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(Announcer)
Major funding for Second Opinion is provided by the Blue Cross and Blue Shield Association; an Association of independent Blue Plans committed to better knowledge leading to better, more affordable health care for consumers.
[clock ticking]
[music]
(Dr. Peter Salgo)
Welcome to Second Opinion where each week our health care team solves a real medical mystery. When we close this file in half an hour from now, you'll not only know the outcome of this week's case, you'll be better able to take charge of your own health care. I'm your host Dr. Peter Salgo and our story today concerns Carla. Now you've already met our special guests who are joining our cast of regulars; Primary Care Physician Dr. Lou Papa and health reporter Christine Rogers. Nobody on the team, and I mean nobody knows what's in this case so why don't we get to work and start revealing some information about Carla. Let me see, Carla is a 41-year-old woman, she's Hispanic, and she's just finished 6 months of chemotherapy treatment following surgery for breast cancer. She's now in her oncologist's office for the first time since that treatment has stopped. What would be the purpose of that visit if she were seeing you?
(Dr. Jennifer Griggs)
We want to know, is she recovering from the treatment that she's been through? What questions have emerged now that she's done with treatment; it's a whole different part of life, other things come up, people want to know their prognosis. It's like their head comes out of the clouds. What happened to me? Why was I treated this way and not this way?
(Peter)
But is there any real biochemical or biophysical reason for this 6 month follow up do you think?
(Dr. Patricia Ganz)
Absolutely. Treatment and survivorship does not end at the end of treatment.
(Peter)
Susanna when you were seeing your oncologist after your breast cancer for the first time, what were you feeling at that first follow up visit?
(Susanna Morgan)
I was feeling relieved that I was finished with the chemotherapy and knowing that I was about to start radiation. I think too, one of the things that was important to me was to be looked at as a whole person and not just my medical statistics, but how I was doing emotionally and physically.
(Peter)
Let's look at what Carla and her oncologist have been through together. She had a 1.6 lesion, Carla in her left breast; she had one positive node and a history of having 2 family members who had had breast cancer. Now it doesn't say here if they're first relatives or not; all it says is family members. Her surgeon recommended a Unilateral Mastectomy; that is one breast, but Carla wanted a Bi-Lateral Mastectomy, she wanted both breasts removed and that's what she got. It was followed by 6 months of chemotherapy. Carla chose not to have reconstructive surgery at that time. Is this fairly standard treatment so far?
(Jennifer)
It is. It's a little bit more surgery than a lot of women at that age chose to have. With a small tumor, regardless of the nodes being positive, most women can have a breast preserving surgery. We know survival is just as good. Most women would have a Lumpectomy where the tumor is removed, the lymph nodes are assessed and then radiation therapy would be offered.
(Peter)
I think there's a sub text here, which I really want to make very clear. This was the patient's choice. You seem to be and you seem to be accepting this right along.
(Patricia)
Well people have to make these decisions. Probably she may have seen a loved one die. Often if they've seen someone else close to them die from breast cancer, they want to do everything they can to stay alive especially if they have young children. Those are big issues for them.
(Peter)
Did you, I'm sorry, go ahead.
(Christine Rogers)
I was curious because if you have patients and there is that genetic history in the family, I'm going to suspect they are very worried about that and that's why they make the option at this particular patient.
(Jennifer)
It depends. Some women want to get genetic testing and counseling before they have any surgery and for other people it's just too much information and they're going to wait until afterward.
(Dr. Peter Salgo)
Susanna did you feel you had some input as to what happened with you?
(Susanna)
Oh absolutely, yes; my, both from my oncologist and from my surgeon. They explained what the options were very thoroughly. I initially did have a Lumpectomy and my nodes removed, but with a later cancer I decided to have a Bi-Lateral Mastectomy with reconstruction, but it was very well explained to me that initially it was not better to have a Mastectomy for the long run than having a Lumpectomy.
(Peter)
But it was your choice; you were part of the decision making?
(Susanna)
Yes, very much so.
(Dr. Lou Papa)
The only thing I'm just wondering about is it was done so quickly. I mean it seems like a very, I mean most of the patient's that I've had that I've had Mastectomies; Bi-Lateral Mastectomies, they've gone through the process, they've gone through the treatment. I mean, it's not something you can put back and it's just, to make a decision like that, I'm just hoping that it was fully informed, it wasn't made in haste.
(Patricia)
I wanted to just also say that there are women who don't have the choice. We don't know what was Carla's situation, whether she went to a surgeon who said if you were my wife, you know, you're young, your family history is like this, you should have that.
(Lou)
Very powerful words.
(Patricia)
And I do agree with you that many women do have that regret. You know when you're told you have cancer you think oh my God I'm going to die. They don't know that the majority of women with breast cancer are going to survive and succumb to something else so it's an important decision.
(Peter)
But you know I want to bring up something because it was almost an unconscious moment in what you said. You said assuming the surgeon was male. What would I do if my wife had breast cancer? Does it make a difference in the health care team do you think? It's a provocative question, whether you're being advised by a man or a woman.
(Patricia)
There are many female surgeons who do breast surgery today and I think while we may think the women may be a little bit more sympathetic, they may equally be aggressive in terms of the surgery, but I think today most women will be offered a choice, at least in most states it's the law that you have to offer this.
(Pepper Schwartz)
Is someone empathetic, compassionate and who finds out, who are you?
(Patricia)
Yes.
(Pepper)
Anybody you feel who has done that kind of time with you and know who you are and to help you find out for yourself what's good for you, that's what you want. I don't think it matters after that.
(Peter)
Now you had reconstruction; I want to go back to this reconstruction issue. Why would a woman choose not to have immediate reconstruction?
(Pepper)
Well partly because of surgery. I mean, I think a lot of women, they go through a lot and they just don't want to go through anymore. It also I think would make a difference at what stage in their life they were and how much their breasts meant to them. For some women, it's their whole sexuality; they would feel de-feminized without their breasts. With other women, their breast has now become their enemy.
(Jennifer)
Sue had it; you had a double Mastectomy. How did you decide to do that?
(Susanna)
I regarded my medical team as a team and discussed it very thoroughly with all the persons involved. I'm very, very glad personally that I had the flap; tram flap reconstruction. It is not something to be undertaken lightly. It was an 8 1/2 hour surgery with 3 surgeons; 2 plastic surgeons and a general surgeon.
(Peter)
Alright let me tell you a little bit of what Carla was thinking at the time because at this visit I can tell you that Carla was also told that she would be taking Tamoxifen. What is Tamoxifen, why would her oncologist have started her on Tamoxifen now, 5 or 6 months after the end of her chemotherapy?
(Dr. Patricia Ganz)
Well it's a drug that is an anti-Estrogen that has been in use for about 30 years initially used to treat advanced breast cancer but was then shown to be useful in preventing breast cancer from coming back and because she did have one positive node, she is at some risk for this cancer to come back in the future. I'm assuming that the tumor must be Hormone Receptor Positive and that's probably why this is being discussed.
(Peter)
Does everybody get tested Jennifer for Hormone Receptors in the tumor?
(Jennifer)
Absolutely, in fact we're learning more and more about the quality of the testing matters, not just that you get tested, but the standards by which the pathology lab holds the testing quality. So that's another, it's actually an advance; something we've been doing for decades and decades we're now doing better. But the, I just wanted to add onto what Patty said. Carla's had both her breasts removed so we're not talking in her case about reducing her risk of a cancer coming back in the breast; we're worried about her whole system just like the chemotherapy.
(Patricia)
What are they?
(Dr. Peter Salgo)
Are there any other pharmacological potential here, any other drugs?
(Patricia)
Not for this woman.
(Dr. Jennifer Griggs)
Not for her; not for a pre-menopausal woman.
(Patricia)
What are the side effects?
(Jennifer)
Well many women have no side effects of Tamoxifen. Hot flashes can occur with Tamoxifen, but they do with Placebo, with sugar pills. Vaginal dryness, leg cramps, the hot flashes and sleep disturbance tend to be the worst things.
(Dr. Peter Salgo)
In addition to the Tamoxifen her oncologist recommended that she join a support group and at this point Carla decided not to join. Was that a bad move not to join a support group?
(Susanna)
Not necessarily. I think a lot of that depends on what kind of a support group your friends and family are. I had a tremendous group of loved people.
(Pepper)
And I have to say for the women I've know, they've uniformly felt that this was an important thing for them to have done; to be with other women who were actively in the same situation they were in because you can get a lot of love and support from people, but they're not in your shoes.
(Peter)
Carla's got some other questions for her oncologist other than the support group and one of them is, she's worried that from now on whenever she has an ache or a pain, it's a sign the cancer is coming back. She wants to know when on earth do I call my doctor.
(Jennifer)
It's a very common question. People don't want to be a pest and I tell them anything, well I've learned this from my patients, anything that's 5 days or more or that you need to call me about because if you call me and I say it sounds like a cold, you just made my day.
(Laughing)
(Jennifer)
So especially the first year, which is sometimes called the Tofu Year because every body stops eating anything that they enjoy, they stop eating red meat and chocolate; they just eat Tofu.
(Peter)
It's the year of magical thinking.
(Jennifer)
It's the year of magical thinking, but call us and reach us. About a third of our women actually come in before a scheduled visit or call because they need an extra level of comfort.
(Lou)
So where's the Primary Care doctor in all of this?
(Peter)
Funny you should ask this because I can tell you what Carla asked.
(Lou)
This is a regular thing that happens is a patient gets diagnosed with cancer and they vanish for months on end and you know granted I'm worried about the aches and pains that she has, but you know, as a Primary Care doc, is that ache a heart attack?
(Peter)
Well I'll tell you what Carla thought. Carla rather was told by her oncologist, look things are fine. From now on if you have an ache or a pain don't call me said her oncologist, call your Primary Care Physician. Is that a fair thing to do?
(Lou)
Absolutely.
(Christine Rogers)
I'm worried Carla might feel abandoned.
(Peter)
By her oncologist or by her Primary Care?
(Christine)
By her oncologist if that's what the oncologist said.
(Patricia)
Well most oncologists still follow their breast cancer patients for a long time, but I think the real issue is the communication back and forth between the Primary Care Physician and the oncologist.
(Lou)
That first appointment with the patient after they get through all their treatment is kind of like a reunion for the Primary Care doc and the patient and some of the discussions, at least that I have with the patient is some of these fears that they have.
(Patricia)
I think also Primary Care Physicians vary in their comfort. Some Primary Care Physicians feel, oh my God, you know, I don't know what to do when they have an ache or a pain. Should I get a bone scan? Should I do tumor markers or something like that? I find that sometimes the Primary Care Physicians overreact and then the patient gets anxious so the issue...
(Dr. Lou Papa)
Which is funny because from the Primary Care's perspective I find sometimes the oncologist overreacts.
(Dr. Patricia Ganz)
Yeah it can go both ways.
(Lou)
So I mean it's a dynamic that goes in both ways. The other issue that I have, I still have the rest of the patient to take care of.
(Patricia)
Yes.
(Dr. Peter Salgo)
Well I'll tell you Carla had some other questions. Carla wants to know if she can resume her old lifestyle and I'll give you some background here in the chart. Carla is an attorney, she's married, she has 3 children; they are aged 4 to 14. Family and friends have been helping her with cooking, cleaning and driving during her treatment and she's been working a reduced client load during her treatment, but now that all of this is done and she's done with the intensive phase as far as she can tell. She wants to go right back into being a full time working mother and a wife. And apparently, and the assumption I'm making here is without any help at all. Good idea? Bad idea?
(Patricia)
Well for many women, again it depends. I'd really ask Carla, is she tired, how is she pacing herself, has she begun to do any of these things because for many women they may take a year or more to get back to where they were before, and particularly if they've had chemotherapy, surgery, radiation and so forth so I think we have to have realistic expectations about what that recovery is going to be.
(Peter)
We're going to pause for just a second. We covered so much ground, it's really important just for a moment to see sort of where we are in all of this. After surgery an immediate therapy for breast cancer patients are likely to have a lot of emotional and physical healing to do. The effects of breast cancer and treatment are going to continue after the initial treatment ends and that's sort of what we're discussing at this point. Would you like to know a little bit more about what Carla is interested in? The question she really has is I got that part that it's going to go on for a long time after the initial treatment, but for how long? It's now 6 months later, she's back in her oncologist, her Primary Care Physician's office and she's in the Primary Care Physician's office for her annual exam. Now Lou if she were in your office, what would you be looking for a year out?
(Lou)
Well obviously I'm going to be examining her as a whole, so it's not just a matter of examining her for breast cancer. Specifically for her, I'll be checking her lymph nodes in her armpits or axilla, I'll be checking the scars even though she had the Mastectomy, I'll be checking the scars in the chest wall to make sure there are no local recurrence as they call it. I'll be checking, her abdominal examination, checking her organs; her liver to see if that's enlarged. I'll be asking about her appetite, asking if there's been weight loss, a lot of general questions that you ask, but that's some of the stuff that I'd be doing.
(Peter)
But you know that's all well and good. Here's what Carla asks. Now I've had breast cancer, wouldn't you please add to this routine in your office some blood test, some special cancer blood test I suppose. She asked for a chest x-ray, a bone scan, a liver scan and a mammogram. Lou are you going to get them?
(Lou)
It does happen.
(Peter)
She's been on the Internet hasn't she?
(Lou)
There are a couple ways to handle it. There's the very academic approach okay, where you say there's not much data to show that does any good at all. You can get all that stuff. Sometimes this is a cancer survivor and they are very afraid of it coming back and what very often can happen is even though you can be very academic about it, they're going to say he's not listening to me. I'm afraid. So I may bargain for something.
(Peter)
What are you going to bargain for?
(Lou)
Well it depends. It depends on whichever one they're stuck on.
(Patricia)
This is a frequent and recurring discussion because every time you see the patient they say, aren't you going to do some tests and I really am an evidence based physician as an oncologist, you know we define our treatments by the evidence really.
(Peter)
You told me you were an evidenced based physician.
(Patricia)
Yes.
(Dr. Peter Salgo)
What does the data show about early versus later intervention in systemic cancer?
(Patricia)
She's already had the early therapy and again if she was to have a recurrence, she's had all the appropriate therapies but the point is detecting it early in breast cancer is not going to make a difference. We went through 10 or 15 years ago the episode of high dose Chemotherapy with the idea that you might cure those women with metastatic disease. We know once it's metastatic, you're not going to be curing it and detecting it early is not going to make a difference.
(Peter)
Now Carla is concerned because, and again this is in the chart and she's mentioned this to her doctor that her periods have not returned since surgery, since chemo, on Tamoxifen and she's not having any sexual relationship at all. Is this related to her therapy? Is this related to her cancer? These are the questions she needs answered. What do you guys have to tell her about that?
(Dr. Patricia Ganz)
Well women who are over the age of 40 have an increasing likelihood of stopping their menstrual cycles as a result of the chemotherapy but in some ways in terms of being pre-menopausal and having breast cancer, it may be beneficial in terms of decreasing her risk of recurrence.
(Peter)
Pepper what is all this doing to her relationship do you think with her husband or her significant other?
(Pepper Schwartz) Oh gosh, there are so many things to choose from here. I mean, she could not be feeling well, she could be suffering some body image problems, she could feel that he doesn't really want her in the same way he used to and she could feel rejected, she could literally not be feeling sexual arousal or sexual drive or be interested or when touched feel arousal either because of psychological complications or perhaps because of the chemotherapy.
(Patricia)
There is also very old literature which I think is still sustained today of husband's fearing that they're going to hurt their wife. She's going through so much, why should I impose my need for sexual activity on her. I think even a loving, caring partner will feel, oh I can't add to this and then there's this disruption in the routine of sexual activity.
(Peter)
But that's kind of a disconnect right because sometimes the woman is wondering why won't he touch me and he's thinking that she doesn't want it because it will be too painful. How do you deal with that?
(Dr. Jennifer Griggs)
Exactly.
(Pepper)
Well you get some communication skills going here. I mean they've got to talk to each other, they've got to talk about their fears, their disappointments, and their changes with this, and it needs to be guided by a skillful person so that things said aren't things that can never be unsaid.
(Peter)
She asks her doctor for diet and all kinds of supplements. She wants advice. She says I'm trying to prevent the recurrence of cancer. She's already taking Ginger Root because she's heard that's a good idea, she's taking a few vitamins, although the chart doesn't specify what vitamins she's taking; she's read about them in the hopes of preventing recurrence of her cancer. Does any of this make sense? You want to answer this, be my guest.
(Patricia)
Well I think we would advocate for a prudent diet, you know with lots of fresh fruits and vegetables. Most women, we didn't hear about it and you were actually worried about weight loss, but weight gain is actually much more of a serious problem and actually women who go into menopause abruptly often will gain 10, 15, 20 pounds easily so resuming exercise which can be very positive in terms of mood and how one feels in terms of well being, weight loss, diet can give individuals a sense of control. We really don't try to advocate supplements and things like this because there are safety issues that we'd be concerned about.
(Peter)
Well let me ask you...
(Pepper)
When you're physically active and your getting fitter, you like yourself more, you feel more sexual, you feel more in control. It has huge benefits.
(Susanna)
I wanted to follow up on that because that was exactly my experience. I can remember, I normally exercise and during the time that I was having chemotherapy I stopped exercising and I had terrific fatigue for a couple days after the chemotherapy. My oncologist said to me, I'm going to tell you something you probably don't want to hear but what you really need to do is get back in your exercise program. That made all the difference in the world both in terms of level of energy and the feeling of control and competence.
(Dr. Lou Papa)
But I think that something that's very important is the exercise and the healthy diets are the issue. The Ginger Root, you know that stuff I have concern about just because there's not much evidence for that and even though we may not think it's harmful, we really don't know.
(Jennifer)
And they're not pure.
(Dr. Peter Salgo)
Well why don't we stop here for just a moment and sum up where we are because women have to work through issues related to breast cancer and they do it in different ways. The best thing that all women who have breast cancer can do is to take the same routine health maintenance steps recommended for all of us that Lou would recommend if almost any one of us went to Lou's office. Is that fair?
(Jennifer)
My only concern with this emphasis on what you do now is that the inverse is that somehow you might have caused your cancer so my patients always say what should I eat or do or not drink, they ask about alcohol and I give them a few pages of things that you might do, but in my text in bold it says this is not meant to imply that you caused your cancer and that's the sub text that somebody who has a recurrence wasn't doing something right and I think that sense of control, the flip side is guilt.
(Lou)
This is true of many diseases; if somebody has a heart attack, somebody has pneumonia, somebody has colitis or any disease, it's a reevaluation point and that's kind of the way I look at it with the patients. I don't necessarily say that you did this to yourself. I tell them this is an opportunity; you may even feel better now because you're going to be doing these things than you did beforehand.
(Peter)
Well it's funny about that because that's just what Carla did. She put herself on a good diet, she saw her PCP at regular intervals and it is now 5 years later with no evidence of recurrence. Her energy is back; she has had reconstructive surgery during this past 5 years. All of a sudden back in her PCP's office she's a little strange. By this I mean she says she's not sleeping, she's missed work, she's not interested in sex again and she feels very, very sluggish. All fairly non-specific, Lou what's going on? Are you afraid that these are signs of cancer again?
(Lou)
They could be I mean yeah that's one thing you worry about. They could be signs of any disease that anybody could get at any point; depression, thyroid disease, any of those things that go through my mind and that list is, you know is this a recurrence of her cancer?
(Peter)
Her Primary Care Physician asks sort of a non-directed question; what's up? She said well you know a good friend of mine, a 52-year-old co-worker, battling breast cancer for 3 years just died. You've seen this before haven't you?
(Jennifer)
Well this is what we do, I mean this is all we do is help people through these transitions.
(Peter)
So is guilt a big part of this? Is there a kind of survivor guilt here?
(Pepper)
Yes.
(Peter)
Is that's what's happening?
(Jennifer)
Tremendous. Patients are sometimes told they have a good cancer or if there's a kind of cancer to have, this is it and the first thing you do when you tell somebody that is you isolate them in this shell of guilt and they feel trivialized and that may actually be, her friend in her dying process may have said you're so lucky.
(Peter)
All right so the question she's got is why am I alive and my friend isn't? What do you tell her?
(Patricia)
Something that we don't have control over. As an oncologist you think, oh my goodness I contributed to the success or the failure of what happened to this person, but I think if we're honest, it's a disease with its own biology and we cannot predict the future. That sense of uncertainty and lack of control is something that the doctor has to be honest about with the patient; on the other hand, to live today and live forwardly thinking.
(Dr. Peter Salgo)
I don't want to leave our discussion, before we go back to something that you touched on which was this magic 5 year number. Alright we've been using 5 years, it's in the popular press, if I just get past 4 years 364 days plus 1, that's it it's all over; I'm cured. Yes, no, and where did that number come from anyway?
(Dr. Jennifer Griggs)
Well in many cancers that's true because very few people live 5 years so this is sort of the sad side of cancer is that most people with pancreas cancer or lung cancer don't live 5 years. In breast cancer most people are alive at 5 years which is one reason I picked it as a field; most of my patients will be alive at 5 years, but that means there are people living who can have a recurrence of a slow growing tumor and that hangs over people. False reassurance isn't helpful neither is if you make it to 5 years you're fine. I've had a patient at 6 years who said now I can begin to live my life at 6 years and she came in at year 7 and said I just wasted 6 years didn't I? She realized ...
(Patricia)
Jennifer I think also we shouldn't negate the fact that there are actually some women who still have a recurrence and can live with breast cancer even after recurrence as a chronic disease with pretty good quality of life.
(Jennifer)
That's right for decades.
(Peter)
Does it mean that cure is less important as a word than being able to live and deal with the disease as it goes on if it's a chronic disease?
(Patricia)
I think for us, you know our goal is to keep women disease free and then that means they don't have to go through other episodes of treatment. I think really what we want to do is maximize good quality of life off of any treatment if possible and minimize the side effects of the treatments that we do.
(Peter)
Alright let's pause for just a moment again. To point out that surveillance for lingering physical and emotional effects of breast cancer becomes part of a patient's life long routine. That does not mean that a patient can't live a full life and a good life, but it does mean that that's part of the health experience that you've got. With that I think we're going to have to leave this discussion. It's just been brilliant. Thank you all for being here. Thank you so much for sharing. Well it's been a trying time for you I know, but you're here and you look terrific.
(Susanna Morgan)
Thank you.
(Peter)
Thank you all for being here as well. I want to review a few points of information we really need to remember. After surgery and immediate therapy for breast cancer patients likely have a lot of emotional and physical healing to do. The effects of breast cancer and treatment will continue after the initial treatment ends. Women work through issues related to breast cancer in different ways. The best thing that a woman who has had breast cancer can do is to take the same routine health maintenance steps basically recommended for all of us. Surveillance for lingering physical and emotional effects of breast cancer becomes part of the patients life long routine, but remember this; that does not mean that you can't live a full and a good life after the diagnosis. And of course our final message is always the same; taking charge of your health means being informed and having honest communication with your doctor. I'm Dr. Peter Salgo and we'll see you next time for another Second Opinion.
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[clock ticking]
[music]
(Announcer)
Major funding for Second Opinion is provided by the Blue Cross and Blue Shield Association; an Association of independent Blue Plans committed to better knowledge leading to better, more affordable health care for consumers.
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