Ask Hester
8/26/2009 (12:06:22pm)Tags: ask hester support questionsComments: (22)
Do you have questions about your treatment, your recovery, managing hair loss, worries about your children, your spouse, your friends, job concerns, or sexual issues? If you are a new oncology patient at BIDMC, are you wondering about what to expect here, where to park, hotel or lodging choices? Would you like to be connected with someone else who has been treated here for a similar cancer? Whatever you are wondering about: here is your chance to ask the expert.
Hester Hill Schnipper, LICSW, BCD, OSW-C is the Program Manager of Oncology Social Work at BIDMC. In addition to thirty years experience as an oncology social worker, she has been treated twice for breast cancer at BIDMC and brings a personal history and empathy to her work. She looks forward to answering your non-medical questions that may help you manage your particular cancer experience and promises a quick response to your concerns.
Check back often, as Hester will be posting each question and answer as a new entry for the blog. If you have a question on a specific topic, try searching using the "Search Blogs" box on the right hand side of your screen to see if a similiar question has already been asked.
This web site is not intended to serve as a replacement or substitute for your physician, for the medical advice of your physician, or the need for you to contact a physician regarding concerns or issues you may have regarding cancer treatment. The material and content contained in this web site are for general health information only.
If you require specific information about your personal medical condition, diagnosis, treatment options, a second opinion, assessment, evaluation, or any other health care service, we encourage you to consider making an appointment at the Cancer Center, or consult with your personal physician at your earliest opportunity.
This web site can be seen by the general public, so if you choose to submit a question that you would like to remain anonymous, do not use your real name.
When submitting a question for Hester, you only need to fill out the Name and Comment field. The 2nd field (Website) is not required and does not need to be filled out in order to ask a question.
8/26/2009 (8:50:53pm)Tags: noneComments: (0)
Hello Hester, I am a friend of Sandy Hewitt's, and she directed me to this website to take a look at what's being done to support Breast Cancer patients and survivors. Sandy and I worked together at Spaulding in Boston and on the Cape before she went to BIDMC. I first learned of you too many years ago through a friend , Sharyl Benovitz. I had connected directly with you in 1986-87 with my first Breast CA dx, and had a second occurance 2002. Mark Weinstein was my 1st surgeon; Mary Jane my 2nd. I remain grateful for the care they provided me. Just want to thank you for all you've done to promote the well-being of patients and survivors, to educate providers, and to foster and conduct BC research. Best wishes, Carol B. Levy
Carol,
Thank you so much for this note. Reading your message brings me many memories, too. I remember Sheryl with enormous affection; you may recall that she was one of our first Patient to Patient, Heart to Heart volunteers and was so helpful to many other women diagnosed with breast cancer. Reading Mark Weinstein's name is a special pleasure; he is still missed. Did you know that he and his wife were prize-winning ballroom dancers?
8/26/2009 (8:55:09pm)Tags: noneComments: (0)
Hi Hester, I'm excited to know of this new "column" of yours! I have now had my 5th Carboplatin/Gemcydamine chemotherapy treatment (11th counting original treatment). I have one more in early September. My question is: in your experience, how long does it usually take for the fatigue side-effect to go away? I'd like to hold off big travel plans till I can expect to feel quite good. Thanks. Jean Alonso
Hi Jean,
And thank you for the excellent question. The rule of thumb is that it takes at least as long as the total duration of treatment to feel really well again. Obviously, over those months, the curve is generally positive and in the direction of feeling better. Fatigue is usually the most persistent side effect, and a gradual return to pre-treatment energy levels can seem very slow.
I think that planning a trip is an excellent idea, and would guess that you will feel well enough to truly enjoy it 2-3 months after finishing chemotherapy. (even if you need a few naps)
8/26/2009 (8:59:20pm)Tags: noneComments: (0)
Wednesday, August 26, 2009 5:34 PM First, I agree that the font size in the boxes is definitely too small. Second, the heading is confusing. What if i don't have a website, but only have an email address? There is no place to insert an email address. There should be a box for that in the heading. Next, my question: Am I getting neurotic? For a while, I was OK about any little ache or pain in my breasts. Now, any time I feel a twing of discomfort (which might only be from a tight bra) I get worried about a recurrence. Don't tell me that this is irrational, because i know that it is. All I want to know is whether or not you, or other breast cancer survivors, have these same experiences. I have regular mammograms and MRI's, so I am being carefully monitored, but I still seem to worry any time that I feel discomfort or pressure in my breasts. Marcia Nalebuff
Great question, Marcia. First, as you well know, this is not neurotic. This is something real and potentially serious to worry about. Wish that I had the words to totally minimize your concerns; I don't. Here are the reminders that may help:
1. Pain or discomfort in the breast is rarely a symptom/sign of breast cancer. It is not on the list of things to worry about although occasionally a malignant tumor in the breast is pressing on a nerve so pain is a symptom. Rare but possible.
2. While we are all worrying, it really makes more sense to worry about pain in other parts of the body. If cancer does recur in the breast, or, if you ever have a second breast cancer, it is still very often curable. The real trouble comes from cancer that has spread to other parts of the body. (realize this is not entirely, or at all, comforting--just trying to minimize the breast-related worries)
8/26/2009 (9:05:05pm)Tags: noneComments: (0)
Why the obsession with having a "positive atttude"? I have a Stage III breast cancer, and my doctor expects me not to worry or ask him serious questions.
I love your question. Of course you are worried and of course you have serious questions for your doctor (and anyone else who will listen). Let me promise you that your attitude, positive, negative, surly, or frustrated, has zero to do with the course of your cancer. Of course, your outlook impacts your mood and the quality of your days, but it has nothing to do with the prognosis of your cancer. Promise.
8/26/2009 (9:08:49pm)Tags: noneComments: (0)
Hi Hester, This is a kind of cool extension of the Wednesday support group you lead at the BI. I prefer talking to people I know on line than strangers. So, I had a "ah ha" moment this week about my recovery and I was hoping you could help me capitalize on it. So here goes- During the recovery from chemo and some side effects I am dealing with I realized that I am always focusing on how far I have to go instead of how far I have come. The latter being much more beneficial. So how do you get yourself to recognized these positive benchmarks? Journaling, support groups? What do you suggest? Cheers, Natasha
Hi Natasha,
Great question and I wish I had a good answer. Obviously, different people have different styles, personalities, and outlooks. Having cancer is not going to change a "glass half empty" person into Mary Sunshine. It can help to identify this strategy, as you have, and focus on the positives when possible. (Isn't there a old song about Focus on the Positives, Minimize the Negatives?) Some women find it helpful to keep a notebook or journal in which they write 3 good things about each day. They can be small observations: I saw cardinals on the bird feeder or really enjoyed my morning coffee or laughed with a friend. The trick is paying attention. Noticing the good moments does help us remember them and balance the not so good times.
As you know, I am a huge fan of support groups and know that those friendships and understanding help more than almost anything else can. You have come a long way indeed.
8/27/2009 (10:57:28am)Tags: noneComments: (0)
Now that I am a 'survivor', I find my women friends do not want to hear ANYTHING that has to do with the C word... cancer. It makes me feel so alone - even among friends. Is this just a new reality I need to learn to accept or are there ways to help my friends be able to hear me and listen to me? Thanks !!!
Unfortunately, this is a very common problem and sorrow. It often seems that, by the time active treatment is done, our friends and family have exhausted their supply of empathy and energy to support us. Once we look well and "seem fine", it is back to normal for everyone else--often leaving us feeling quite alone.
Most women find that they do have to adjust their expectations of their friends and recognize this unpleasant reality. If you're lucky, you have one or two people who can continue to listen and can bear to hear your ongoing problems and worries. This is certainly one reason why many women join a support group after treatment or find others who have been through cancer. We understand each other and can always bear witness to the feelings.
8/27/2009 (1:47:39pm)Tags: Avastin Cardiac PacemakerComments: (0)
Hi Hester - you have sure been a wealth of compassionate care and information since I started searching the web for info. I am currently battling hard with a Gemzar/Avastin combo, and am mostly concerned about the possible effects of the Avastin on my heart. I have a pacemaker-defibrillator and have been healing from congestive heart failure caused by an arrythmia that developed while I was on Adria/Velcade. (I was stage IV right out of the box). My current onc isn't too concerned since treatment is in place and states the Avastin is an issue for folks who need to grow new blood vessels, which I don't. My heart monitoring is pretty much "You'll tell us if you're having a problem". I'm concerned about this. What do you think?
Thank you for your kind words and you raise some big worries. It does seem unfair to have to deal both with cancer and cardiac issues! I have known a few other women who had pacemakers that became a concern during breast radiation (and I certainly can't speak to all the complicated medical issues, but, in each case, there was a lot of discussion and gathering of expert opinions about the safest way to proceed)
I am guessing that your oncologist feels that the cancer is the larger risk to your health, and that cardiac function can be monitored and addressed if necessary. It is true that you are likely to know if you are having problems; there will be symtoms, and you know your body best. Having said that, if you have not had a consultation with a cardiologist who has lots of experience with cancer patients and cancer drugs, it would seem wise to do so.
8/28/2009 (9:41:29am)Tags: radiation tattoos pain radiation planningComments: (0)
Hi Hester, I have had a lumpectomy for my cancer and will be getting radiation therapy. I have met with a radiation oncologist to discuss the treatment and I am scheduled for a planning session next week. I was told that I would be getting tattooes at the appointment. I am afraid of needles and am worried about getting through this. How painful is it? How big are the tattooes? Any thoughts?
I am glad that you asked the question because I can be completely reassuring about this one. The tattoo part comes at the end of the planning session and marks the exact field (area) which will be radiated. Since the success and safety of the treatment depend on its being exactly the same each day, the tattoos are the markers that are used to line up the machines. They may also be important in the future. As you know, you cannot receive radiation to the same spot more than once, so if (hopefully not) you ever need radiation again in that general area, the tattoos would enable them to avoid the tissue that had previously been treated.
You will, naturally, feel the pin prick, but it is very fast and less painful than an injection (b/c it is so fast and there is not any sensation of something being injected into you). If you have any freckles on your chest, you will barely be able to distinguish the tattooes from them. That is, they are tiny freckle size. The color depends on the ink that they use; I have seen dark blue, black, and dark brown. (don't think you get a choice, but I suppose you could ask for sapphire :) )
Here are the more general caveats about radiation planning. If your arm is still stiff or sore from surgery, take a couple of Tylenol. You will have to lie totally still, with your arm above your head, for half an hour or longer. The people who do the planning are expert and kind, but they will be focused on the task and less on you as a person. It can feel dehumanizing and uncomfortable to lie there, with your breast exposed, while they are talking over you, using lots of technical terms and numbers, and eventually marking your body. Sometimes it helps to take an ipod and listen to music or just try to zone out.
Good luck. It won't be as bad as you fear. Promise.
8/28/2009 (2:00:20pm)Tags: mammograms dangerousComments: (0)
Hi Hester, Thanx for your answer to my last question. Here's another question about MAMMOGRAMS from an article on the Internet. What do you think about this? Is there any truth to this article? Would it be better/safer to have only MRI's? ============================================================================== "Don't let them squeeze the life out of you during a mammogram... Here's how it happens. The technician is trying to get good pictures, because she's afraid she'll be sued if she misses a tumor. So to get good pictures, she squeezes the heck out of the breast... But tell her to stop! Because all that squeezing can rupture internal tissue, including tumor tissue, which spreads the cancer. Any good doctor should know this! When I was in med school, we all had it drummed into our heads that breast lumps should be handled very gingerly during manual inspections. When mammograms first became all the rage, I published an article pointing this out and was promptly hooted down. But finally, a major medical journal is agreeing with me that breast compression 'could cause small tumors to burst open.' Don't let this happen..."
I love having an opportunity to smash an internet rumor (and this one is right up there with wearing deodorant causes breast cancer or blaming Johns Hopkins for long lists of things that cause cancer). No truth to it at all.
We all know, unfortunately, that mammograms are not perfect and will always miss some cancer, especially in younger women. However, they are the best routine screening test that we have, and we should all have one each year. Breast MRIs are recommended for women who are at high risk, for a number of reasons, and are scheduled also annually, but six months distant from the mammogram (that is, the woman then has some kind of screening test every six months).
