Ask Hester
11/19/2009 (12:11:05pm)Tags: MS support groupComments: (0)
Hi, I was wondering if BIDMC has a Multiple Sclerosis Support Group? I have a friend with MS who attends a group out of the Lahey Clinic in Lexington. It would be very helpful for those of us with neurologist from BIDMC. Thank You, Ila
Ila,
Thanks for the question. I consulted with a colleague who works in the Neurology Department, and she told me (sadly) that we do not have such a support group. She suggested that you consider an excellent group at the Multiple Sclerosis Society in Waltham. You can reach them at 781 890-4990.
11/10/2009 (8:37:38pm)Tags: pancreatic cancer father family memberComments: (0)
Hi- My father was just diagnosed with pancreatic cancer. I am still in complete shock, sadness, anger, etc. How do I maintain a positive attitude and no get depressed and stay strong for my family. Of course the first reaction is that he is going to die, pancreatic cancer is the worse is it not?? Thanks for listening Lori
Lori,
Thanks for writing, and I am so sorry that you and your family have this news. Of course you are sad, angry, etc. I would actually worry about you more if you were not. First thing to remember: the immediate days and weeks after a diagnosis are the worst. Things truly will settle down a bit once he begins treatment, and you will all figure out how to be helpful and what to expect. Most important thing to remember: yes, pancreatic cancer is a terrible disease. However, many people are treated and do well for a very long time. Let's assume that there is no reason why your father can't be one of those people.
In addition to loving and supporting your dad,you will need to take care of yourself. This is a marathon, not a sprint, and it is really important that you continue with your own life. See your friends, exercise, get enough sleep, etc. It might well be helpful for you to talk with someone about your feelings and this difficult situation. If your dad is being treated at BIDMC, I (or one of my colleagues) certainly could be helpful. If he is being treated somewhere else, ask his doctor for a referral to an oncology social worker.
I will be thinking about you and wishing you, and all your family, well. This is indeed horrific news and very tough, but please remember that he may do very well. It is indeed possible.
11/8/2009 (9:49:59am)Tags: noneComments: (0)
Hi Hester I was just diagnoised with stage 4 ovarian cancer in February 2009. I had 3 chemo treatments, then debulking surgery, then 3 more chemos. They tell me I am clinically well. - I guess that means I am doing well. I have two questions for you or your readers. 1. I am having some issues with adhesions. Is there something I can do to make my pain be less? It doesn't always hurts but sometimes it gets really bad. Will this go away or do I have to live with this? 2. One of my doctors, doesn't seem to look me in the eye when they speak, I think they like me as a patient but I am starting to worry that maybe they don't have a lot of hope for me. Maybe this is just an overactive imagination. My friend died two years ago of stage 3 ovarian cancer, she just lived 3 years. Do you have a group that meets at night? I work during the day but would like to come to one of your groups. Thanks Jennifer
Jennifer,
Thanks so much for your note.
1. I have heard from other women, after this surgery, of continuing discomfort from adhesions. If it is really bad, a second surgery sometimes can clean it up. Obviously, that is a last resort. Some women have been helped by PT and massage, and time often makes a difference. I have passed your question along to the members of my GYN cancer support group, and will share any of their suggestions.
2. Your question about your doctor's style/lack of eye contact is a particularly great question. Without knowing who your doctor is, I am POSITIVE that it does not reflect any sense of hopelessness or impending bad news or anything negative. Our doctors usually do not realize how carefully we watch them for any body language signals, how we remember and worry about (or appreciate) their words, how important every nuance of our interactions can be. I really expect that your doctor is just not so skilled with communication and does not know the importance of maintaining eye contact. If you are comfortable doing so, you would be doing him/her a favor (and all future patients) if you said something like: "You know, when you don't look me straight in the eyes when we speak, I start to worry that you are hiding bad news from me."
3. Unfotunately, my support group for women with GYN cancers (which is a terrific group) meets from 11:30-1:00 every other Wednesday. If your office is not too far frm BIDMC, might you be able to take a long lunch and come once a month? If not, Facing Cancer Together (the old Wellness Community) in Newton has a few general support groups that do meet in the evenings.
10/23/2009 (12:48:52pm)Tags: noneComments: (0)
How come you have to consult your physician before wearing deodorant if you have kidney disease?
I am thrilled that people are reading this forum and asking questions. However, I have to admit that I had never heard of this before and had absolutely no idea how to answer. A quick Google search brought up the following, but it is clear that it really is something that you need to discuss with your doctor. Thank you for educating me about this.
Its because some deodorants have aluminum. Aluminum is removed from the body primarily by the kidneys. Thus, people with kidney disease may not remove aluminum as effectively. The FDA issued a ruling that requires all U.S. antiperspirants to carry a warning statement to make consumers aware that exposure to aluminum from antiperspirants might need to be discussed with their doctor. If you have kidney disease, its suggested that you consult with your doctor about the warning statement.
For perspective, aluminum is from the food and water we consume and the air we breathe. Daily aluminum intake from food and water is thought to be much greater than exposure from daily use of antiperspirants or other beauty care products. Hope this helps!
Source(s):
used to be a dialysis RN and used the info from suredeodorant.com to educate patients
10/22/2009 (11:41:11am)Tags: noneComments: (0)
I would like to find a therapist who either specializes in dealing with therapy for persons who have been diagnosed with cancer, or who have had cancer themselves. Also, does BID have a weekly cancer support group for patients. Amy
Amy,
Thanks for the question, and you have come to the right place. I manage the Oncology Social Work Group at BIDMC, and all of us are experienced therapists who have been working with cancer patients for years. As you know, I have had two breast cancers, so bring that personal experience to my work. Depending on your particular diagnosis, there will be someone in my group who is most appropriate and knowledgable. Addtionally, we work with a psychopharmocologist who is skilled at prescribing medications (usually anti-depressants or anti-anxiety meds) for people in cancer treatment. We also have a number of support groups:
1. Group for Women with Newly Diagnosed Breast Cancer (or who are currently in adjuvant treatment for breast cacner)
2. Two groups for Women who have Completed Treatment for Breast Cancer
3. Group for Women with Stage IV cancers
4. Group for Women with GYN cancers
5. Group for Men with Prostate Cancer
6. Group for People with Melanoma
7. Group for Caregivers of People Undergoing (or planning for) Bone Marrow Transplant
To make an appointment or for more information about any of these groups, please call me at 617 667-2661 or email me: hhill@bidmc.harvard.edu
9/30/2009 (7:50:13pm)Tags: noneComments: (2)
H Hester, My freind Carolyn Michaeli recommended this blog to me because I have concerns about Tamoxifen. I have been taking Tamoxifen for about 2 years (diagnosed as double positive and HER2 positive) and, during this entire time I have also been taking Wellbutrin. I read that the Wellbutrin can interfere with the effectiveness of the Tamoxifen but no one in my medical circle seems to think it's a big deal. Neither my oncologist or the pharmacist at CVS seemed aware of the issue and kind of "pooh poohed" it when I mentioned it to them. I have stopped taking the Wellbutrin but now I also just read a study that implies that women who do not have symptoms such as nausea or severe hot flashes may not be metabolizing the Tamoxifen properly and therefore are not getting benefit from it - I have mild hot flashes but that's all. Here is a link to the physician's information regarding this study http://www.tamoxitest.com/Tamoxitest_physician_information.pdf . My question to you is, should I be worried and should I have the DNA test suggested in the article? Thank you
Thank you for this question, and it is easy to empathize with your questions and concerns. The easiest response is to comment on your medical caregivers "pooh poohing" your worries. Number one: any concern on your part needs to be taken seriously, and minimizing it is not helpful. Number two: The information about possible negative interactions between Tamoxifen and some anti-depressants is new and not so universally known. I would strongly recommend, if you feel that an anti-depressant would still be helpful, that you consult with a psychiatrist/psychpharm who has been trained in psycho-oncology. Most major medical centers have such a person. If your doctor cannot make this referral, feel free to email me: hhill@bidmc.harvard.edu, and I will try to be helpful.
The next and harder part of your question is related to the presence or absence of hot flashes and what that perhaps means about the efficacy of Tamoxifen. You are right that there have been a few recent studies that suggest this association, but I think the jury is still out. I especially thank you for the link to the test; this was new information for me. It may, of course, turn out to be a valuable tool, but it looks as though that is not yet known. That leaves us trying to balance the marketing/sales pitch of the company and your own needs. If money is no issue (since it looks as though you can't count on your insurance to pay for this) and if you are aware that the results of this test are likely unproven and if it would make you feel better, yes, go ahead. If any of these "ifs" are negative, I probably would not suggest that you proceed--at least not until/unless you have a conversation with your medical oncologist about it.
So, what can you do? If you feel that an anti-depressant would help you, you can consult with someone who knows about all the possible interactions between cancer drugs and mental health drugs. If you are doing okay without the Wellbutrin, and are still worried about whether the Tamoxifen is helping you, you can speak further with your medical oncologist. Remember that Tam has been around for decades, and there are many, many studies that prove its value. If you remain unconvinced and worried, you can ask about taking an AI instead. Good luck and please let me know what you decide to do. It is really important that you are comfortable with your treatments. Ask questions and don't settle.
9/10/2009 (6:15:29pm)Tags: swollen glands ovarian cancer recoveryComments: (0)
HI Hester, I am recovering from ovarian cancer chemo and was told that it is normal for my glands in my neck to be swollen during chemo...I am 5 months out and they are still swollen and tender. It sure has taken longer to "bounce" back than I thought it would. Thanks.
Thanks for the question. I honestly don't know what to say about swollen glands (do you mean lymph nodes?) except to say that if was normal during treatment, it most likely is still normal. Having said that, it seems worth a call to your doctor just to say that this has persisted , and you want to be sure it is nothing to be concerned about.
I do know what to say about a slow recovery. The rule of thumb is that it takes at least as long as the total duration of treatment to feel fully physically and emotionally recovered. This means months. This means a long time. Of course, the general direction is positive with increasing numbers of good days, but it can be frustrating and worrisome to be dealing with fatigue or other symptoms months after chemotherapy is done. You do need to remember that this is normal and expected and not a sign that anything is wrong. Your body has been through a lot. It will get better. I promise.
9/8/2009 (10:38:20am)Tags: survival recurrence DFSComments: (0)
Hi Hester - I am confused regarding how much time passes from diagnosis and treatment and how that relates (or not) to increased survival. I always thougth that the longer you were out from a cancer diagnosis the better your survivoal rate was, but is seems that for breast cancer that may not actually be true? Thanks.
by Chris on Monday, September 07, 2009 at 8:44:20 pm
Chris,
Thank you for this question. For all of us, this is the big worry. For some kinds of cancer, being healthy five years later is a major marker. For breast cancer, that is not true. As you know, breast cancer can recur anytime--years later. I occasionally meet someone who has been well for more than fifteen years and then has a recurrence. When this happens, I remind myself (and am reminding you) that almost everyone else in her cohort, women who are fifteen years out, is doing fine. I see the rare exceptions.
Here is the truth as I understand it: the majority of breast cancer recurrences do happen in the first few years. The risk, however, never vanishes. Each year that you stay healthy, the odds are better that you will stay healthy. That has to be the perspective. One reason we may be seeing more late recurrences is that treatment is so much better. Current adjuvant chemotherapy regimens, and all the hormonal treatments for women who are ER positive, are resulting in longer disease-free survival (DFS). This likely means that more women are dealing with a recurrence 8 or 10 years after diagnosis when, before treatments were this good, they might have had the recurrence after 2 or 4 years. Longer is definitely better, but we all hope for "never."
9/2/2009 (8:25:47pm)Tags: unhappy proper treatment doctorsComments: (0)
hi hester. i spoke with you a while back on the "other" site. I TOLD YOU THEN THE WRONG STAGE OF MY BREAST CANCER. I HAVE STAGE 2. I WAS ONLY RECENTLY TOLD. I WAS GIVEN A MASECTOMY, NO CHEMO OR RADIATION. IM UNINSURED, SO THEY, BROWARD GENERAL HOSPITAL IN FT LAUDERDALE FLORIDA PUT ME ON HILL BURTON. MY MOM DIED IN HER 50'S FROM BREAST CANCER, MY SISTER, A TEACHER, HAS STAGE 2 ALSO. BUT, BEING INSURED, SHE HAD A BILATERAL MASECTOMY, CHEMO, RADIATION, AND WILL HAVE HER OVARIES REMOVED. I AM PAYING HER ONCOLOGIST, OUT OF MY POCKET, FOR A SECOND OPINION. REMEMBER IM THE ONE WHO IT TOOK 8 LONG MONTHS FROM TIME OF DIAGNOSIS TILL I GOT MY SURGERY. THEY SAID NO ABOUT REMOVING BOTH BREASTS. BUT, YET, THIS VERY YOUNG DR WANTED TO "practice" AND DO A TOTAL LAPROSCOPIC HYSTERECTOMY ON ME. MY ONCOLOGIST SAID THAT IT WASNT NECESSARY. NOW, POINT, WHY WOULDNT THEY DO WHAT IS RIGHT FOR THE PATIENT AND REMOVE BOTH BREASTS, YET THEY WANT TO GIVE ME AN UNEEDED HYSTERECTOMY. THIS IS NOT MEDICAID, I PAY ALOT OF OUT OF POCKET. ARENT I ENTITLED OR DONT I HAVE THE RIGHT TO PROPER TREATMENT???????????? DISGUSTED AND MAD NANETTEH
Dear Nanetteh,
I am glad to hear from you and so very, very sorry that you have had continuing troubles. It is impossible to understand everything that has happened or to say anything that will be comforting. It does sound as though your care has been less than optimal, and, for sure, you have not felt well cared for.
Whatever the details, your experience is an excellent example of much that is wrong with our health care system. Everyone is entitled to first rate care, good explanations of options and decisions, and a respectful relationship with her doctor. This has clearly not been your story. I understand why you are mad and disgusted, and I realize that a conversation about the US health care system's faults does not help you one bit.
I remember trying last year to help you connect with an oncology social worker in your area. Did that ever happen? I am not well versed on Florida resources, but there must be some ways to find support and help. I would be happy to try again to facilitate a referral to a colleague in your area. An oncologist who trained with us at BIDMC is now practicing in the Miami area. Perhaps she could be helpful to you.
I am glad that you are getting another opinion and can only hope that you leave that appointment feeling much better. Please let me know.
8/30/2009 (12:42:48pm)Tags: questions comments how toComments: (0)
When I click on "Ask a question" I'm directed to this comment box. Is this box meant for questions. I'm puzzled about this and wondered if I missed something. Thanks, Nalini
Hi Nalini,
Yes, to ask a question, you click on the "Ask a Question" link which takes you to a box in which to write a comment. For our purposes, comments and questions are the same.
I agree this is somewhat confusing, but it is what is possible within the context of the technology.
