Treatment for Cancer

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Questions

Seeking treatment for young father's esophageal cancer diagnosis

May 2013

Hello, My partner was just diagnosed with esophageal cancer. We are shocked because he has none of the risk factors and is in general a very healthy person. We are trying to move forward quickly and I wondered if anyone here had information to share about the following questions.

1) Does anyone know the top rated hospitals for this type of cancer (nationwide). We've found some information but it's hard to get specific information.

2) We have Kaiser. Does anyone know about how Kaiser ranks in care for this type of cancer. And does anyone know what Kaiser might be best for this type of cancer (so for example, in Georgia, southern cal, other locals)? Also best surgeons in Kaiser?

3) Kaiser says it won't pay out of network for any procedures it covers but of course we'd like the option to go out of network if we find a hospital/surgeon that ranks very highly. Any suggestions in this regard? How to go out of network and get coverage/partial coverage?

4) We have a 5.5 month old baby. Does anyone have experience with chemo/radiation around young children? We've read some safety guidelines from ACS about exposure risk but wondered if there were suggestions or thought on this.

5) Finally, our baby is in daycare and brings home a new illness at least a couple of times a month. We were thinking of taking him out of daycare during treatment. What have other people done during cancer treatment?

Thank you so much for any advice or information. We are trying to gather as much information as possible to make good decisions. rachel


Obviously you want more than one opinion vis a vis how to proceed. Kaiser is 46 percent of health care in the bay area. it pays it's doctors well and hires good people--Within Kaiser, northern California is probably the best. though, of course, each of Kaiser's med centers has its strengths and weaknesses. There are a lot of people in Kaiser who are experts at dealing with this relatively common cancer. But--check with your gastroenterologist (information from the web) the person with a research interest in esophageal cancer.. is Douglas Corley, MD. his opinion may be useful.


Hello there!
So sorry to hear! Some advice from a longterm cancer survivor- first, run, don't walk to the Ida and Joseph Friend Cancer Resource Library at the old Mt Zion Hospital (now UcsF?) They have an amazing library there and FREE research librarians who will help you research a cancer center of excellence and figure out which places/treatments/questions/trials you want to investigate. You can also google ( or call( the national institutes of health - NIH- and find out which centers are considered treatment centers of excellence for esophageal cancer. Certain centers always come up- Seattle, md Anderson, sloanketterinf, sometimes Stanford... Depends on your cancer. With my cancer, I did something recommended in a book I read... I called some experts and said, if you couldn't trat me, who would you recommend? Same name kept coming up. . Mt Zion also has a Monday night group for adults w ca diagnosis, always open and free, and with people there who have gotten kaiser to pay for some amazing things. They also have experience w things like cancer care researchers/advocates that can help you advocate for the treatment you decide you want. Once you're clear about which conventional medical treatment you're going to use, holistic support might include seeing Marcey Shapiro MD in Albany -510.525.2200 or going to the Pine Steeet Clinic in Marin. I use a supplement called wholly immjune that she gives me. You are right that nanny share may be safer than daycare for awhile if chemo is being considered.

Be assertive now, find the treatment/treater you want, then breeeeathe. In a weird way it can be a gift, make you slow down and focus on what matters today - your love, your life.It's a road bump.
Sincerely wishing you well
Been there


I'm sorry to hear about your partner. My father had esophageal cancer when my brother was 6yo. If possible I would recommend going to UCSF. Its local and they have great GI cancer center. I think it is okay that your child continues daycare despite the many viral infections that children that age tend to get. Best of luck. -local doc


My husband was diagnosed with brain cancer when our daughter was five months old, 21 years ago. So I know some of what you are going through. We had Healthnet at that time, but since then I've had close-up experience with Kaiser Oakland cancer treatment & major surgeries; my current partner is a longtime cancer survivor and has had many many surgeries and other treatments at Kaiser. I've been extremely impressed with Kaiser.

We kept our baby close by--she even slept in Alta Bates at night near her dad, and we didn't let social workers or the medical staff let their concerns and models override our emotional needs, whether for close connection or rest and quiet when it was necessary. I was lucky to have family and friends who helped. I'm not sure what to say about the daycare/illness question except to say that you will all feel your way as you go together--It's like you've suddenly been hit by a tornado, I know. You and he will use your best judgment and improvise as you go and protect each other and your kid. I can't help with the practical questions, but if you want to talk ever please contact me. Susan


My heart goes out to you.

It is frequently the case that even good doctors are oblivious as to the home circumstances of their patients, and fail to prepare the families for all that the treatment involves.

A friend who had a family member undergo home radiation therapy reported that there was toxic radioactive material brought into their home. Other family members were irradiated as well as the patient. If this kind of treatment is ordered, you might want to consider either getting the baby into a non-radioactive environment or having the treatment done outside of your home. Your partner's comfort is important, but the baby's needs must come first. Anonymous


Sloan-Kettering Cancer Center in New York City is the best place in the nation for treatment of esophageal cancer. The nation's medical experts in this field are there. Don't delay in getting the necessary treatment. I wish you and your partner the best. Fran


I am so sorry you have to deal with this. I have not had anyone close go through this experience, but I do have a friend from work who is an esophageal cancer survivor. I reached out to him as he is a peer councilor at UCSF and I will post his response below (it doesn't address all your questions but I hope it is a start). His response:

Regarding esophageal cancer, it's a devastating diagnosis.

There are online help organizations and depending on location, some local peer support groups. It can be helpful to seek out online resources for advice during early decision making. However as in all online sources, some judicious evaluation of advice is warranted. They can sometimes help someone sort through local treatment options.

There are some large and regional medical centers highly regarded for esophageal cancer, for example MD Anderson, USC, and University of Pittsburgh.

Below are some online resources:

  • http://www.acor.org Association of Cancer Online Resources. At the main page, type in esophageal cancer and it will point to the ec community.
  • http://www.ecaware.org/get-help/helpful-links/echat/

Many of the large medical centers have good information about treatment options. The UPMC website for esophageal cancer for example, is a good reference. Another very helpful source available only in archive is the following: http://web.archive.org/web/20110701110525/http://www.eccafe.org

I do hope this helps and I would recommend reaching out to the UCSF Cancer Resource Center peer support for more personal advice and connection with a survivor. I wish you the best in this journey. Sending healing thoughts


Dear family, We received the most help from Dr. Robert Rowen in Santa Rosa. He has the latest cancer treatments and our patient, who was sent home to die from Kaiser, went to Dr. Rowen. He became cured and has been well for 3 years. The trouble with most chemo and radiation is that sure it kills the cancer but it also wipes out the immune system and the cancer cells grow back faster than the immune system grows back. There is also no diet support from conventional therapies and diet plays a key part in health and recovery. We all follow the anti-cancer diet now that we know about it with no processed foods and no sugar and we have never felt better. Why do they not tell us this when we go to the doctor or the hospital is an eternal mystery to me. Please take heart that there are cures for cancer but not in the hospital unfortunately. maia


My best friend was diagnosed with stomach/esophageal cancer in 2007. She and her husband researched cancer centers around the country (including flying around to meet with various doctors) and ended up getting treated at UCSF.

I do not know for sure, but I don't think there is any risk for your child being around your spouse after radiation treatment. My husband had radiation for Hodgkin's disease when my son was 18 mos. old and I never heard this was a problem, anyway. They beam it pretty directly at the tumor site. As for the daycare issue, I would do whatever is least stressful for your family during this time. My son stayed in preschool throughout my husband's treatment (both chemo and radiation) and the only thing we did differently was making sure he got a flu shot.

It's tough - you have my deepest sympathies.


Alternative cancer treatment - Ozone?

April 2008

My Dad has melanoma cancer and just had brain surgery to remove two tumors. He has tumors in other areas as well and I'm interested in exploring alternative treatments for him. I've started reading about Ozone therapy. I'm trying to find a practioner who uses Ozone to find out more information. He lives in Colorado but we'd be willing to fly him somewhere as well. Any help is greatly appreciated. Thanks! S


There is no scientifically peer-reviewed data on ''IV ozone therapy'' for cancer. I suspect that it is a scam. Do not waste resources on such treatment unless there is good peer-reviewed data concerning its safety and effectiveness.

Most ''new'' treatments are supported by clinical trials, and these are usually free.

Caveat emptor. Robert


Colon cancer alternative treatment?

March 2008

My mother was diagnosed with colon cancer that had already metastasized to the liver last year. She had chemotherapy, colon surgery, more chemotherapy and then liver surgery. Unfortunately, they could not remove all of the liver tumor. When we went back to the oncologist at Kaiser and the oncologist at UCSF for a 2nd opinion, we found out that chemotherapy would only extend her life by an average of only 2 months. My mother had never been sick before in her life, had no medical problems and had been on a 12 mile hike only weeks before her diagnosis. We are devastated and want to pursue alternative treatments. We are flying to see a healer in Anaheim next week to try herbal therapy. Does anyone have any other suggestions? My mom has an active life with lots of friends and family that love and support her. She exercises and eats a healthy diet. We will do anything we can to help her. Judy


Please don't waste your time and energy on a ''healer.'' Instead, find the best oncologist in the country who specializes in colon cancer and go there for a definitive opinion. Try M.D. Anderson Cancer Center, which I believe is in Texas. They are used to scheduling appointments for patients that urgently need an expert opinion. been there


I lost my father to colon cancer when he was 44, which was 16 years ago, so what I'm offering is dated. I am from Houston, home to the highly respected MD Anderson Cancer Center. People go there from all over the world for their cancer treatment. It's worth considering. In addition, as a ''last resort'', my dad participated in a trial for a new cancer treatment- while it was too late to help him, it sounds like it's had a big impact on treatment. He participated through the Stehlin foundation http://www.stehlin.org/index.asp. They're another great resource. I don't know what the best options are for your mom since her cancer has already mesastized- but I wish you the best. If it boils down to 2 months, then just go have a ball. Sometimes I think 2 months of great quality time is worth more than two years of a horrible battle.  c


Cancer treatment in Tijuana?

June 2007

Has anyone had success treating advanced cancer in Tijuana? We recently received a recommendation for a consulting doctor at Oasis. Is this guy for real? Desparate but (hopefully) not Stupid


I am so sorry to hear that you are in this situation, and I wish I didn't have to share my own story. 8 years ago I researched the alternative cancer treatment clinics in Baja as I sought a place where my mother could receive treatment for her advanced melanoma. We visited Oasis and several others in Tijuana; she eventually spent almost 3 weeks at Hospital Santa Monica in Rosarito Beach.

I have a hard time speaking objectively about them, and perhaps would feel differently (of course) had the treatment worked and had she lived. The Hospital was very expensive. Some of the doctors and nurses were very kind and attentive (to be honest - the director gave my mother and I the creeps) - the treatments made some kind of sense to us (as much as chemo did; and we both used alternative therapies before). So coffee enemas, weird magnetic things...One downside - the quality of the food was horrible (all bought at Pack and Save). But the place was pleasant. There were a lot of really sad, desperate, ill people - this was both hard to handle, and for my mother - it was also helpful. She felt she could relax in a way being around others in the same situation she was in. She made a really good friend (a short friendship, albeit) and laughed a lot.

I know she didn't regret going there - if for no other reason, it was a break from the nasty chemo/radiation/family drama - and she could die feeling like she'd tried everything. She needed this. Had she not gone I know she would have felt that nagging at her.

Knowing what I know now - that it didn't work - I sometimes wish we'd taken that money and just traveled somewhere that she'd always wanted to go to...I also have horrible nagging wonderings about whether it's a big scam. The director was making tons of money. It was hard to get a sense of how many people actually recovered - Partly because when people got there, their cancer was really advanced. Not good odds anywhere.

It also seemed that the treatments were more effective for some kinds of cancers. My mother's friend had uterine cancer - she'd been going for years and was keeping the cancer under control.

It's a nasty disease, and a nasty place you're in. Visit the hospitals first - we saw a couple in Tijuana that were just horrible. I think about this quite often - I do know that in the end it really was important for my mom to die feeling like she'd tried everything - that was her personality. She was able to die with some kind of peace knowing she'd put up a good battle and had tried the entire range of treatments.

Good luck to you. (That sounds trite but it's heartfelt). e


Hi- I am sorry that you are facing cancer. I know nothing about the physician/facility you mentioned, but wanted to share an experience. I had a friend who had breast cancer. As a highly visible public personality, she didn't want to risk loosing her hair on camera and didn't want the unpleasantness of chemo. She researched the internet and found a place in Mexico that looked legitimate with a large medical staff and gave hopes and visions of a cure. She visited twice, enduring herbal treatments, coffee enemas and soul searching. My friend died of cancer. Her family and physicians all said that she could've made it had she stayed here and fought.

I don't want to scare you. Really. But please look at the options around you. UCSF, Stanford and John Muir all have amazing cancer programs with the latest technology. Why go to another country with a less-skilled oncology staff, when you can be treated here, at home, near your family, with the best?

I lost my friend for what I believe to be a foolish decision. Her vanity over her hair and breast took her down the wrong path. Each person is different, I know, and the struggle is personal, but please look at the programs around you and reconsider.

Best of luck to you and your family. Sending you good energy. don't want to lose another


Supplementing cancer treatments with alternative therapies

Jan 2006

I have a close friend that was just diagnosed with Hodgkins Lymphoma. She is 32 and otherwise healthy. She will start treatments next week at Stanford. She would like to supplement traditional therapy (Chemo etc) with alternative therapies as appropriate. Here is where I need advice... How do we find a reputable person (natropath, osteopath, etc... ) to advise her on what supplements and other treatments are safe and effective in treating symptoms and/or the cancer itself? Any thoughts (recommended reading, contacts etc..) would be appreciated. Thanks!


I suggest that you call my naturopathic doctor, Dr. Clare Garcia. 510.410.1087. Part of her medical training included working in an oncology clinic and I've heard her mention working with patients with cancer. She's also very sweet, knowledgeable and perceptive. Best wishes to you and your friend. Ann


There are a few local organizations that you or your friend can contact that would have information about reputable local alternative medicine practitioners that work with cancer patients. The Wellness Community in Walnut Creek, Womens Cancer Resource Center , and the Charlotte Maxwell Clinic all have good resources and information. They also have support groups and other services that she may find very useful. Best wishes to your friend. Tara


The Women's Cancer Resource Center (Telegraph Ave, Oakland), has a library and a number of support groups including one on alternative treatments. They will also match a woman with cancer to someone else who has had a similar type of cancer, so you can get more information and learn what questions to ask. They also have volunteers who will research questions you have -- so you don't have to pay for the med-line articles.

The Charlotte Maxwell Clinic provides complementary care to low-income women. They also are a good place to call and find advice.

Almost all of the hospitals that treat cancer have some complementary services. Alta Bates has yoga, guided visualization and a few other things (you don't need to be getting your treatment there to go to the classes -- just go to the cancer center or call them for the schedule). UCSF at the Mt. Zion site has similar classes including pilates. (My husband says it's a loss leader -- you spend thousands on treatment and they throw in a yoga class.)

There are many resources out there, and if you get started with one, you are likely to find some of the others. anon