Am I at High Risk?

marshakb

Ladies, I am having quite a time of it! I would really appreciate your opinions.

Quick stats: 5.2 cm ILC tumor, right mastectomy, chemo, currently doing rads and tamoxifen. Er/PR Pos, HER/Fish Neg. Tumor was pleomorphic lobular carcinoma, Ki 42%. The pathology found another 1.5 cm LCIS in the same breast not found on mamm/ultrasound. Stage IIIA 1 of 13 axill node positive.

I asked my surgeon from the very begining about bi-lat. He thought it was drastic. He told me no rads then after I finished chemo the onc said yes you need rads. What I want is this time bomb that is ticking off my chest! 30% of lobular cancers "mirror" in the other breast. Wouldn't you ladies think I am high risk????? I cannot seem to get anyone to take me serious and I am getting pi**ed but am trying not to let them see that, just being persistant. I have 4 doctors! Anybody have any advice???????????? Thanks, Marsha

Oh, haven't had the BRCA done but am 46 years old, my grandmother and aunt have BC history. And I forgot this part: at the original mamm/us there were a couple "cycts" in the other breast. I never had a MRI put did have a PET/CT scan right after surgery that was normal. Sorry for rambling. LOL

purplemb

Marsha, I understand about the time bomb feeling..please be persistant...or even get a second opinion...
hugs I wish this were easier..but we know its not....
MB

caaclark

Marsha,

I would get another opinion. I did not have ILC but instead had IDC. When I asked about removing both breasts instead of just the side with cancer my doctor said that since I had IDC that she would not suggest that. Then she said, "But if you had ILC I would recommend taking both breasts."

JerseyGemini

I don't know why he would say it's drastic to have a bilateral. Just having breast cancer once increases your risk for having a new primary. I had a stage 1 IDC and had a bilateral with all doctor's blessings. My surgeon said I had choices and didn't have to do it but supported me. My onc said because I was so young (30) it was a good decision. You are young also and have a lot of life left to have to worry about getting a new primary. I would get another opinion or just tell your surgeon that is what you want..if that is indeed what you want.

Plus my reconstruction is even and matches and they look great :-)

Good luck!
Teresa

twink

Marsha,
My BS supported the bilat decision right from the beginnning, even though I was Dx'd with IDC. I am triple neg. and the unaffected breast did have the same dense breast tissue (increases risk) and microcalcifications. My tumor was 3.5 cm, which is on the large side. With a 5.2 cm and ILC, I would think your risk is increased. I'd find another surgeon to bounce this off - a bilat. would seem to be a 'no-brainer' if that's what you want to do. The only push-back I got was from the insurance company regarding the prophylactic mastectomy on the right breast and, even then, it was brief.

Hugs my sweet BC sister. Can't wait 'til Feb!

T

Margerie

My comfort zone was having a bilateral. My docs fully supported my decision- which was not made in haste. I had the prophylactic mastectomy 10 months after my first mastectomy and then had both reconstructed at the same time. My history is different than yours (no bc family history, tested BRCA negative, IDC, no cysts in other breast) but my main reasons were I would have had to have surgery to healthy breast for symmetry upon reconstruction, my tumor was missed on mammogram, and my young age (38) on diagnosis. My onc said I had a 1-2% cummulative risk PER year of a new primary in other breast. Other breast was fine on the pathology report.

From what I understand, ILC does cross over at a higher rate and it is sneaky and not seen on mammogram/us as well as other breast cancers.

I bet your surgeon would change his tune if it was his daughter/wife in your situation.

You just have to ask yourself- what are the risks (physically, emotionally, financially) of keeping other breast, versus the risks of additional surgery?

Wishing you well!

Pharmmom

Hi Marsha,

Sorry you are going through this! I just wanted to say that my mom had BC, and her aunt had it and I did have the genetic testing and it was negative for BRAC. There was another gene that was not identifiable and questionable. I guess all that means is they havent identified it yet. I'd get the testing. My neighbor just had BC surgery recently (a few weeks) and she did the bilateral. I don't know if she was the same as you but the surgeon did it no problem. Maybe go to another surgeon instead of trying to convince this one? Good luck to you.

marshakb

Thanks ladies for your responses. Since the docs are telling me "standard treatment" and NCCN guidelines blah, blah blah, I decided to look those things up. Man you can get anything on the interenet. LOL Look what I found from NCCN Practice Guidelines in Oncology

Women with a history of lobular carcinoma in situ (LCIS ) are also at
substantially increased risk for invasive breast cancer in both the
affected and contralateral breast, and are thus appropriate
candidates for risk reduction interventions as may be women with a
history of thoracic irradiation, especially at a young age.

Risk Reduction Interventions (BRISK-3)
Risk Reduction Surgery
Bilateral Total Mastectomy


Retrospective analyses with median follow-up periods of 13-14 years
have indicated that bilateral risk reduction mastectomy (RRM)
decreased the risk of developing breast cancer by at least 90% in
moderate- and high-risk women and in known BRCA1/2 mutation
carriers. Results from smaller prospective studies with shorter follow-up periods have provided support for concluding that RRM
provides a high degree of protection against breast cancer in women
with a BRCA1/2 mutation.
The panel supports the use of RRM for carefully selected women at
high risk of breast cancer who desire this intervention (eg, women with
a BRCA1/2, p53, or PTEN mutation, or women with a history of LCIS
or thoracic radiation,5-8,17 who have additional breast cancer risk factors
or extreme anxiety associated with the diagnosis). These women
should first have appropriate multidisciplinary consultations and a
clinical breast examination and bilateral mammogram if not performed
within the past 6 months. If results are normal, women who choose
RRM may undergo the procedure with or without immediate breast
reconstruction. Bilateral mastectomy performed for risk reduction
should involve removal of all breast tissue (ie, a total mastectomy).
Women undergoing RRM do not require an axillary lymph node
dissection unless breast cancer is identified on pathologic evaluation of
the mastectomy specimen.

Add that to the 30% chance the lobular "mirrors" in the other breast and there is no doubt I fall in these guidelines, right?

Pharmmom

I would do it if I had the type you have. I had the ductal IDS??? Anyway I only had the one side taken off. You seem to have all the evidence you need to back up your decision. I'd look for another surgeon.

MaryGLA

Marsha,

You should decide how aggressive you want your treatment to be, and then find doctors who support you. I was Stage 1 node- IDC, and when my plastic surgeon told me I would need a breast lift and small implant on the other breast for symmetry, I asked for the double. My insurance company ok'ed it, and all three doctors-plastic, general surgeon and onc were very supportive. Good luck to you. Your medical team will be with you for years, so find people you really like and trust.

Mary

Anonymous

Marsha---I was diagnosed with LCIS almost 4 years ago, had lumpectomy, take tamoxifen and am very closely monitored--SBEs, CBEs, mammos alternating with MRIs every 6 months. Also high risk due to family history. All my docs (onc, bs, gyn, pcp) felt BPMs were too drastic for my situation at the time. But after researching LCIS for nearly 4 years, I've decided if I ever develope any invasive bc, I will immediately opt for the bilateral surgery due to the bilateral risk. But we each have to decide for ourselves what we can live with comfortably.

Nickig

I was 36 at dx (in 2004) my general surgeon & rad.onc and plastic surgeon all thought my wanting bilat mast was "too radical". Well I got another opinion from someone who listened to me and understood my fears and the laws regarding breast cancer. I told them "I WANT THEM BOTH REMOVED. I DON'T WANT THE NIPPLE OR ANYTHING". We listed the pros and cons and how my life will be with them (crazy with fear) and with out them. He agreed and when he unwrapped me after surgery I looked down and said "wow" then I said "I'm still glad I did this" and he said to me "So am I. You made the right choice". So- perhaps your seeking another surgeon or telling your surgeon what you have decided you want vs want he thinks you should have will get the results you want. Be assertive. This is YOUR life. You're the boss. And many of the "statistics" the docs quote are old! (See as AWB said above "we each have to decide for ouselves what we can live with comfortabley" I agree. I was not comfortable with a lumpectomy or a single mastectomy.

Good luck to you- This is a very overwhelming time and to go around and around with these surgeons just is stressing in itself. BTW - I have all new docs. Those that were negative with me or too opinionated and non-listeners were "dismissed". (Sorry if I'm a bit harsh-just don't back down from what you really feel you should have)

Good Luck & God Bless-
Nicki

also...I was told I did not fit the "criteria" for getting the BRCA testing. No immediate history of cx. Well 3 yrs later I finally get tested...guess what? BRCA 1 positive! So, sometimes you just have to go with your gut. I should have pushed it more on the testing...but didn't. shoot.

TenderIsOurMight

Oh, I lost another post even though I copied it. I knew it, I saw the computer blink. So.. I'll just cut to the chase.

Given where the medical profession has taken breast cancer surgery, from radical mastectomy, to modified radical mastectomy, to lumpectomy and radiation (with the latter two surgeries showing equal survival benefit) and now with intra-operative ablative surgery which soon may give birth to what, a "minimalectomy" (?), it comes as no surprise that a prophylactic contra-lateral mastectomy (PCM) is seen by many as drastic.

Yet we patients have gone beyond statistics to 100% occurrence, and survival instinct rears it's head. Since there is no 100% perfect test to detect (pre)invasive cancer, and no 100% cure, a PCM which reduces your risk of opposite side breast cancer to about 99% is pretty darn good given where you have been. And yes, you are high risk. Reconstruction can be done (no 100% complication-less guarentee here either), and many women have similarly chosen the path of PCM, fully respecting those who have not.

Stay focused, and good luck to you.

Tender

Milica

Marsha, I didn't have LCIS - I had Stage one IDC. But I chose mastectomy over lumpectomy. It was my choice not my doctors.

So it's your choice. Do what makes you feel safe and secure!

marshakb

Nick

IS there laws about breast cancer? I thought there was Patient Rights but I don't know or can't find what or where they are.

Funny, if I had chosen immediate recon, the doc would have removed it with no questions asked. That really pisses me off! They will take it for symmetry but not for my health????????????

TenderIsOurMight

Marsha,
The Breast Reconstruction Act of 1998 covers some of what your asking. Here is a 2004 guideline from the American Association of Plastic Surgeons.

Also, try to medically document an area of concern in your left breast. Persistent difficult clinical palpation to discern cancer ( chronic thickness, lumpy areas). a biopsy in the mirrored area at heightened risk which may reveal atypia, or mammogram, ultrasound, MRI showing area(s) of concern would all support the breast's removal under standard surgical diagnosis in light of your history of ILC and increased risk as you've pointed out. Then reconstruction of both is covered under the Reconstruction Act of 1998. It's a little less clear if you undertake the PCM for symmetry, as reading below suggests.

BACKGROUND
For women, the function of the breast, aside from the brief periods when it
serves for lactation, is an organ of female sexual identity. The female
breast is a major component of a woman’s self image and is important to
her psychological sense of femininity and sexuality. Individuals with
abnormal breast structure(s) often suffer from a severe negative impact on
their self esteem, which may adversely affect their sense of well-being.
Breast cancer is the second most frequently occurring cancer in the United
States. Breast reconstruction after cancer treatment is the most common
reason patients seek breast reconstruction surgery. Many women find that
surgical reconstruction of the missing breast is an essential component in
their recovery from cancer.

DEFINITION: COSMETIC AND RECONSTRUCTIVE
SURGERY
For reference, the following definition of cosmetic and reconstructive
surgery was adopted by the American Medical Association, June 1989:
Cosmetic surgery is performed to reshape normal structures of the body
in order to improve the patient’s appearance and self-esteem.
Reconstructive surgery is performed on abnormal structures of the body,
caused by congenital defects, developmental abnormalities, trauma,
infection, tumors or disease. It is generally performed to improve
function, but may also be done to approximate a normal appearance.

POLICY
Breast reconstruction of the affected breast, as well as surgery on the
contralateral breast to achieve symmetry, is considered reconstructive
surgery and in accordance with the Women’s Health and Cancer Rights Act
must be a covered benefit and reimbursed by third-party payers.
Legislation: Women’s Health and Cancer Rights Act of 1998
In October 1998, federal legislation was signed into law requiring group
health plans and health issuers that provide medical and surgical benefits
with respect to mastectomy, to cover the cost of reconstructive breast
surgery for women who have undergone a mastectomy. The law states:
?
The attending physician and patient are to be consulted in
determining the appropriate type of surgery.
?
Coverage must include all stages of reconstruction of the diseased
breast, procedures to restore and achieve symmetry on the opposite
breast and the cost of prostheses and complications of mastectomy,
including lymphedema.
Group health plans and health insurance issuers offering group health
coverage may not:
?
Deny a patient eligibility, or continued eligibility, to enroll or to
renew coverage under the terms of the plan, solely for the purpose
of avoiding the requirements of the statute.
?
Penalize, reduce, or limit the reimbursement of an attending
provider.
?
Provide incentives to attending provider to induce such provider to
provide care to an individual participant or beneficiary in a
manner inconsistent with this section.
The statute extends the requirement to self-insured plans under ERISA
federal law, and preempts state laws that do not provide at least the same
level of coverage. Violations of this federal legislation may be reported to
the Department of Labor at 202-219-8776.

DIAGNOSIS CODING
Diagnosis
ICD-9
A. Malignant neoplasm of female breast
174.0 – 174.9
B. Malignant neoplasm of male breast
175.0 & 175.9
C. Personal history of malignant
neoplasm of breast
V10.3
D. Acquired absence of breast
V45.71
For surgery of the opposite breast
A. Macromastia
611.1
B. Breast Asymmetry
611.8
C. Ptosis
611.8
See ASPS
®

Recommended Insurance Coverage Criteria for Prophylactic
Mastectomy for diagnosis code V16.3, family history of malignant
neoplasm of breast.
ASPS Recommended Insurance Coverage Criteria
for Third-Party Payers
Breast Reconstruction Following Diagnosis and Treatment
for Breast Cancer

AMERICAN SOCIETY OF
PLASTIC SURGEONS
Page 2
SURGICAL TREATMENT OF BREAST CANCER
Mastectomies can be segmental, partial, complete or total (modified
radical or radical with muscle resection). Mastectomies can be indicated
for malignant, pre-malignant or in rare situations, for benign disease
processes.
Lumpectomy, also referred to as a tylectomy, is the surgical excision of a
cancerous lump along with a margin of normal breast tissue. Twenty to
30% of patients undergoing a lumpectomy will be left with breast
deformities that vary greatly depending on the type of resection, radiation
therapy, breast size and shape, and tumor location.
Reconstruction Following the Treatment of Breast Cancer
A variety of reconstruction techniques are available to accommodate a
wide range of breast deformities resulting from mastectomy or
lumpectomy. The technique(s) selected are dependent on the nature of
the defect, the patient’s individual circumstances and the surgeon’s
judgment. When developing the surgical plan, the surgeon must correct
underlying deficiencies, as well as take into consideration the goal of
achieving bilateral symmetry.
Depending on the individual patient circumstances, surgery on the
contralateral breast may be necessary to achieve symmetry. Surgical
procedures on the opposite breast may include reduction mammaplasty
and mastopexy with or without augmentation.

POSSIBLE CPT CODING
A. Mastopexy
19316
B. Reduction mammaplasty
19318
C. Mammaplasty, augmentation; without
prosthetic implant
19324
D. With prosthetic implant
19325
E. Immediate insertion of breast prosthesis following
mastopexy, mastectomy or in reconstruction
19340
F. Delayed insertion of breast prosthesis following
mastopexy, mastectomy or in reconstruction
19342
G. Nipple/areolar reconstruction
19350
H. Breast reconstruction, immediate or delayed, with
tissue expander, including subsequent expansion
19357
I. Breast reconstruction with latissimus dorsi flap,
with or without prosthetic implant
19361
J. Breast reconstruction with free flap
19364
K. Breast reconstruction with other technique
19366
L. Breast reconstruction with transverse rectus
abdominis myocutaneous flap (TRAM), single
pedicle, including closure of donor site;
19367
M. With microvascular anastomosis (supercharging)
19368
N. Breast reconstruction with transverse rectus
abdominis myocutaneous flap (TRAM), double
pedicle, including closure of donor site.
19369
O. Open periprosthetic capsulotomy, breast
19370
P. Periprosthetic capsulectomy, breast
19371
Q. Revision of reconstructed breast
19380
R. Preparation of moulage for custom breast implant
19396
S. Unlisted procedure, breast
19499



AMERICAN SOCIETY OF
PLASTIC SURGEONS www.plasticsurgery.org


SURGICAL TREATMENT OF BREAST CANCER
Mastectomies can be segmental, partial, complete or total (modified
radical or radical with muscle resection). Mastectomies can be indicated
for malignant, pre-malignant or in rare situations, for benign disease
processes.
Lumpectomy, also referred to as a tylectomy, is the surgical excision of a
cancerous lump along with a margin of normal breast tissue. Twenty to
30% of patients undergoing a lumpectomy will be left with breast
deformities that vary greatly depending on the type of resection, radiation
therapy, breast size and shape, and tumor location.
Reconstruction Following the Treatment of Breast Cancer
A variety of reconstruction techniques are available to accommodate a
wide range of breast deformities resulting from mastectomy or
lumpectomy. The technique(s) selected are dependent on the nature of
the defect, the patient’s individual circumstances and the surgeon’s
judgment. When developing the surgical plan, the surgeon must correct
underlying deficiencies, as well as take into consideration the goal of
achieving bilateral symmetry.
Depending on the individual patient circumstances, surgery on the
contralateral breast may be necessary to achieve symmetry. Surgical
procedures on the opposite breast may include reduction mammaplasty
and mastopexy with or without augmentation.

Lastly, check your individual state law on superseding or augmenting this Act.

Hope this helps,
Tender

marshakb

Ahhhhhh thanks Tender and everyone else. I get it now. I got caught with my panties down, no health insurance and am having my treatments, etc covered by a a state program for under insured people who can't get government help (medicaid, care etc). I guess I am not entitled to the same choices as someone with insurance is. Guess my next question to the docs is "are you saying no since I have not health insurance?"

Dang...........the thing is, I can never get the other breast insured now that it is pre-existing. Will be paying for scans etc out of pocket. And now adding that to my list of worries. I hate this disease. Reading about the breast and sexual organ bull crap makes me want to cry. I don't find my uni-boob feeling much like a sex organ to be honest. Geez..............

Marsha

scarednancy

Hi Marsha,
I was dx with pleomorphic lobular carcinoma in October 06. My tumor was 1.1 cm. My surgeon insisted that I have MRI's done on both breasts prior to surgery so that she would not have any surprises. Fortunately, I didn't have anything in the right breast so she performed a lumpectomy and SNB which resulted in clean margins and clear nodes. I have talked with her on numerous occasions about ILC being sneaky and she said that she would keep a close eye on me and that having a masectomy on either breasts would not be necessary at this time. I had 33 rad treatments and am on Tamoxifen. I also had the OncotypeDX test done which gave me a chance of reoccurance in the next 10 years of 6% since I scored a 9. I'm sorry you are going through this mess and hope things work out for you. Good luck!
Nancy

marshakb

Nancy,

I am soooo glad yours was caught early! Sounds like 94% for you on no reoccurance and I would love to have that number! The bilat would give me about 95-99% chance of not ever having to worry with this ever again! (other than mets of course, A whole different ballgame) Did that 1.1 cm show up on mamm/ultrasound? That is what scares me the most since the 1.5 cm didn't. Of course the 5 cm one did, kinda hard to miss that, especially in my little B Cup LOL

All of you gals are fabulous and I so appreciate the time you took to post to me.

TenderIsOurMight

Marsha,

Why don't you check within your state for a) special state health programs for those lacking insurance: you still might qualify for help if things get documented b) advocacy groups like YMe, local breast cancer foundations, many of whom have raised money to help women women in your type of situation.

You seem so determined and confident that I believe you might be successful at finding a local resource to help you succeed at your mission.

Tender

Milica

Insurance Coverage - State Laws

Insurance Coverage is Required for Post-Mastectomy Breast Reconstruction if Mastectomy is Covered.

Alaska: enacted in 2000; conforms state law to the federal standards. The bill directly refers to the specific federal requirement: (A health care insurer that offers, issues for delivery, delivers, or renews in this state a health care insurance plan providing medical and surgical benefits for mastectomies shall comply with 42 U.S.C. 300gg-6 and 42 U.S.C. 300gg-52 regarding coverage for reconstructive surgery following mastectomies).

Arizona: enacted in 2000; conforms state law to the federal standards. The bill directly refers to the specific federal requirement: (A health care insurer that offers, issues for delivery, delivers, or renews in this state a health care insurance plan providing medical and surgical benefits for mastectomies shall comply with 42 U.S.C. 300gg-6 and 42 U.S.C. 300gg-52 regarding coverage for reconstructive surgery following mastectomies).

Arkansas: enacted in 1997; covers prosthetic devices and reconstructive surgery.

California: enacted in 1978; covers prosthetic devices or reconstructive surgery incident to mastectomy, including restoring symmetry; law was amended in 1991 to include coverage for pre-1980 mastectomies.

Connecticut: enacted in 1987; covers at least a yearly benefit of $500 for reconstructive surgery, $300 for prosthesis, and $300 for surgical removal of each breast due to tumor.

Delaware: enacted 2001; covers all stages of breast reconstruction including surgery and reconstruction of the opposite breast to produce symmetry; includes language stating surgery shall be provided in a manner determined in consultation with the attending physician.

Florida: enacted in 1987; covers initial prosthetic device and reconstructive surgery incident to mastectomy; 1997 amendment states that the surgery must be in a manner chosen by the treating physician, and surgery to reestablish symmetry is covered.

Illinois: initially enacted in 1980; covers initial prosthetic device and reconstructive surgery incident to post-1981 mastectomies. New bill enacted 2001 brings state into Federal compliance with federal requirements of the 1998 Womens' Health and Cancer Rights Act

Indiana: enacted in 1997; covers prosthetic devices and all stages of reconstructive surgery, in the manner determined by the attending physician and patient, including reconstruction of the other breast to produce symmetry. Additional legislation enacted in 2002 requires coverage for post-mastectomy services regardless of whether the individual was covered under the policy at the time of the mastectomy.

Kansas: enacted in 1999; covers breast reconstruction, including surgery of the other breast to produce a symmetrical appearance, prostheses and physical complications, in a manner determined in consultation with the attending physician and the patient.

Kentucky: enacted in 1998; covers all stages of breast reconstruction surgery following a mastectomy that resulted from breast cancer. 2002 amendment conforms statute to federal law

Louisiana: enacted in 1997; covers reconstructive surgery following a mastectomy, including reconstruction of the other breast to produce a symmetrical appearance, as agreed by the patient and attending physician. 1999 amendment conforms statute to federal law.

Maine: enacted in 1995; covers both breast on which surgery was performed and the other breast if patient elects reconstruction, in the manner chosen by the patient and physician.

Maryland: enacted in 1996; requires coverage for reconstructive surgery resulting from a mastectomy, including surgery performed on a non-diseased breast to establish symmetry.

Michigan: enacted in 1989; covers breast cancer rehabilitative services, delivered on an inpatient or outpatient basis, including reconstructive plastic surgery and physical therapy.

Minnesota: enacted in 1980; covers all reconstructive surgery incidental to or following injury, sickness or other diseases of the involved part, or congenital defect for a child. Additional legislation enacted in April 2002 expands language to specifically include benefits for all stages of reconstruction following mastectomy consistent with federal law. Also specifies that limitations on reconstructive surgery do not apply to reconstructive breast surgery following medically necessary mastectomy.

Missouri: enacted in 1997; covers prosthetic devices and reconstructive surgery necessary to achieve symmetry, as recommended by the oncologist or primary care physician.

Montana: enacted in 1997; covers reconstructive surgery following a mastectomy resulting from breast cancer, including all stages of one reconstructive surgery on the non-diseased breast to establish symmetry, and costs of any prostheses.

Nebraska: enacted in March 2000; follows the example of the federal statute by requiring coverage for medical and surgical benefits for mastectomy and for all stages of reconstruction of the breast after a mastectomy has been performed and reconstruction of the other breast to produce a symmetrical appearance. The measure also requires coverage for prostheses and physical complications of mastectomy.

Nevada: enacted in 1983; covers at least two prosthetic devices and reconstructive surgery incident to mastectomy. The law was amended in 1989 to cover surgery to reestablish symmetry.

New Hampshire: enacted in 1997; covers breast reconstruction, including surgery and reconstruction of the other breast to produce a symmetrical appearance, in the manner chosen by the patient and physician.

New Jersey: enacted in 1985; covers reconstructive breast surgery, including cost of prostheses. The law was amended in 1997 to extend coverage to reconstructive surgery to achieve and restore symmetry.

New York: enacted in 1997: covers breast reconstruction following mastectomy, including reconstruction on a healthy breast required to achieve reasonable symmetry, in the manner determined by the attending physician and the patient to be appropriate.

N. Carolina: enacted in 1997; covers for reconstructive breast surgery, including all stages and revisions of surgery performed on a non-diseased breast to establish symmetry, and reconstruction of the nipple/areolar complex without regard to the lapse of time between mastectomy and reconstruction. (1999 amendment conforms statute to federal law: Not Carried Over to 1999 General Assembly Second Session.)

N. Dakota: enacted 2001; specifies that health insurance policies may not be issued or renewed in the state unless they provide the benefit provisions of the 1998 Federal Womens' Health and Cancer Rights Act.

Oklahoma: enacted in 1997; covers reconstructive breast surgery performed as a result of a partial or total mastectomy, including all stages of reconstructive surgery performed within 2 years on a non-diseased breast to establish symmetry.

Pennsylvania: enacted in 1997; covers prosthetic devices and breast reconstruction, including surgery on the opposite breast to achieve symmetry, within six years of the mastectomy date. Additional legislation enacted 2002 adds language consistent with federal law.

Rhode Island: enacted in 1996; covers prosthetic devices and reconstructive surgery to restore and achieve symmetry incident to a mastectomy. Surgery must be performed within 18 months of the original mastectomy.

S. Carolina: enacted in 1998; covers prosthetic devices and breast reconstruction, including the non-diseased breast, if determined medically necessary by the patient and attending physician with the approval of the insurer.

Tennessee: enacted in 1997; covers all stages of reconstruction for the diseased breast, excluding lumpectomy, and procedures to restore and achieve symmetry between the breasts, in the manner chosen by the patient and physician, within 5 years of the reconstructive surgery on the diseased breast.

Texas: enacted in 1997; covers reconstruction of the breast incident to mastectomy, including procedures to restore and achieve symmetry, for contracts delivered, issued for delivery or renewed on or after Jan. 1, 1998. 1999 amendment conforms statute to federal law.

Utah: enacted in 2000; follows the example of the federal statute by requiring coverage for medical and surgical benefits for mastectomy and for all stages of reconstruction of the breast after a mastectomy has been performed and reconstruction of the other breast to produce a symmetrical appearance. The measure also requires coverage for prostheses and physical complications of mastectomy.

Virginia: enacted in 1998; covers reconstructive breast surgery performed coincident with a mastectomy performed for breast cancer or following the mastectomy, and surgery performed to reestablish symmetry between the two breasts.

Washington: enacted in 1985; covers reconstructive breast surgery if mastectomy resulted from disease, illness or injury. The law was amended in 1996 to include surgery to reestablish symmetry.

West Virginia: Enacted 2002, includes coverage for reconstruction of the breast on which mastectomy was performed and the opposite breast for symmetry; also provides coverage for prosthesis and complications all as determined in consultation with attending physician and patient.

Wisconsin: enacted in 1997; covers breast reconstruction of the affected tissue incident to mastectomy and specifies that such surgery is not considered cosmetic.

marshakb

Thanks for the info, problem is it doesn't apply to me. I don't have health insurance. the program I was approved for to cover surg and treatment does not cover recon. I need to have the bi-lat called necessary.

marshakb

Well, got a call from my surgeons office yesterday. He got an order from my onc for left breast and port removal. They called to say the surgeon will do the port removal but not the mastectomy. When I asked why she said the surgeon didn't think there is justification for it. WTH?? I am sick, didn't sleep a wink last night. I don't know what to do as this is the surgeon who is in the program I was approved for to handle my treatments. I don't have the money or insurance to pay for it out of pocket. Geez......... sorry for the rant and the self-pity party. Marsha

Emelee26

Marsha,
I'm so sorry - that's really upsetting..don't be sorry - you deserve to feel mad. Is there another surgeon in the area that can be approved? Maybe if you got the genetic testing, he would have no choice....at the very least you can meet with the geneticist to see what your % is and then call the surgeon with that % risk. Hugs for you...

Nickig

That is just unbeleiveable to me. I would be livid. I would definately try to find another surgeon. As someone else suggested here, what about Y-ME? or YSC or ACS. Can anyone rally for you or give you leads on how to handle this? To me this Dr. of yours is expressing his "OWN" belief about what you "should" do. That does not seem ethical to me...Sorry but even your oncologist ordered the removal of the other breast. I would appeal your surgeons "thinking its not necessary". Where is his PROOF of it not necessary? His thoughts are speculative and his own. There is nothing definitive. Ask your ocologist to order a breast MRI so you can at least see what the other lumps in your breast are? Maybe that will help?

ugh, good luck to you. Wishing you strength and courage to fight a little harder to win your battle.
My thoughts are with you...(sorry again, if my thoughts are too harsh or naive)

Nicki

marshakb

The order went from my oncologist to the program representative and from there to the surgeon. I actually had to sign forms for the program agreeing to have it done. They sent it over to him with the referrel from my onc. He is making the call that it is not "justified". Now the order also read "port removal" and he is willing to do that. So he will do another surgery on me through this program, just not the mastectomy. The program does not cover cosmetic, but this is not cosmetic.

The rad onc today told me the doctors and hospitals who participate in this program are not paid for their services but do enjoy a HUGE tax right off. (billed at 100% retail)

TenderIsOurMight

Ok Marsha,

You are at the proverbial fork in the road.

Fork One: you persevere and get your desired prophylactic contralateral mastectomy. You reason with your surgeon that:

a. Your right mastectomy revealed pleomorphic invasive lobular breast cancer with one lymph node. Because it was pleomorphic, it is more aggressive in tendency than regular invasive lobular, perhaps leading to the one node involvement, which required systemic therapy AND, in spite of only one node, radiation at the advice of your oncologist. You remind him that disease in the node drops your survival rate. You remind him that such situations are associated with a 30 % lifetime contralateral risk, and you demand that he perform a couple of things: 1) consider a mirror image biopsy (kind of old fashioned, but perhaps where the money is) and 2) preceding the biopsy so as not to distort things, the golden MRI, known to be better than US and Mammogram, but which does give high false positive findings, so you end up with biopsies on these to make sure they are negative. This you say is the minimum which must be done given your history of pleomorphic lobular invasive node positive breast cancer. And you look him straight in the eye, unblinking, but nicely when you say it. Have the nurse in the room to witness you saying it and a family member if possible. This shifts the weight to real facts of what's happened and what statistically is possible.

b)if the surgeon says no to these tests, you ask to speak to his hospital's tumor board, and you go in with your oncologist and you make your case. And you remind them, you don't want to be looking back down the retrospectoscope several years hence, as you already have had and been treated for invasive lobular cancer which managed to spread to your node. Be tough, gather your pathology reports, get some present day literature, and hope your oncologist will speak up for you. And say you accept the surgical risk, and will work out a payment plan. Then go to the women's group, of the hospital, cancer societies, foundations and request grant money, or low interest rate loans. Tell them your plight. Press on. When there's a will there is a way. But document something objective if possible by biopsy, even prelobular, or atypical lobular in the contralateral breast because then you are covered for reconstruction.

Fork two: Stems from the doctors judgement, I presume, that taking Tamoxifen or antihormone, lowers your risk of invasive cancer in the contralateral breast by about half, 46% I believe and that you have had chemotherapy already. Tamoxifen can at least be done in the short term, to tie you over while you keep on with your plan to have a PCM, get the funding, have the tests and biopsies. But remind your surgeon this isn't enough, and you don't want to get caught with invasive cancer a second time, potentially demanding additional chemotherapy and further potential damage to your nerves and heart, and that you are making that clear. Put it in writing and send it certified to his office. He is assigned to deal with you, and he ethically and medically must. Just keep it as matter of fact in being dealt with as possible.

Two forks, one taken. Both not what you were wishing, I mean, loosing another breast takes a great amount of thought, courage, stamina. Make sure you do the work necessary to know that you truly wish this procedure. You didn't wish your first cancer on you, and you have every right to ensure you do your best in your high risk circumstances not to have a second cancer situation. You do not walk this fork in the road alone: many have proceeded you and others will follow.

Sorry for your troubles, Marsha.
Tender

wallycat

If your oncologist is OK with your Proph mast., can THEY recommend a surgeon who they trust and WOULD do the surgery?
I can understand these docs thinking "they" wouldn't do it, but they have no right to tell you what you are supposed to do with your body.
I just cannot believe this is happening to you.
I am very loud and aggressive..if you want me to contact anyone on your behalf, I would be happy to poke my nose in this business and be a squeaky wheel for you!

Best to you!
p.s. can you point out to them that one mastectomy will save them MILLIONS over the course of 6 month follow ups for one boob???!!!!! Maybe they just need to see this in dollar signs.

gracejon

Marsha, you do seem to write well. After having a rotten time getting reconstructed in the manner I desired, I wrote a scathing letter about physician opinion and failure of treatment. I said since insurance company is making this decision with their staff of physicians, lawyers and nurses, they would in my mind hold the same liability that the surgeon that did the surgery in network and I would use all legal aid at my disposal to make sure they were held liable. If you have any legal friends, a well placed letter pleading your case to the surgeon could be considered along with published papers on contralateral breast recurrence with your type tumor, in your age group etc. If the surgeon is a betting man, he may continue his stand of no mastectomy. If he has incurred liability in the past, he may agree to do the mastectomy. Although he may not like this approach, being friends once all is said and done is not necessary either. I also was very vocal to all and anyone who listened about the names of those giving me a hard time. I am not sure what was effective to change minds but in the end I got what I had set out to accomplish. Good Luck!