Ask Hester

Aplastic Anemia Conference

2/4/2011 (11:18:07am)Tags: noneComments: (50)

I am with the Aplastic Anemia & MDS International Foundation. We are holding a FREE conference in Boston May 14th at the Westin Waltham Boston for Patients, Family Members, Caregives, Veterans and Health Professtional dealing with Aplastic Anemia, MDS and PNH. Who should I contact to get the info out. Our Director of Patient Services will be going a marketing visit Feb 18th as well and would like to meet with someone as appropriate to get the word out. Wendy Ashburn 240-776-4237 (direct) 1-855-595-7155 (toll free) wendy.ashburn@tggroup.com

Thanks for writing. This sounds like an excellent opportunity. My suggestion would be that you start with one of my colleagues who works with the Hem Malignancy Group. Please email either Marcie Saganov or Linda Goorin, and feel free to use my name.

msaganov@bidmc.harvard.edu

lgoorin1@bidmc.harvard.edu

After Lung Cancer

2/4/2011 (11:13:20am)Tags: lung cancer breathing SOBComments: (31)

I HAD LUNG CANCER SURGERY IN 2009 .WITH ADDITIONAL CHEMO I'M CANCER FREE . THEY HAD TO REMOVE THE LOWER PART OF MY RIGHT LOBE AND PART OF THE NEXT. MY BREATHING HAS BEEN A STRAIN ,I HAVE A HARD TIME DOING ANYTHING, I'M ALWAYS GASPING FOR AIR. THE DOCTOR HERE ARE AT A LOSS . PLEASE GIVE ME SOME ADVICE.. THANK YOU

by TERRY

Terry,

Thank you for your note, and I am delighted that your cancer health is good. However, it sounds as though you have been left with a big daily problem, and I imagine this really makes a negative difference in your quality of life. Since I am not a doctor, I have only a couple of general suggestions along with the strong advice that you continue to advocate for yourself by asking questions, meeting with other specialists, and insisting that your voice be heard.

If your doctor (? surgeon or medical oncologist or radiation oncologist or PCP?) has not been too helpful, you certainly should begin by meeting with the others who were involved in your care. You might also ask about a referral to a respiratory therapist; s/he is very likely to be helpful.

Good luck and please let me know how this goes.

Thyroid Cancer

12/7/2010 (11:55:33am)Tags: noneComments: (11)

I was recently diagnosed with thyroid Cancer. I have undergone total thyroidectomy and need to schedule residual ablation. The problem is I have no idea what treatment facilities in Boston have teams that specialize in ThyCa. I am uncomfortable with going ahead with treatment with my current endo who predominately treats Diabetes.. Any reccommendations would be appreciated.

First, I am sorry that you have to deal witht this. As you know, thyroid cancer is different from most other cancers in the ways it is treated and by whom it is treated. At BIDMC and other academic medical centers, tyroid cancer patients are cared for by  endochronoligists, not by medical oncologists. This means that the traditional team of a surgeon, medical oncologist, radiation oncologist, and other specialists as needed is not relevant.

My best suggestion would be to call the Department of Endochrinology and ask who most commonly treats patients with thyroid cancer. The number is: 617 735-3324

Colonscopy Follow Up

11/2/2010 (2:19:35pm)Tags: colonscopy carcinoid positive nodesComments: (18)

Reposting: forgot to include my emai address initially: A 1 cm carcinoid tumor was found in my terminal ileum during a routine colonscopy. A resection was performed to remove the tumor et al. The pathology came back that 2 of 18 lymphnodes tested positive. The surgeon has told me that I am "cured" and that no further follow-up is required. Help! This doesn't make sense. I am only 45 years old and hope that I have several more years ahead of me - how do I know that I am "cancer-free"? Are there other tests that I should consider? I live in Rhode Island and several fiends have suggested that I go to "Boston", but I don't know what to do. Can you offer any suggestions where I can go for advice and/or direction? Thank you Gerri

Dear Gerri,

Thank you for writing, and I appreciate your worries. Let's hope that you have many healthy years ahead! Carcinoid is a fairly rare diagnosis and one that is often not treated in the same ways as many more common cancers. A good place to start would be this website from the Carcinoid Cancer Foundation: http://www.carcinoid.org/index.shtml

It may well be that you really don't need any more treatment, but, at the least, you need reassurance that is the best decision. Yes, you could schedule an appointment with a medical oncologist here who could talk about the situation and possible treatment options with you. You might call Dr. Rebecca Miksad (617 667-4827) or Dr. Michael Goldstein (617 667-4852) to begin. Explain the situation to the administrative assistant. If they are not the right doctors, she can direct you to the best person and facilitate that appointment. If you have any trouble with this, please let me know: hhill@bidmc.harvard.edu

New gastric cancer and Possible Surgery

10/27/2010 (1:04:47pm)Tags: surgery gastric cancerComments: (20)

My friend was diagnosed with gastric cancer T2N1, we have been referred to a surgeon at BI but were told it would be to see if the surgeon will take the case. What exactly does that mean and what is the next step if the surgeon does not "take the case". The initial diagnosis was in September, we are coming on to November with no treatment, no labs, no concern for pain ot discomfort he may have. Obviously, this is all new to us and I am concerned about time lines, etc. Any insights you could shed on the process would be greatly appreciated.

No wonder you and your friend are worried! The wait must seem endless and the anxiety of not knowing the plan is even worse. I expect that the "take the case" referes to whether the surgeon feels it is within his/her area of expertise. You would not want someone doing the surgery who didn't feel completely competent and confident about it!

If it does not feel like the right match, the surgeon will make another recommendation and, hopefully, help you see his colleague very quickly. You certainly can strongly requet that this happens, but I am hoping it would be automatic.

If this all still seems slow and not so patient-friendly, feel free to call one of BIDMC's patient advocates/representatives at 617 632-0364.

Worrying about melanoma

10/5/2010 (12:30:39pm)Tags: melanoma lytic lesions worry anxiery recurrenceComments: (34)

I had a cancerous melanoma removed on my shoulder (mohs). After an auto accident three days ago, I was told that I have new lytic lesions in my calvera. What does this mean? My head has been itching for the last couple of months. Is this a symptom? How serious is this? Is it possible to operate or are there other treatments available???

by brenda

Brenda,

Thank you for writing, and I hope that you have been able to have a conversation with your doctor. Any of us who have had cancer know that we always worry about a possible recurrence, and hearing that you have some changes (on x-ray or bone scans, I am guessing, from your description) is scary. Clearly, I don't know whether these new lytic lesions in your bones are a recurrence of your earlier melanoma or something else--and maybe something quite harmless. That is the "talk to your doctor right away" part of my response.  Hopefully, you can quickly get more information and, hopefully, some reassurance. The absence of information is always very difficult. We do better with facts, almost whatever they are. With knowledge, we can begin to prepare to do whatever is necessary and not just worry.

If this does turn out to a recurrence of the melanoma, there most certainly are treatments. In most instances, surgery is not used to recurrent cancer (although there are exceptions to that). There are a number of other possibilities, including radiation therapy and drug therapies. Please let me know what happens and push, if necessary, to talk soon with your doctor. I am not advocating a quick conversation because I think this is something dire, but because I know you will feel better once you feel connected and cared for.

You can email me at: hhill@bidmc.harvard.edu

Rules for Patients in Isolation

8/23/2010 (2:01:40pm)Tags: noneComments: (13)

I was just wondering if it could be published on this BIDMC's website, what kind of things are allowable for patients to have in isolation? Or does it vary from individual to individual?

Thank you for this excellent question. It is impossible to give a very helpful answer as the rules do vary depending on the reason for the isolation. For example, someone who is receiving certain kinds of radiation therapy that are delivered internally and left in place for several days will be in an isolation room to protect others. In that case, there are rules about how long a nurse or other caregiver can stay in the room and how often they can visit. If someone is in isolation because of a contagious illness, they goal, again, is to protect other people from infection.

On the other hand, often someone is in isolation to protect them. That is, the focus is protecting the patient from other people or other sources of possible trouble. If someone receiving chemotherapy is admitted with a low white blood count and a high fever, they are put on isolation and receive IV antibiotics. Visitors are asked to, at least, wash their hands and, if they are at all worried about a cold or other malady, to wear a mask or, better, stay away.

If you are thinking about someone who is in isolation for an extended period around a bone marrow transplant, the rules are more strict and extensive. Even then, however, it depends on what kind of transplant the person is receiving. Generally, however, they are not allowed any flowers, plants, fresh foods. Things brought in from home may need to be laundered or wiped down.

All of this amounts to the usual recommendation: If you know that you or a family member is going to be in isolation, ask your doctor about the rules for the particular situation.

And good luck.

Thanks

8/10/2010 (12:59:11pm)Tags: noneComments: (46)

This is such a great resource that you are providing and you give it away for free. I love seeing websites that understand the value of providing a quality resource for free. Free Diet Plans, Yoga Resources It’s the old what goes around comes around routine.

Thank you so much for this nice comment. As you may already know, I write a daily blog, Living with Breast Cancer, that "gives away" all kinds of information related to new studies, research, treatments, psychosocial issues, etc. Here is the link:

http://bidmc.org/YourHealth/BIDMCInteractive/Blogs/LivingwithBreastCancer.aspx

Nipple Sparing Mastectomy

8/4/2010 (3:52:46pm)Tags: noneComments: (58)

 Can a plastic surgeon save the nipple during breast reconstruction?

Thank you for this question that often comes up when women are considering reconstruction. The short answer is that many surgeons ae worried about leaving the natural nipple because of the possibility of leaving cancer cells behind. Here is an entry that I made a few weeks ago in my daily blog, Living with Breast Cancer, about this very topic. I am first giving you a link to that blog because you might be interested in other topics that are addressed there, too

http://bidmc.org/YourHealth/BIDMCInteractive/Blogs/LivingwithBreastCancer.aspx

It seems obvious that one of the more difficult parts of breast reconstruction is creating a new and natural-looking nipple and arerola. Women sometimes wonder about the possibility of a mastectomy that spares the nipple. Here is a brief interview with Dr. Lisa Newman from the University of Michigan Medical Center about this surgery:

From MedscapeCME Oncology > Ask the Experts About Breast Cancer 

Question 

My patient is a 35-year-old woman with a clinical stage I left breast cancer. She has a strong family history of breast  cancer and is considering bilateral prophylactic mastectomy with immediate reconstruction. She has asked about  nipple-sparing mastectomy. Is this a safe approach, either for the therapeutic or the prophylactic mastectomy? 

Response from Lisa A. Newman, MD, MPH 

Professor of Surgery; Director, Breast Care Center, University of Michigan, Ann Arbor 

Reports of nipple-sparing mastectomy are appearing more frequently in the published medical literature, with most  groups suggesting that the procedure is not only technically feasible, but also oncologically safe. However, it must be  strongly emphasized that the conventional mastectomy, which entails sacrifice of the nipple-areolar skin, is still widely  considered to be the gold standard procedure for patients requiring mastectomy for either cancer treatment or risk  reduction. Studies of nipple-sparing mastectomy have been retrospective in nature with variable selection criteria, 

including mixed samples of patients undergoing the procedure for prophylaxis or treatment; the patient follow-up intervals have been relatively brief. 

Nipple-Sparing Mastectomy With Breast Reconstruction 

Lisa A. Newman, MD, MPH 

Posted: 06/25/2010

Chemo and Cardiac Risks/Damage

5/20/2010 (4:20:14pm)Tags: chemo cardiac CHF heartComments: (24)

Hi, Hester, I have a question about the heart side effects of CA for breast cancer treatment. I have some literature for a research study comparing this set of drugs with another drug. Under the possible side effects for CA it lists a 25% chance of Heart Damage (not explained) and also a separate entry for Congestive Heart Failure, which is explained as a decrease in the heart's ability to pump effectively, which may lead to shortness of breath. I am a newly diagnosed breast cancer patient, trying to decide if I should do the standard chemo treatment, which includes this drug combo. This 25% figure seems horrifically high, but my doctor, who gave me this literature, said that this is based on old data, when people were given a much higher dose. What is the truth? How high is the heart damage/congestive heart failure risk? Also, what exactly do both of these mean (and are they different?) And how serious are they? What is the likelihood that they would be fatal? The other question I have is that I am self-employed and need to figure out the likelihood that I can keep up my work load during 4 months of chemo. Generally, from your experience how likely is it that women can keep working full time? I am 59 years old and in generally good health. Thank you!

Thank you for writing and especially for these excellent questions. First, the chemotherapy and possible heart damage concerns. With the reminder that I am not a physician and that the best advice is always "Ask your doctor", I can tell you my understanding about these issues.

In the usual treatment of early breast cancer, there are two drugs that raise concerns about cardiac damage: adriamycin (part of the infamous CA) and herceptin that is used to treat her2 positive breast cancer. Since both agents can be problematic, they are not given together. This is why women who will need herceptin don't begin to receive it until they have completed the CA part of their chemotherapy. Herceptin can safely be delivered in combination with Taxol or several other chemo drugs. Before beginning treatment with either of these drugs, most oncologists order a heart test to be sure that your heart is strong and healthy at baseline. This often is an RVG, but is sometimes another procedure.

Having said that, my personal experience and observation of hundreds of women is that there very rarely is cardiac damage. The 25% does seem way high. I have known a few women who needed to stop or take a break from the presecribed year of herceptin. I have not known anyone who had permanant damage done by the adriamycin. There is a known safe lifetime limit of adria, and the standard adjuvant breast cancer therapy (CA) is well below that limit. Unless you have pre-existing cardiac issues, I truly don't think you need to worry about this. If you began to have troubles, you would know it, and they would stop/change the treatment. The most important thing, by far, is to appropriately treat your breast cancer.

Re the work question: The sweeping response is: "Like everything else, everyone is different, and it is impossible to promise what any one woman's reactions will be." In my experience, there is huge variability in what women choose to do about work. There are people whose work life is very stressful or who feel that they are constantly exposed to every possible cold, flu, or virus (e.g. nursery school teachers) or whose jobs have big physical demands (e.g.construction workers) who decide to take a leave during treatment. There are more people who opt to keep working, and it is best when you have some flexibility re your schedule. Being self-employed, you must have big demands, but a great deal of flexibility and freedom in how you schedule many parts of your job. Clearly, you will need to take time off the day of each chemotherapy infusion. It is predictable when you will feel badly (IF you feel badly): days 3, 4, and maybe a few more. Meaning: if you are treated on Monday, the drugs that accompany the chemo keep you feeling well (and maybe hyped up/let's clean all the closets well if decadron, a steroid, is one of the anti-nausea drugs used) on that day and on Tuesday. If you feel badly (tired, nauseated,headachey), it is likely to be on Wednesday and Thursday, maybe persisting a few days longer. The other common side effect is from Neulasta which is an injection given 24 hours after chemo if you are receiving Dose Dense (every 2 weeks) treatment and in some other special situations. Some women feel minor to pretty bad bone aches and pains from the Neulasta.

It is useful to understand the likely side effect calendar because you can then think about what works best in your schedule. Some women prefer to feel less well during the week and others find a week-end to be easier.

Good luck and please let me know what you decide. Remember, the immediate risk and known danger is your breast cancer. You need to receive appropriate treatment, and you will get through this.

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