Hi- a person very close to me just got diagnosed with breast cancer and I'm trying to think of ways to support her. One thing I'd like to do is give her some good books. If you or someone you know survived this diagnosis, were there any good books in particular that really helped you navigate the struggle: medically, physically, and mentally? Thank you for your suggestions. Anon
I am a two-time survivor of breast cancer (21 years ago and 4 years ago). I highly recommend Bernie Siegel's ''Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon's Experience with Exceptional Patients.'' My first diagnosis was a particularly aggressive cancer requiring chemo and radiation. Learning the techniques in Siegel's book -- and reading about others -- gave me some power over my disease and made me feel a part of the treatment team instead of a victim or ''just a patient.'' It was very healing. Four years ago, I was diagnosed with a new primary cancer -- small and caught early. At that time, I found Susan Love's Breast Book interesting and helpful, but in a different way. It's an excellent resource. But I can't say enough about Siegel's book. (He has others, too, but I liked this one the best.) I was also fortunate to be able to hear him in person a few years after treatment. He's the real deal. Two-time survivor going strong
Dr. Susan Love's Breast Book is a great resource but I think it can be a bit overwhelming and daunting in the beginning.... Maybe after she knows more about her pathology and prognosis. It has some very serious stuff in it. I bought it for my sister, and she wasn't really ready for it until she knew what she was up against.. Joining a support group or a therapist who specializes in this is also very helpful to many but not all. I found Kelly Corrigan's site - circusofcancer.org a great resource for me on how to support a loved one... Good luck - continue to be there thru it all. It's amazing how some people disappear thru it all; it's tough. been there
Hi, Berkeley folk. I'm a 43 year old mother of two elementary school age children and was just diagnosed with breast cancer (invasive ductal carcinoma, ER-,PR-). Having been sick very few days in my life, and certainly never with anything as serious as cancer (I'm more prone to worried-well psychological problems ;)), I'm really struggling to figure out how to go about getting through this to the other side. Hopefully not in a box, unless a really comfortable sleigh bed in a fancy hotel counts. So, women who have or have had breast cancer, I'd love advice on navigating the waters. Surgeons you would or would not recommend, for instance, and the same for oncologists, second opinions, and the like. Basically: step one of surviving this thing - making sure I pick a team that can help me make the best possible treatment decisions. My insurance is basic HealthNet, through LBL, so Alta Bates is my default (but I would go outside if it meant much better care). Any tips on other aspects of your experience would be helpful as well, though currently my priority is nailing the ship together. D.
I'm very sorry about your diagnosis. Sadly, you are not alone - there are so many women out there fighting breast cancer. I've done some research; two people dear to me are fighting bc. I'm sure you'll receive lots of opinions and advice - first, I'd check out a wellness center/support center near you. Surgeon Dr. Laura Esserman at UCSF is amazing!!! She is both wickedly smart and compassionate - she treats each patient like an individual. She is bleeding edge too. Make sure to get multiple consult opinions - UCSF and Stanford are great comprehensive centers, right in our backyards. You want to make sure you have a fantastic surgeon and oncologist. Take time to process it all - I know the tendency is to want to move quickly. Oh, and make sure to ask about the Mammoprint and Oncotype tests; Esserman is a big proponent of using these - which determine how aggressive treatment, etc. needs to be, depending on the specifics of your pathology. Lastly, Stanford's Health library offers a free service in which they will send you latest research scientific publications about your type of cancer. Feel free to write me with any questions. Good luck. michele
You are a jewel among women, I can tell from your courage and sense of humor. Healing thoughts will be sent in waves your way from many, many people on this list. Aside from that new-agey sentiment, I hope that others will be able to help with more concrete and material suggestions. Good health and easy roads to you. holding healing thoughts
Hi, I was in your position almost 11 years ago, running around panic stricken until I had a plan. One thing to do is check out the Women's Cancer Resource Center . Another is to find a friend who will organize two weeks of meals for you after surgery. Someone did this for me, and it was a life saver.
I love my surgeon. Her name is Pam Lewis in SF. (415-668-8060)She worked in tandem with my plastic surgeon which I had done at the same time by Loren Eskenazi. My oncologist, Dr.Irwin is at the Comprehensive Cancer Center on Dwight, and he is wonderful, never impatient and very knowledgeable. That is also where I had my chemo. The CCC has support group information as well as many other free services such as visualization classes. I hope this helps. a breast cancer survivor
Start with the Women's Cancer Resource Center on Telegraph Avenue -- they have binders of doctors, and also people who will talk to you about their cancer experience. They will also print out research articles for you (which can save a lot of money because the medical websites all charge to download articles.)
I don't know if you are interested, but they also run support groups, and have a binder with support groups for your family as well. I like/liked some of these support groups, particularly the Writing In Other Words one at the Markstein Center at Summit Hospital.
It's challenging to have cancer with school-age children; you'll want to arrange (or have your partner arrange) for care and transportation while you are undergoing treatment. What was best for me was having my daughter in an after-care program that went until 6:00, so it was easier for my partner and friends to deal with the pickups; and so that her life remained reasonably stable. I had a different type of cancer, but if you'd like to contact me about the family management aspect of this, the moderator can pass my contact info along to you. I can also help you contact some other women I know who are recovering from breast cancer, if the WCRC contacts don't work out. Best Wishes for your recovery
I'm sorry about your diagnosis. I was diagnosed with stage 2b, ER/PR- Her2+ BC in October. I'm currently in chemo. All my care has been at Summit in Oakland. My surgeon is Jon Greif, plastic surgeon for reconstruction is Donnis Hobson, Medical Onc is Gary Cecchi and radiation onc will is Valary Uhl. I have been very satisfied with all my care. I got an informal second opinion from a highly respected oncologist at UCSF who agreed that my treatment plan was reasonable. I just couldn't pull all the logistics together to go in to UCSF for a formal second opinion when I was first diagnosed. That I regret a little and realize now that it wasn't a difficult as I thought it would be to get an out of network referral for a second opinion(my primary care doc told me it would be impossible, it wasn't). I do think that I am getting good care here and appreciate not having to travel to the city for treatment.
Dr. Susan Love's Breast Book has been really helpful as well as the website breastcancer.org. I get accupuncture from Amy Lee on Woolsey in Berkeley. I recommend her highly if you need chemo. I'm happy to share more about my experience. Maybe the moderator can give you my email. Idon't really want to publish it in the newsletter but would be very willing to get in touch with you. Best wishes. Anon
Hi Denise, Its a scary time, but you have a lot of other women in the area who have been through what you are experiencing. One way to get support is from the peer support program (COMPASS Program)at Alta Bates Summit Medical Center, from women who have been treated for breast cancer. You also need a good team of physicians. I am a breast surgeon and myself and my partner specialize in breast cancer. If you want to call my office, we can help you figure out what resources and help you might need. Even if your insurance doesn't fit our office, we can recommend someone good for you. Take care, Lisa Bailey, MD
Dear Denise: My heart goes out to you. Six months ago I was also diagnosed with breast cancer and found myself in the surreal world. I have been treated at Alta Bates and have been amazed by the warmth and quality of the staff and support services there.
I am 53 years old with a 12-year-old daughter. I took a six-month medical leave of absence from work and will be returning @ 80% next week. I have just been referred to UCSF for a second opinion on my prognosis and treatment plan. (I'm stage IIIC)
Rather than name names or go into all of the details, my best advice to you is to: ask questions about anything you don't understand; trust your instincts; be your own advocate; try to stay positive and optimistic; give yourself permission to laugh and have fun; be honest with your children about what's happening to you; find the courage to ask for and receive help from your friends, neighbors, co-workers, and family. You may be surprised by their generosity and compassion. I'm not normally a ''joiner'' but I found the support group at Alta Bates to be an excellent resource.
Sending you love and courage. Warrior Princess
Go to UCSF. We had a terrible experience at Alta Bates dealing with a different type of cancer, but have found UCSF to be wonderful. You have a right to go where you wish. Check it out. If it's not a good fit for you you can head back to Alta Bates. My husband is still alive because we went to UCSF
I had a mastectomy following a very large DCIS a few years ago. No chemo., but I'm on hormone treatment for follow up with an oncologist. My surgeon was Barry Gardiner in San Ramon. And, yes, he's worth the drive if your insurance will cover you (I was HealthNet, Hills Physician group). He's a pro and has been dealing with breast cancer for years. All the people in my Oakland doctors' office go to him for almost all surgery. And the San Ramon hospital is wonderful--small, personal, comfortable, great staff. If your insurance won't take Dr. Gardiner, you might call him and ask for recommendations. He knows everyone. His number is 925-275- 1210.
My oncologist is Alice Reier at Summit. I think she's great as well. She treats lots of breast cancer and is very on top of all the recent research. If you're interested, her approach to treatment can be very collaborative. She's very open to discussing why she's recommending something and thinking about alternatives. Her number is 834-3700. Her staff is great too.
I didn't go very far with second opinions because using these two doctors means you basically get this. If they're the slightest bit uncertain of anything, they call other doctors to discuss your case and get the opinions for you. They would coordinate second opinions if they thought they were necessary. Reier regularly attends a ''tumor board,'' which is a meeting of doctors to discuss their cases with others and get information about similar cases and opinions about treatment.
I can't recommend these two any stronger. They were the best part of a horrible experience. I can't imagine going through it without them. They're now part of my life-long follow up team.
I also read a lot on the website www.breastcancer.org. Their information ranges from anecdotal to very technical and addresses emotional responses as well as medical business. I found it useful to help know what to expect and to be as well- informed as I could in preparation for meetings with doctors.
Good luck. Email if you think I can be of any help. cindy
I had ovarian cancer but my advice and recommendations may still be helpful.
Information and Support Groups - The Women's Cancer Resource Center (www.wcrc.org) in North Oakland is a good resource, they have an extensive library and support groups. The Wellness Community (http://www.twc-bayarea.org/), in Walnut Creek, also is good though not so convenient, good information and discussions about nutrition and other things. Circle of Care , part of East Bay Agency for Kids (http://www.ebac.org/) is a great little agency in Oakland, near the Mormon Temple, they have support groups for people will illness, their caregivers, e.g., husband, and their kids. My son loved going there.
Surgeons - My surgeon was Jeffrey Stern and he was very good, but zero bedside manner.
Oncologist - I went to Larry Streiff and I would not recommend him. His staff was not responsive when I had chemo side affects and his office is a drip shop - haul'em in, hook'em up, push'em out.
Other advice - Ask a friend to arrange meals. Give her your email contacts, she contacts your friends, everyone signs up to deliver a pot of food, like soup, or stew, or casserole, you get it twice a week, everyone cooks for you once in three or four months (depending on how many friends you have).
Ask for help - with kidcare, errands, things you need or your kids need. People want to help.
Ask to be left alone - when you want to cocoon with your family and stop being asked how it's going and how your feeling and how great you look without hair, you are allowed to tell people you want some alone time. You can ask people to contact you only by email and tell them you will respond if you can.
Good luck, Rebecca
Hi Denise. Sorry to hear about what's going on right now. I am 39, also a Berkeley resident with 2 young kids and was diagnosed with Invasive Ductal Carcinoma in 8/07. I just had my last chemo--which will be followed by radiation and tamoxifen. I also have Health Net HMO, which I have been pretty happy with for the most part. I have Hill's Physician's Group though, so my docs may not be on your provider list. My surgeon is Dr. Jon Greif in Oakland. I cannot say enough good things about this man. He is an excellent surgeon, very knowledgeable and sensitive. I never felt rushed with him---a rare breed. He works in the same office as Dr. Lisa Bailey. She is also quite well known and liked, I believe. My oncologist is Dr. Gary Cecchi in Oakland. He is not Mr. Touchy- Feely, so may or may not fit the bill for you. He's been fine for me. He's been doing this a long time and seems very objective and knowledgeable. He gave me the facts and helped me weigh out the issues around chemo--didn't just tell me what to do. I did get a second opinion at Stanford--pathology and consultation with an oncologist. That was important to me-- although did not change Dr. Cecchi's recommendation. By law you are entitled to a second opinion and your insurance will pay for it. You will be making a lot of phone calls in the next few weeks/months to your insurance, docs, pharmacies etc. Be persistent and ask for what you need.
If you have chemo, seriousy consider acupuncture/herbs. My chemo was not too bad, and I'm sure this helped. My chemo nurse said that across the board, the patients that use acup. did much better. You should also check out the Women's Cancer Resource Center on Telegraph in Oakland. There are lots of decisions to be made, but you will figure it out. Feel free to contact me and best wishes for your healing. kelly
Like many, I have been forever changed by loved ones who are in their ''prime of life'' currently struggling with breast cancer. It outrages me that the Bay Area has such a high incidence - and yet, sometimes, I wonder what progress has been made. Anyway, how do others move on - and stay present - and not let the fear and anger and sadness get in the way? Lately, I keep examining my breasts, thinking I'm feeling things - and I just had a ''normal'' mammogram. I know this is life and that we only have so much control, but I think that I've become obsessive about this topic on all levels. Where can I productively channel this energy? Maybe a breast cancer cause - but there are sooo many - any recommendations? Trying to stay present
Unfortunately, my wife was one of those who were forever changed by breast cancer. It's definitely understandable to be afraid. Of course, there are lots of other things in life to be afraid of that could paralyze or obsess any of us.
Sounds like you may need some therapy for compulsive fear (I have fear/compulsive overthinking, too) However, I'm really responding to encourage you to contact and support Breast Cancer Action - they are the very best group around and they deal with the real politics and emotions, including outrage and fear, and they help explain the evolving science of breast cancer. In the midst of too much information, it's so refreshing to get solid facts and analysis without the suspect agendas of the medical/pharma world.
Their excellent newsletter was the only news source I could stomach or trust. (The Woman's Cancer Resource Center in Oakland was another wonderful resource.) Fear Manager
I\xc2\x92m undergoing chemotherapy for breast cancer and am looking for resources to help me out. I\xc2\x92d like advice on hair loss - whether or when I should get my head shaved and where is a good place to go to get it done? Also how can I help my 5 year old daughter get used to my hair loss \xc2\x96 should we go together to the hairdresser and get hair cuts at the same time? Also, are there support groups that anyone can recommend? Also would an alternative medicine practitioner be able to help me with the exhaustion of chemotherapy? If you know where I can go for answers to these and other questions, please let me know. Thanks! anon
The American Cancer Society is a wonderful resource for all things related to cancer. There are many incredible support groups for women with breast cancer (including Look Good, Feel Better and Reach to Recovery) and a plethora of information for you as the patient as well as your family. There is also an event coming up at the end of October called Making Strides Against Breast Cancer in Golden Gate Park. It is an awe- inspriging morning and very educational. Log onto the American Cancer Society website at www.cancer.org. There you will also find the closest field office to your home where you can walk in for additional information and help from volunteers. In addition, there is the Women's Cancer Resource Center on Telegraph Avenue in Oakland. The best of luck to you! :)Dana
Two local Bay Area Hospitals use Jin Shin Jyutsu practitioners for exactly the issues you raise regarding chemotherapy. You might contact the JSJ center in Scottsdale, AZ (http://www.jinshinjyutsu.com/Artof/artof.htm) to locate a practitioner near you who specializes in this healing art. I know of several people who saved their hair and maintained an appetite during their procedures, because of JSJ. Good luck! Nori
If you haven't checked out the Women's Cancer Resource Center , dash on over! They are great and have an answers to my questions or they get the answers.
When I was going through chemo, I was told to expect hair loss and I knew that I would get my head shaved before it had that patchy look. The day my 4 old gently touched my head and had a handful of hair, I made the appointment. I told him that my hair had been falling out and I was going to get it cut REALLY short. As I thought I might cry (which I did) during the shave, I decided not to take him with me. In front of him, I always tried to act as if nothing was unusual and everthing was how I wanted it. (Ok some of it was a bit hard for me like having yogurt or toast for dinner for a week.) Neither he or his 4 year old best buddy, or the other guy's 6 year old sister, ever commented that I looked wierd. I think my nonchalant facade was important.
Ok, general resources you requested- the Alternative and Complementary Cancer group at the Women's Cancer Resource Center is a group of women with a WEALTH of information. John Maynes at the American Herbal Pharmacy 510-845-4688 (in the same group as Issac Cohen who, last time I checked wasn't taking new clients), is EXCELLENT! John is (was?) an RN and an acupuncturist; I like the East/ West knowledge. I really feel that John's treatments kept me as well as I was during chemo and radiation. AND one of the great medical doctors of all time is Garrett Smith at 350 Parnassus in SF. He is compassionate, intelligent, and very positive about several alternative treatments such as acupuncture but he's also a pro chemo Western oncologist. Please contact me if you have any more questions and good luck. Indigo
I went through chemotherapy for breast cancer in 2003--but as a grandmother, aged 63. My grandchildren, who were 6 and 3 at the time, visited from New Jersey during the time I was bald and had no problem with it.
Being bald isn't as bad as the process of losing your hair. On advice from others who had gone through the same thing, I had it cut very short before it began to fall out. But then I woke up in the morning to wads of hair on my pillow, and the shower drain was clogged--so I went to my husband's barber (a woman, Nina, on Shattuck near Vine), who went over my head with clippers. I still didn't like the way it felt and looked, so my husband shaved my head with shaving cream and his safety razor. It was a surprisingly sensual experience.
My friends who have been through chemo have opted for wigs, and they've looked pretty nice, if not entirely convincing. You can go to a free workshop called ''Look Good, Feel Better,'' which is put on by very kind people. They give you a ton of cosmetics; they have free wigs you can choose from, and then one of them will style it for you. All the women in the group chose this except me. I just couldn't stand the idea of wearing a wig (too hot and confining) so I bought a lot of hats and scarves: a bandana under a wide-brimmed hat looks good, and there are hats designed for women with hair loss (I found them on the internet but can't remember the name of the website). At home I went bare-headed. Some women have to courage to do this in public too: wonderful earrings will set off your face, and you may find your bone structure is highlighted.
When my hair started growing back I covered my head less often, even when it was very short. We were on a tour of the Hearst Castle when a young woman with short curly hair came up to me and asked quietly, ''Are you a survivor too?'' It made me proud to say yes.
I didn't join a support group, although I have heard good things about them. I had my friends to share experiences with, and I continued seeing my Jungian therapist. That seemed sufficient. I have a very supportive husband and we were both retired, so I didn't have the responsibilities you have.
My oncology office was very good at controlling the side effects of chemo, and there are good days and bad days--it isn't one continuous period of feeling bad. On the worst days I couldn't go anywhere or do anything, I just lay in bed and looked out at the garden and listened to books on tape. On other days I felt almost completely my old self. I continued to walk for exercise and see friends, etc.
Your daughter will pose a challenge because it will scare her somewhat when you don't have your usual energy. I would try to find support from friends, maybe a teenager who could come in afternoons to give you a time to rest.
If you would like to talk, e-mail me with your phone number and I'll give you call. Joan
Deciding whether to shave your hair off or let it fall out is a personal decision. Some people want the control of shaving their head and want to save themselves that moment of horror when you wake up with hair on your pillow or see it going down your shower drain. Some would rather wait and see what happens. Some people cut their hair short themselves and have a friend or partner shave their heads. Any barbershop can do it, too.
Really, though, it sounds like you need a good one-stop shopping place for cancer resrouces. I'm assuming you're a woman and would encourage you to check out the Women's Cancer Resource Center . You also don't say what kind of cancer you have. If it's breast/reproductive cancer there tends to be a lot of resources. If not, it's harder to find what you need. But Women's Cancer Resource Center (in berkeley) is not a body- part specific cancer place: it's useful for what ails your body, head and heart.
I wish you the best of luck and hope in going through this. --8 Years Clean
I had chemo for breast cancer too. Before my hair started falling out I went to my hairdresser and had her cut it really short. Then when it began to seriously fall out I shaved it myself, with my husband's help (using his electric shaver). My kids were teenagers and they didn't like seeing me bald, so I wore a hat, scarf, or wig most of the time. With a five year-old it's probably important that she know ahead of time that you're going to lose your hair -- perhaps she could be with you when you get your head shaved. She might actually help you get through the experience!
I would like to recommend a great resource for scarves, wigs, and hats: A Lady's Touch, 3232 Elm in Oakland (on Pill Hill between Telegraph and Broadway), 655-4547 (call ahead to check their hours). The owner specializes in head coverings for those in cancer treatment, and she has a wonderful selection of scarves and hats. She also has a large range of wigs and will help you find the right one, styling it for you if needed. She helped me get through a very uncomfortable process in style. She also helps you figure out how to bill your insurance for the head coverings if you have coverage for that. Your daughter might enjoy going there with you and helping you shop.
I used weekly (sometimes twice-weekly) acupuncture to help me get through chemo, and I think it boosted my energy and helped me recover quickly from each treatment.
Best of luck to you! I hope you get through it all smoothly. B.D.
Start with the Women's Cancer Resource Center on Telegraph Avenue 601-4040. They have interns who will help you research various topics, and resources in the community. They also have various support groups which are facilitated by women who have recovered from cancer.
There is also Circle of Care which has support groups for parents and children. They meet in Oakland near the Mormon Temple. I can't find their number at the moment but they will have it at the Women's Cancer Resource Center. They also can provide more individual support for your child, particularly if you don't have other resources.
In Sausalito there is a group called Center for Attitudinal Healing which holds biweekly support groups from families where one member (sometimes the kids, usually the parents) has a life- threatening illness. This was the group my daughter (8 at the time we started) preferred.
The place where you are being treated may also have resources. There are various mind-body classes through Alta Bates that can help you as you go through your treatments. There's also a center at Summit called the Markstein Center at Summit.
Although you may feel alone at the moment, there are many of us who have had to deal with cancer while raising our children. Unfortunately, we end up each feeling alone, at first. You can email me if you want more info, or to talk. Take care! cd
The Women's Cancer Resource Center in Oakland has a wealth of information, support groups, and other resources. They have a library where you can come and browse, or you can request info. via their website, www.wcrc.org martha
There is a very wonderful acupuncture/Chinese medicine clinic in San Anselmo (Marin) called the Pine Street Clinic. They specialize in working with women with cancer and children with terminal illnesses. It is a beautiful location and very special place. Perhaps they can help. All my best to you.
Please try the Women's Cancer Resource Center : great resources (both standard and alternative) and support. They're on Telegraph. Bonnie
The Women's Cancer Resource Center can be a good place to start to get recommendations for local resources. There is a support group at Alta Bates, and also a younger women's support group at Alta Bates that's run by a woman who had breast cancer at age 35. Now she's 10 years out....but either Alta Bates or WCRC should have contact info. for how to get in touch with her or the other support group. You don't have to be receiving treatment at Alta Bates to attend.
Also, Carla Dalton is an acupunturist who has done a lot of work with people in treatment. Her number is 524-4812. anon
I don't know where you are, but i think that one of the best resources in the bay area is The Wellness Community in Walnut Creek. They provide a wide variety of free support groups for people living with cancer as well as their families and caregivers. They even have a special program for children. In addition to support groups, they have a variety of other resources and an exellent library in a cozy setting. You can check out their offerings at www.twc-bayarea.org. Best wishes to you and your family. Tara