Patient Perspective: Breast Cancer

Transcript

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00:13 --> 00:42Welcome to Yale Cancer Answers with doctors Anees Chagpar and Steven Gore. Yale Cancer Answers features the latest information on cancer care by welcoming oncologists and specialists who are on the forefront of the battle to fight cancer. This week, it is a patient perspective on breast cancer with breast cancer survivor, Barbara Beitch, and Dr. Chagpar, a Professor of Surgery at the Yale School of Medicine.
00:42 --> 00:53<vChagpar>Barbara maybe we can start off by you telling us a little bit about yourself and how everything started. Once upon a time, I was perfectly well and then...
00:53 --> 01:19<vBeitch>Okay. I am 80 years old, a retired teacher, researcher. I am a biologist. Jumping to cancer, I have a family history of all sorts of cancer including my mother's breast cancer. So, cancer has always been on the back of my mind, but I tried to keep it in the back.
01:19 --> 01:23<vChagpar> Understandable. And so, how did things start for you?
01:23 --> 02:22<vBeitch>Well, I had been going twice a year for imaging that involves once a year mammogram and once a year, I think MRI, and they alternated every 6 months so that I was always seen because I had lumpy breasts and many cysts. And so a self-exam was rather challenging for me. So, I had gone for my routine checkup and I felt so confident that it was going to be a nothing that I even told Richard, my husband, that he did not need to come with me. And to my surprise, as I recall, this was a year and a half ago, the mammogram did not show anything different from the previous time, but the ultrasound showed a very tiny lump that they were concerned about, a mass.
02:22 --> 02:23<vChagpar>And then, what happened?
02:23 --> 04:57<vBeitch>Well, we scheduled further imaging and biopsies, and I do not remember the exact order of it, but they had to use ultrasound-guided needle biopsies because it was so small. And when they finally did find it, they took I guess on the order of a dozen little plugs of tissue in the area where they were pretty sure the mass in question was located and then that got sent off to pathology and showed that, yes indeed I did have breast cancer. And I forgot to mention, about 2 years earlier than that, in 2016, I also had a small lump in the same breast but apparently of different origin, and it was called DCIS, ductal carcinoima in situ. So, this was a second bout with my breasts. I had also had ovarian cancer, this is going back in history now 10 years earlier. In any case, the lump turned out to be positive and I met with Dr. Chagpar with whom I am talking today and we planned surgery. And the options at the time were to do nothing, which was rather untenable or to do a lumpectomy since I had already had a partial mastectomy 2 years earlier and there was not in my mind a whole lot of breast left. I opted for another option which was a mastectomy, and then there were so many choices. The next choice was to just have the breast tissue removed, the whole breast and do nothing further or to do some sort of a reconstruction. I opted for the reconstruction and there I had another choice, which was either a gel implant or I think a saline salty water filled implant or the third choice was something I had only recently started reading up on, and it was called a DIEP flap surgery, which is an acronym for some sort of blood vessel.
04:57 --> 05:00<vChagpar> Deep inferior epigastric perforator flap.
05:00 --> 06:58<vBeitch>Right and you can see why I do not keep that in my conscious mind. And, in that procedure, they take tissue from your lower abdomen, fatty tissue or adipose tissue, and they transplant it to the breast right after the breast tissue has been removed that is after the mastectomy. I thought that sounded like the best option because I had already read that people who have the saline or the gel implant sometimes have problems with them, and this seemed to be a good idea taking my own tissue with an artery and vein to nourish it and putting it in the breast sounded like a great idea. So, at that point, we set up a procedure with Dr. Avraham also from Smilow and the plan was that while Dr. Chagpar did the mastectomy, Dr. Avraham and his colleague would be taking the fatty tissue from my abdomen and then when she was finished, they would get right in and they would match up the blood vessels with my own blood vessels under the breast tissue, hook it up and then put the breast tissue and take some of the skin from my abdomen, put it on my breast which amuses me to this day because it had a freckle from my when I used to sun bathe and then they would sew up the lower abdomen. They had made an incision from hip to hip. Is this okay to go into this much detail? So, they made an incision from hip to hip, sort of shaped like a football I guess, an ellipse. They then had to sew that up. So, where shall we go from here.
06:58 --> 07:21<vChagpar>Well, lets take a step back for a little bit. One of the first things you said is that you had been having imaging every 6 months with a mammogram alternating with an MRI. Now, most women get annual mammograms, why were you getting an MRI every 6 months as well?
07:21 --> 07:54<vBeitch>That is a really good question that I inadvertently flew over. Family history and my own personal history, there was breast cancer in several members of my family. I had had ovarian which was shown to be genetically linked to breast cancer and I had had the DCIS and I had difficult to interpret breast tissue, so for all those reasons, my gynecologist recommended that I have more frequent imaging.
07:54 --> 07:56<vChagpar>Did you ever had genetic testing?
07:56 --> 08:51<vBeitch>I did. I had tests for every single mutation that had been found in a research lab and at first, there were just the what are called the BRCA genes and I had tested for the 3 mutants they knew at that time, that was maybe 10 years ago and then by the time I went back to do further testing they had 23 different markers they were using and I tested negative for all those and proceeded to tell all family members everything so they would have that as part of the family history, but I also as a biologist know that there are all different kinds of ways to you can get cancer and the fact that the markers that were known all showed up negative, did not mean that there was some other factor or other genetic mutants that had not been found yet.
08:51 --> 09:08<vChagpar>Exactly right, exactly right. And so, tell us a little bit about going back in time just to fill in the gaps, tell us about your ovarian cancer and when that was first diagnosed and how that was treated and how you felt at that time and what happened since then?
09:08 --> 11:44<vBeitch>It was about 2005 I think and I was going for my regular breast check and my gynecologist said why do not you also do a test for ovarian cancer. I said alright, I did not think anything of it, I went in, I was anxious about the breast results and did not pay too much attention to the ovarian test that I was having. A young techie did the imaging, it is called a transvaginal ultrasound in which they put a probe in your vagina and they look through it to see if there are any unusual lumps. He said, ma'm you have a tumor as large as a cantaloupe, that was how my ovarian cancer was diagnosed. And I immediately set up an appointment with Dr. Peter Schwartz who is well known for his work over the years on ovarian cancer. He took one look at the results and he said we have to get you in for surgery right away, go off all blood thinners, which I did and they gave me I guess a little more than a week to do that and then I had my highly enlarged ovary removed and they also took some of the tissue from the abdomen and I should mention also, I forget what I was going to mention also, but it will come to me very soon. In any case, they sent the tissue off to pathology and the results, they stage it I, II, III, IV where IV is the worst and I is not as far developed, and I had stage IIc and it was rapidly growing which I assume was determined by typing that they do. And he said you are very lucky to here. If it is IIc and it was growing rapidly that means it would have metastasized out of the abdominal cavity very soon. So, we got you in time, stages III and IV are much more difficult to treat and we do not have a very good success rate at all. So, that was my ovarian cancer.
11:44 --> 12:00<vChagpar>So, you had been feeling perfectly fine, but your gynecologist said, maybe we should just check your ovaries given your family history and so on and so forth, and you went and that is how this was found early and treated?
12:00 --> 12:27<vBeitch>Yes and no. I think when my gynecologist did a vaginal exam, my previous visit, she felt something that felt a little unusual and she had mentioned to me why don't you go have this transvaginal ultrasound and I was waiting for some sort of a referral form and put it to the back of my mind, so some months passed. What else did you just ask?
12:27 --> 12:33<vChagpar>But nonetheless, you still were not having any major symptoms.
12:33 --> 13:55<vBeitch>No, I was, but I did not associate them with ovarian cancer. I felt 3 different symptoms lets say if I can reconstruct them. They did not seem related at all to me. One was frequency of need to urinate, and looking back on it, I had this large tumor that was pushing on my bladder, my urinary bladder. #2, I felt sort of a pulling in the back on one side of my vertebral column and that is the ligament that attaches the ovary to the connective tissue in the back, and it was pulling because of this distortion of organs in my body and the pulling on the enlarged ovary. The third symptom was that whenever I ate, if I ate a lot of food, I really felt uncomfortable and they were all so logical given this large mass in my abdomen, but I did not put them together, I did not even think to mention them to my internist those 3 separate things that might be related, but I became rather evangelical afterwards telling people those are 3 ways people can know that they should be looked at. There is a test called CA-125, and that will give you if it is very high, that will give you an indication that you might have ovarian cancer.
13:55 --> 14:18<vChagpar>Right, but certainly being aware of your body and symptoms, even if they do not seem to be anything that you would normally pay attention to, can be the first signs of some of the more silent cancers like ovarian cancer, but we are going to take a short break for a medical minute and learn more about your story with breast cancer right after we come back, stay tuned.
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15:17 --> 16:18<vChagpar>Welcome back to Yale Cancer Answers. This is Dr. Anees Chagpar, and I am joined tonight by my guest Barbara Beitch. We are discussing diagnosis and treatment for breast cancer and she was telling us just before the break about how she had some really vague symptoms that normally she would not pay much attention to, frequency of urination, feeling really full after a big meal, a little bit of pulling, all of which in retrospect may have been related to an ovarian cancer that was found thankfully fairly early with the use of a transvaginal ultrasound after her gynecologist had felt something a little bit funny on an exam. Points out that it really does pay to talk to your doctor about your symptoms, make sure that you go for those annual physical exams and follow through with tests that could help you to find cancer early. So, Barbara, after you went through the ovarian cancer, you had your surgery, they removed the ovary, did you require further treatment?
16:18 --> 17:28<vBeitch>No. Yes. It is so long ago, I really have to scratch my head. I had chemotherapy. I had 6 rounds of Taxol 3 weeks apart and the symptoms were minimized by the very kind and savvy nurses in the clinic at Smilow who helped me. They gave me I think some sort of cortisone or corticosteroids before and they made other suggestions for how I could minimize the symptoms afterwards and to tell them right away if I had nausea, vomiting. And I pretty much sailed through it other than losing all my hair, which I dealt with pretty well. I remember going for a cancer walk somewhere in the middle of my chemo and having to wear a hat which annoyed me, I hated having to wear hats, but other than that, I went about my life.
17:28 --> 17:45<vChagpar>And how did the diagnosis of getting ovarian cancer impact you? Was that a shocker, did it turn your life upside down or did you take it all in stride, tell us more about the emotional impact of that diagnosis.
17:45 --> 19:22<vBeitch>Well, that was back in my tough it all out years, I had had some deaths in the family, I had some other very challenging events that I had to deal with, I had had a rough childhood, all those things helped me to develop a really effective coat of armour. And so, I did not let my emotions get in at that time. I toughed it out. I had retired but I was very actively involved in many volunteer activities, I continued everything, I did not stop. I was determined that it would not effect my sexuality and it did not, and I have taught human sexuality and I am adamant about people allowing themselves to be sexual throughout their lives. So, that was not very much of a setback for me. So, I would not wear bikinis for a while because I had this big scar up my middle but that seems rather minor and inconsequential. I think the women who do have reproductive surgeries of any sort do have to examine their sexuality, sometimes it helps to have a therapist to help you get through it. It helps to have a supportive spouse which I have always been lucky to have.
19:22 --> 19:37<vChagpar>And so, you toughed out the ovarian cancer and got back to life as it otherwise was and carried on. And then, some years later, you were diagnosed with yet another cancer, tell us about that.
19:37 --> 21:07<vBeitch>Yes. This is the DCIS we are talking about, which means that it was cancerous tissue but confined within the duct, a milk duct of the breast. And they said, well you know, we can remove it with a lumpectomy and I always pictured the lumpectomy would take the lump, which I knew was very small plus a margin around it to be safe, and I figured well it is very small itself and the lump is not going to be very big and then when I woke up from the surgery I found that it was much bigger than I anticipated. And for that reason, I would be really happy if physicians would be really upfront and tell patients what could happen or what could be, I did not have enough information. I got used to it. I was not thrilled about it. My husband was wonderfully supportive and loving and helped me to keep from going crazy and it was okay. And the reason I think that it is hard for me to remember the details of the DCIS is that that was small league compared with my recent bout with carcinoma.
21:07 --> 21:53<vChagpar> Right. And so, after the DCIS which as you say is for all intents and purposes "fairly small league," in the sense that it is a precancer, it does not spread. In terms of the stage numbers that you were talking about, it is stage 0 for breast cancer, but still oftentimes we recommend that people have radiation after a lumpectomy or that they take a pill if it is fed by estrogen, were you offered any of those things, did you choose to take them, did you think about that, did you think that was overkill, tell us about that whole thought process.
21:53 --> 23:09<vBeitch>I remember being offered them, I remember talking with a radiologist. The point that I remember most clearly is if we do radiation on that breast, if you ever have cancer again in that breast, we will not be able to use that tool, it is kind of a one-shot deal. Knowing that I spend my life waiting for the other shoe to drop in terms of cancer, breast cancer in particular, I chose not to have the radiation and to be honest, I do not remember why I chose not to have the chemo, but I do not think I did. Oh! I know why I did not take the pill. It was what was it at that time that they were giving , yeah tamoxifen. So, of course, I went to my scientist bible and I went reading up on side effects of tamoxifen and because I did not see myself as a really good candidate, I do not remember now exactly why, it may have to do with my cardiovascular family history. I did not like the side effects. So, I decided to say no thank you to those two choices.
23:09 --> 24:13<vChagpar>Right. And you know, a lot of people, I should not say a lot, but some people will choose that, especially the idea that radiation is a one-shot deal except for the fact that it reduces the risk of the cancer coming back, and the pill similarly and while yes it does have side effects, particularly in terms of cardiovascular risks, sometimes those risks can be mitigated by other things. So, if a pill for example increases your risk of clotting, you can take things that help your blood to be thin. If a pill causes your bones to thin, you can take bone building medications, but I understand completely how, you know, you are thinking this is a precancer, the surgery got it, they took a lot of tissue, they got clear margins, you know, the chances of this thing coming back is still probably pretty small and then what happened?
24:13 --> 28:52<vBeitch>And then it came back. Well, I do not think it came back from what you said and I think other people said in the field that this was a new cancer, independent of the DCIS, it did come back and I did choose all the guns I could. I saw Dr. DiGiovanna and he was really very, very helpful. We communicated very well, he is an MD PhD and so, we could kind of talk and I liked that. He waited for the results of the markers on the cells and these are receptors that tell you how sensitive that tumor was to 3 different kinds of growth factors or cancer stimulating factors, one of them estrogen, one of them herceptin and the third one is some sort of a progesterine. Mine came out positive and at first I thought that was horrible, positive markers and I assumed that that would be the case anywhere in either of my breasts. But then, he said, no, no, no the fact that they are positive means that we can use some of our other arsenal and we can treat them. So, as a result, part of my chemotherapy was herceptin drug that blocked that site. So, that was good and another part of my treatment is an aromatase inhibitor and that is a drug that converts male hormone to female hormone in the adrenal gland. So, even though I did not have an ovary, I was still producing some estrogen and they wanted to minimize the estrogen in my body. I will be on this aromatase inhibitor, it is called Letrozole for 5 years total. I have passed the one-year mark and I can tell you of all the symptoms that I knew were possible and I am keeping a check on everything. I have echocardiograms regularly, I see an oncology cardiovascular nurse who has been wonderful, Jessica Carviello, has been helpful. And we monitor my cardiovascular system and it is in great shape. The one thing that I did not dodge the bullet on with the Letrozole is that it can act on epithelium on moist tissue, such as the vaginal tissue. So, what I now and have to deal with is vaginal dryness and pain, which are particularly pronounced during intercourse. At this point, I have 4 different gels, creams and a suppository that I use to fight that off and it is pretty successful, not a 100% but there is a wonderful clinic at Smilow run by Mary Jane Minkin and her staff. The staff are wonderful, one member of the staff is a psychologist or a social worker specializing in breast cancer, and I was offered her services which I took gladly and asked if my husband could participate and she said yes, and so she is now off doing her own research in her own practice, she helped us enormously to get through the ups and downs, to get through the periods where I thought I was losing my cognitive ability, you know the expression chemo brain, and my brain is pretty important to me, so it was one thing I absolutely did not want to lose. So, the more stressed out I would get about it, the more it came up in conversation, the worse it was and it is sort of a feedback, you are anxious about trying to remember a word and therefore you cannot remember it or it seems that way. I got so stressed about it that I went for testing and I had a complete battery of cognitive thinking tests and ended up "doing very well for a woman your age."
28:52 --> 29:14Barbara Beitch is a breast cancer survivor. If you have questions, the address is canceranswers@yale.edu and past editions of the program are available in audio and written form at YaleCancerCenter.org. We hope you will join us next week to learn more about the fight against cancer here on Connecticut Public Radio.

Information

Patient Perspective: Breast Cancer with guest Barbara Beitch October 20, 2019 Yale Cancer Center visit: http://www.yalecancercenter.org email: canceranswers@yale.edu call: 203-785-4095