teaching career and forced me to file for disability... (I'd also had two brain [tumor] surgeries prior to breast cancer.)

Every doctor is different. So it is really up to the patients. [Wished I had known that] My surgeon also claimed that it would not have made any difference had I had mastectomy back in 2003. Personally I know that if I had insisted on mastectomy and Herceptin back in 2003, I would still be working full-time somewhere, somehow...

JustMe · 07-08-2010, 03:51 PM

Hi again,

I am just wondering if someone would run things through the adjvunt online (sp?) for me.... I've tried getting on there but apparently they are updating.

The info is: 46 y/o, ER(100%), PR(50%), and HER2+++. 2/12 nodes, no evidence of vascular invasion. Grade 2, Stage 2b. 2.1cm with extensive DCIS. Clear margins.

6 cycles TCH and will continue herceptin for the year. Also, I wonder if this tool can be run with radiation vs. BLM?

I'd really like to see the numbers for this - thank you ladies!