Please submit only once, then click "reload page" to see the updated board. Thank you.

Reload Page Post Message Message Board Search FAQ

Posted by Betsy Mullen on 8/17/2000 from 152.163.194.191:

In reply to: Breast Cancer and Multiple Sclerosis posted by Kathi on 8/16/2000 from 152.163.213.68:

Dear Kathi:

As I was replying to your message last night, so was our Vice President, Shelly Blechman. My computer crashed before I could post my reply and when I got the computer running again, Shelly’s message was posted! She and I touched base regarding your case last night, and her posted response was very similar to the feedback I wanted to give you. As I was finishing this message and preparing to post it, I read your reply to Shelly’s message. I can, to a very large degree empathize with what you are going through, Kathi. I am an eight-year breast cancer survivor, and someone very near and dear to me has been struggling to get a definitive MS diagnosis (also the relapse/remitting form). I completely understand your desire for privacy. I too had to struggle to receive the appropriate care from my HMO, a struggle that should not have to take place particularly when dealing with the challenges of breast cancer.

We are very committed to helping you through this, Kathi. We worked very closely with Senator Lieberman’s office just last month as we pushed to secure the Breast Cancer Research Stamp reenactment legislation. The Senator and his staff are incredible. We will be happy to contact them on your behalf to brief them on your case.

Although we are not health care providers, I agree with Shelly in questioning why your surgeon is suggesting skipping a biopsy all together and going straight for a prophylactic mastectomy. Is a breast ultrasound a viable option for you? We have in-depth information on breast cancer diagnosis and treatment options in the BREAST CANCER BASICS section of this site.

Your follow-up message is very helpful in providing additional clarification. Lobular breast cancer is very challenging and I can see where your healthcare team is coming from.

Kathi, your questions are all valid and relevant. Lobular breast cancer is one type of breast cancer where the discussion and option of a prophylactic mastectomy is absolutely appropriate, even with the noninfiltrating Lobular Carcinoma In Situ (LCIS).

It appears to me that your HMO is denying you a current standard of care and that is unacceptable. Who is your HMO and at what level have you or your health care team been dealing with them? Please let us know. It sounds as though you have a great physician who is going to bat for you and with the prestige and clout of Yale behind you, I hope that your HMO wakes up, and makes the right decision to approve the care that you request and deserve.

The Chairman of our Board (WIN Against Breast Cancer) works with the national offices of the MS Society, so perhaps we can also call upon Gary to make some telephone calls on your behalf. I would venture to say that there are indeed several other women with MS who have also received a breast cancer diagnosis. We will do our best to see if we can find a patient that matches your profile and is or was on Avonex therapy.

The following is some basic information on breast cancer screening and diagnostics:

BREAST CANCER SCREENING AND DIAGNOSITCS*

Q: What is the difference between a screening and a diagnostic mammogram?

A screening mammogram is an examination using low dose X-rays to evaluate the breast for potential abnormalities, and it provides a general overview of the breasts. A screening mammogram is not intended to diagnose cancer but rather screen out patients who will require additional evaluation in the search for potential breast cancer. If a questionable abnormality is detected on the screening examination, then a more detailed diagnostic mammogram is required. The diagnostic mammogram is performed using special X-ray views (i.e., magnification, spot compression, etc.) that allow a detailed evaluation of the region of interest. Approximately 10% will be recalled after the screening mammogram for additional diagnostic evaluation.


Q: Why is ultrasound performed in addition to mammography?

Ultrasound is an excellent adjunctive examination to mammography, but it cannot be a substitute for the screening mammogram. As noted above, ultrasound is the primary examination in young, pregnant, or lactating women with palpable abnormalities. It is also routinely performed on women with clinical findings whose mammograms are unrevealing and on those whose mammograms show an area that requires further evaluation. Ultrasound is also used to guide interventional procedures, such as needle localization, fine needle aspiration, core biopsy, and percutaneous ductography.

A reliable aid in the diagnoses of most breast cysts, ultrasound can be used to guide benign cyst puncture for those who are symptomatic or do not meet stringent criteria for diagnosis of a benign cyst on ultrasound. In addition, it can provide reassurance that no mass underlies a questionable palpable area. According to recent evidence, ultrasound can aid in the benign-malignant differentiation of solid breast masses and prevent biopsy for many noncancerous masses, such as fibroadenomas.


Q: What other diagnostic procedures are performed in mammography?

Once an abnormality (abnormal mass, calcifications, distortions, etc.) is detected on the screening mammogram, a diagnostic mammographic examination is generally performed in order to obtain special views of the abnormality allowing a more detailed evaluation. This additional mammographic examination may include the use of special X-ray maneuvers and magnification of the abnormality in question as mentioned previously.

Ductography is an examination that allows detailed evaluation of the breast milk duct and is indicated when there is a bloody nipple discharge or persistent discharge from a single duct in the nipple. There are approximately 15 to 20 major milk ducts that converge to the nipple. If the discharge is noted from multiple ducts or from both nipples, a ductogram is not indicated. The cause for multiduct discharge is usually related to a systemic cause (hormonal effect, pituitary disorder, etc.) and is not cancerous. The examination is usually performed by inserting a small cannula (thin tube) directly inside the duct ostium in the nipple and contrast (X-ray dye) is injected to fill the duct. If the cannula cannot be placed through the ostium, the abnormal duct (which is usually enlarged) can frequently be filled percutaneously with ultrasound guidance.

Magnetic resonance imaging is a special radiologic scanning method that is extremely accurate for evaluation of breast implants when there is a suspicion of implant rupture or leakage due to trauma or implant breakdown due to age. In addition, MRI is beginning to show promise as a tool that in the future may allow differentiation of benign and malignant lesions in the breast and provide better demarcation of the size of the lesion to assist surgery. In addition, MRI may help determine recurrence of cancer in the breast after treatment.

Nuclear Medicine Imaging, using sestimibi (Miraluma), is currently available as an additional diagnostic examination for selective patients. We are also using monoclonal antibodies for breast cancer under clinical research trials to evaluate their efficacy in selected patients with the hope of helping to differentiate between benign and malignant breast lesions.


Q: What are the procedures used to remove breast tissue for pathologic diagnosis?

The type of breast biopsy performed is predicated upon the type of breast lesion and using the following basic principles, understanding that many breast biopsies are benign (noncancerous):

Most accurate diagnosis with the smallest amount of tissue removed;
Least amount of trauma to the patient; and
Most cost-effective biopsy method.


Fine needle aspiration biopsy removes a small sample of cells from an abnormal breast lesion and requires the aid of the cytotechnologist and cytopathologist for preparation and interpretation. Preliminary results are usually available in a few hours with this procedure. Also, fine needle cyst aspiration is usually performed with ultrasound guidance in order to remove the fluid contained in breast cysts. Although cyst puncture for palpable lesions can be performed without guidance, it is more reliably accomplished when the cyst can be entered and completely evacuated under direct vision with ultrasound.

Core biopsy is performed with either ultrasound guidance or stereotactic guidance and allows the removal of small strips of tissue that the pathologist can analyze. Although this procedure can be performed to confirm malignancy in a highly suspicious lesion, more commonly the biopsy provides verification that a lesion is benign and thus prevents surgical biopsy or multiple follow-up examinations. Results from a core biopsy are generally available in 48 hours.

Needle localization breast biopsy is performed to guide surgical excision of nonpalpable lesions. The placement of the small wire may be done with mammography or ultrasound guidance. Mammography guidance is generally used for lesions presenting with microcalcifications without a mass. Once the small wire is placed in the correct location, the surgeon then has a guide wire to direct the removal of the breast abnormality. Once the abnormal tissue is excised from the breast, a specimen X-ray obtained on the tissue in order to demonstrate that the abnormality was removed from the breast. Generally, results from a needle localization biopsy are available in 48 hours.

*Source: Richard L. Ellis, M.D.; Memorial Medical Center, Department of Radiology
Division of Breast Imaging, Springfield, Illinois 62794


ABOUT LOBULAR BREAST CANCER

The following information regarding infiltrating lobular carcinoma and prophylactic mastectomy is taken from a very current (copyright 2000) and very reliable professional source **(please see reference below):

Invasive lobular carcinoma is the second most common type of invasive breast cancer and appear to more often be bilateral than other types of breast cancer. The reported range of bilaterality has been broad (6% to 47%).

In two clinical follow-up studies of patients with invasive lobular carcinoma, the incidence of future breast cancer in the healthy breast (contralateral breast) among infiltrating lobular breast cancer patients was similar to that of patients with invasive ductal carcinoma. The studies were 1) Infiltrating lobular carcinoma of the breast. Clinicopathologic analysis of 975 cases with reference to data on conservative therapy and metastatic patterns. Cancer 1996; 77:113. Data


**Source and Suggested Resource: Adapted from: Diseases of the Breast, Second Edition; Editors: Jay R. Harris, Marc E. Lippman, Monica Morrow, C. Kent Osborne; Publisher: Lippincott Williams & Wilkins; 2000; ISBN #: 0-7817-1839-2.

Here is feedback from one of our medical advisors, a leading breast surgeon:

The ability to detect a cancer on mammography depends on the difference between the radiologic density of the cancer and the density of the surrounding breast tissue. If the cancer has the same density as the surrounding breast tissue, it tends to blend in (unless it irritates the body and leads to the formation of calcifications). Ductal breast cancer tends to be much denser than normal breast tissue, so it is generally detectable once the cancer is over 10mm in size. Lobular breast cancer is much less dense and may be similar to the density of normal breast tissue. Although it is usually detectable on mammogram, there are more cases in which invasive lobular cancer was invisible on mammogram even though it was extremely large. Most invasive lobular cancers and invasive ductal cancers are palpable after they reach 20 mm in size. As above, lobular cancers tend to be harder to feel than ductal cancers.

Here are a few terms taken from this site’s Glossary and Breast Cancer Basics sections, that may be helpful to you and others reading this posting:

Lobe: A reasonably well-defined part of an organ separated by boundaries, especially glandular organs and the brain.

Lobular: Pertaining to the lobules (e.g., of the breast).

Lobular carcinoma in situ (LCIS): Abnormal cells within the lobule that do not form lumps. Lobular carcinoma in situ can serve as a marker of increased cancer risk.

Lobular carcinoma arises from the small end ducts of the breast and occurs in both invasive and noninvasive forms. The invasive form is thought to develop from, or be associated with, lobular carcinoma in situ (LCIS). Lobular carcinoma accounts for approximately 5% to 10% of all breast cancers and has a tendency toward bilateral (both breasts) involvement.

Lobules: Parts of the breast capable of producing milk.


RESOURCES TO HELP YOU

There is a great book out entitled "Be a Survivor" written by Vladimir Lange, M.D. My plastic surgeon and I served as consultants on the project (there is also a corresponding video and interactive CD-ROM). There are full color pictures including my breast reconstruction in the book, video and CD-ROM, as well as description of the various reconstructive surgical procedures and all major breast cancer types, stages, treatments and other important information. You can purchase the book through our site’s bookstore. A book that I highly, highly recommend for you was written by Michael Lerner, the Founder of Commonweal. There is a link to Commonweal in the Resources Section of this site and I will post it on this message (at the bottom) as well. The book is entitled "Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer". Another good book that extensively covers breast cancer and reconstruction is entitled "A Woman’s Decision" which is also highlighted in our "virtual bookstore". The books can be purchased on line in our virtual bookstore via Amazon.com. Another book I think will be helpful to you is entitled "The Road to Immunity: How to Survive and Thrive in a Toxic World" by Kenneth Bock, MD and Nellie Sabin. It covers in depth information about the immune system and how to keep our immune systems functioning at peak capacity. If finances are a problem, please let us know and if the books are available in our library, we can work out a lending situation for you.

We will be happy to send you educational materials, free of charge regarding breast anatomy, breast health, understanding breast changes, questions to ask your health plan about exemplary care (found on our web site under help yourself – 10 key questions for women to ask their health plans), various videos including nutrition during cancer treatment, dealing with side effects of treatment, tamoxifen, breast reconstruction and much more depending upon your individual needs.

In addition, WIN Against Breast Cancer has published a very extensive Breast Health/Breast Cancer Resource Guide. We will be delighted to send these materials to you (all of which are free of charge to patients and the public).

WIN Against Breast Cancer has several additional resources that I think will be very helpful to you. We have our Breast Buddy Breast Care Program which matches women who are at least 1-year post treatment (excluding tamoxifen) with new patients to mentor and support them throughout the diagnosis, decision-making, treatment and recovery periods -- for at least 1-year. We make every effort to match Buddies with new patients by age, geography, marital status, type and stage of breast cancer, type of treatment, hobbies and on and on. If you are interested, we could look into matching you with a buddy who shares a similar profile to yours. Depending upon where you live, this may need to be a telephone and e-mail relationship, but it certainly helps to speak with another woman who had a similar diagnosis and who faced similar decisions regarding her treatment options.

We have trained information specialists in our offices that can speak with you one on one to determine the best materials to send you (all free of charge). WIN ABC has an in-depth Breast Cancer Resource Guide with additional resources and suggested reading. We have a section on this site entitled "Help Yourself" that has many tips to help you get through treatment as smoothly as possible. You are more than welcome to call us at (626) 332-2255. If it is a long distance call for you, just ask us to call you right back so that the call is "on our dime."

You are also welcome to fill out the special Personal Profile Form (blue link at the top of this page) with your specific information and with requests for some of the information and resources I have outlined here. Your e-mailed form will remain confidential.


ADVOCATING TO RECEIVE THE STANDARD OF CARE YOU ARE ENTITLED TO

While I am sure that your husband can more than hold his own and work on your behalf, there is an organization called the California Women’s Law Center (CWLC) that operates a free legal clinic for Californians with breast cancer. Perhaps your state has a similar resource. We have a link to this organization in the resources section of this site. The CWLC publish a booklet entitled "Surviving the Legal Challenges: A Resource for Women with Breast Cancer" that although it focuses on California, could still provide you with some beneficial information. CWLC’s telephone number is (213) 637-9900; e-mail: cwlc@cwlc.org; web site: www.cwlc.org.

In California, the Department of Corporations has oversight over HMO’s. Governor Davis has established an office of managed care. Perhaps Connecticut has similar entities that can intervene with your HMO on your behalf.

Who is your HMO and at what level have you or your health care team been dealing with them? Please let us know.

As Shelly points out in her message, your legislators and the media can be wonderful advocates on your behalf and are more than happy to help you make contact with them and work with you on how to get your message across.


AN IMPORTANT REMINDER: It is very difficult to render an opinion without knowing all the facts of any one particular case. But one strong recommendation we would like to make is that you pursue your question(s) with your own physicians. You should feel fully empowered to obtain a satisfactory answer and feel free to seek a second opinion. We have some great tips on partnering with your health care team and key questions to ask your doctors, communication tips and informed decision-making tips to help you get the information you need.

WIN IS HERE TO HELP

I am holding you in my thoughts and look forward to hearing from you with an update on how you are doing and how we can continue to assist you to obtain the standard of breast cancer treatment that you are entitled to. Here is a quote that I have posted in my office: "Serenity is not freedom from the storm, but, the peace within the storm" --anonymous. Please try to maintain an inner peace while we work together to quiet this storm you have encountered.


My best regards,
Betsy Mullen
Founder, President/CEO
WIN Against Breast Cancer
www.winabc.org
(626) 332-2255

• Commonweal Cancer Help Program & Choices in Healing

Follow Ups:

• Re: Breast Cancer and Multiple Sclerosis - Kathi   8/19/2000 (1)
  • Re: Breast Cancer and Multiple Sclerosis - Betsy Mullen   8/20/2000 (0)

Post a Followup

[ Followups ] [ Post Followup ]

Please submit only once, then click "reload page" to see the updated board. Thank you.

Reload Page Post Message Message Board Search FAQ

Message Board Search FAQ