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01-01-2015, 04:35 PM
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#1
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Senior Member
Join Date: Dec 2014
Posts: 93
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Are blood tests really that important in follow up care?
Is it really that important to routinely get blood tests done every 3 months for a year or 2 after treatment or is it just a feel good thing? I am at the point where my office visits with my oncologist just don't create value for me. I have been given inconsistent information at what I consider were crucial times during my treatment. I just don't feel like my questions are respected and they give me standard feel good answers. How can you be told you are "high risk" and "don't worry, I don't think it will happen to you" in the same breath??
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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01-01-2015, 05:39 PM
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#2
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Senior Member
Join Date: Oct 2014
Posts: 293
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Re: Are blood tests really that important in follow up care?
As someone who is having to fight to get blood work done, I would consider them important. But that's me.
Have you told the doctor how they make you feel? Personally, I've always said that I would rather have a competent doctor than a compassionate one but when you're scared and confused you want to talk to someone who can talk you down from the ledge. You have a right to be heard and the doctor should respect that and answer your questions honestly. If they don't, you might want to consider finding a new oncologist to treat you.
I'm sorry you're having to deal with this and I hope it gets better for you.
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01-01-2015, 06:31 PM
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#3
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Senior Member
Join Date: Dec 2014
Posts: 93
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Re: Are blood tests really that important in follow up care?
Thank you for responding. I have had long discussions with my oncologist to no avail and even started asking around for another oncologist recommendation. That just made things worse for me. I can "stay" with him as long as I don't have to deal with him anymore. If I progress to stage 4, I will not want him as my oncologist. Are blood tests really that important?
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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01-01-2015, 07:11 PM
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#4
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Senior Member
Join Date: Oct 2014
Posts: 293
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Re: Are blood tests really that important in follow up care?
To be honest, I don't know. I've asked how we determine if there's a recurrence and the answer I've been given is when I become symptomatic. To me that's not an acceptable answer. From what I've gotten here, I'm not sure blood work would necessarily be off if there was a recurrence and my oncologist's nurse said they don't do tests for markers unless it spreads (not sure what blood work has been ordered for my next visit, just that they did add it to my schedule). One of the reasons I want blood work done is because I've been prescribed medication that can cause liver issues and higher cholesterol levels. To my knowledge I've never had any cholesterol issues (and I eat a mostly vegan diet now) but I have had liver issues in the past. I had the Epstein Barr Virus with mono in 2010 and again in 2011 and my liver function tests have been off since then (with the exception of - ironically - the last 4-8 weeks of chemo . . . they've since gone back up). Until now I've refused to take any medication that had the slightest chance of causing or aggravating liver issues but my fear of the cancer is greater than my fear of causing significant liver issues. I had been told that my PCP would need to do the follow up tests on that but considering it's the oncologist who prescribed the medication, I think she should be the one monitoring their impact on my body because at some point I may need to make a decision as to whether to continue on the medications and that discussion should be with the person who prescribed the drugs, in my opinion anyway. So that's why I want the blood work but I don't know in the big cancer picture if they're all that beneficial.
On a side note, your oncologist is a man? In my experience male doctors are less sympathetic to women's concerns than female doctors. They condescend and treat you like you're a silly girl for having any questions or concerns. As a result, any time I have a choice, I go with the female doctor. But again, that's just me.
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01-01-2015, 09:46 PM
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#5
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: Are blood tests really that important in follow up care?
I can tell you what my experience was and maybe you will want to see another oncologist. Mine is very proactive and always talks with me about things that I need to discuss. I was diagnosed stage IIB also and I have CT scans and blood work every 3 months for the first 2 years and from then for the next 3 years I would have had them every 6 months. I had a recurrence about 3 years out from final treatment. My blood works was completely normal but the CT Scan found a small tumor on my chest wall. It was caught very early and I had surgery, radiation and have been on Herceptin since then. I'm not sure why your onc is so different than mine, however, I think you might want to look for another one. Had I waited for symptoms with my recurrence it would probably have gone from a local recurrence to Stage IV. I don't think symptoms occur until well into the disease when there are mets to the lungs, brain,or bone. This is just my experience and each of us has to decide what works well for us. Keep in touch and let us know how things are going.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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01-01-2015, 10:58 PM
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#6
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Senior Member
Join Date: Dec 2014
Posts: 93
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Re: Are blood tests really that important in follow up care?
I tried to get rid of my oncologist and another doctor of mine had a fit. I really value this other doctor (and want to keep him)other than disagreeing about my oncologist (he referred me to this oncologist). If I get rid of this oncologist, I have to be prepared to also lose a great doctor who I credit for saving my life. He thinks I'm crazy for wanting a new doctor, but he gets treated completely different than I do. He doesn't understand.
Lucy, My liver enzymes are always low or under the low level limit. They tell me I am completely healthy.
So why don't I just quietly cancel my next appointment. They don't do anything anyways.
Dankini52, They won't give me any scans unless I have symptoms other than a yearly mammogram(I have dense breasts). I'm glad you caught yours early. This oncologist is not healthy for me. No one will listen to me.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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01-01-2015, 11:17 PM
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#7
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: Are blood tests really that important in follow up care?
What I believe is that you need to be your own best advocate in this process and choosing the right oncologist for you should be a personal decision of yours, not another physician. I doubt seriously that he would drop you as a patient because you change oncologists. Is this your primary care physician? I do know there are some great oncologists out there and I hope you are able to connect with someone who provides the kind of support and interaction you need as well as the care you desire. Wish I could be more help.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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01-02-2015, 12:39 AM
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#8
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Senior Member
Join Date: Dec 2014
Posts: 93
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Re: Are blood tests really that important in follow up care?
Thank you. I need to try again and get another oncologist. How do you find one that specializes in breast cancer? How do you research a doctor? The information I find on the web don't tell if they specialize in certain cancers. How do I find an oncologist that treats a lot of breast cancer patients? I asked the 2 people I know and trust that have cared for me and they highly recommend my current oncologist. My oncologist is suppose to be the best in the area for breast cancer. My experience with him has been horrifying and I was just stage 2 and only received the standard of care. I can't imagine letting him treat me for stage 4 if that happens. I also am scared of going through all the trouble to find another oncologist and I don't find what I am looking for. I'm tired and frustrated. I guess blood tests are not that important.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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01-02-2015, 12:46 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Are blood tests really that important in follow up care?
Hello Spitfire,
This is a difficult time for you. You've only recently been told you have cancer and gone through your treatment which can be very hard and can make you depressed. I believe you can be told you are "high risk" (because you are HER2+ and you need watching) and "don't worry, I don't think it will happen to you" (because most people with early cancer and with treatment survive and he believes you're on the path to survive) in the same breath? Some doctors just don't have the patience, training or time to talk and listen to patients. Maybe consider going to a psychologist who works with cancer patients or join a cancer support group. You already belong to this one so you can ask questions here but meeting some fellow travelers in person or talking to them on the phone might help more.
you can always go to another hospital and meet with another oncologist and see how you feel and get another opinion but don't mention the other doctor and how you feel about him, just say you want a second opinion.
They do the blood tests to be sure that your cancer markers don't start to go up steadily - they can go up and down but if they keep on a steady upward path, that's not so good. Also they like to keep an eye on your organs for any possible damage to them - maybe from the treatment or for other reasons.
Ask the nurses at the hospital what they think about this oncologist. Nurses know a lot about the people and their abilities.
I suspect you're depressed which is normal after the shock of cancer and you need a sympathetic ear to talk to and someone who has been through this journey.
You'll get through this
big hug and love
sarah
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Last edited by sarah; 01-02-2015 at 12:49 AM..
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01-02-2015, 04:59 AM
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#10
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Senior Member
Join Date: Oct 2014
Posts: 293
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Re: Are blood tests really that important in follow up care?
Is there a cancer center anywhere near where you live? If so, I'd start looking there. Also, I think I saw a thread on this board somewhere where people were giving shout outs to their doctors and medical facilities, maybe you can find something there. I don't think your doctor would dump you because you wanted a different oncologist, but if he would, maybe he's not the best doctor for you either. I agree with Dakini52, you have to be your own best advocate because no one has more invested in you than you. And you have to be comfortable with the care you're getting.
Good luck, keep us posted.
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01-02-2015, 06:12 AM
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#11
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Senior Member
Join Date: Dec 2014
Posts: 93
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Re: Are blood tests really that important in follow up care?
I have tried to find local support groups and have searched in this forum and others for info about my area. My doctor told me to stay off the internet and not listen to other women with breast cancer because every women is different and I should trust him because he has a lot of years experience. I never should have trusted him. I found out the hard way not to say anything negative about a doctor, no matter how true it is. Facts don't matter to certain people and they will attack you. I should have known better. But I am a truthful person. I'm already at the "best" cancer center in the area. I don't know how to find other nurses that work at different clinics to ask them. I have already exhausted my networking abilities. I am not depressed. I have valid reasons for wanting to change doctors. I love all my other doctors. At my appointments, I get 2 blood tests, they ask how I feel, listen to my lungs and give me a breast exam. I only find value in the blood tests, they comfort me. My other doctor doesn't even believe in follow up blood tests. I like to get them, but do not want to go to my oncologist. I know it is good to have a doctor especially now, but I don't want this doctor treating me, so why would I try to keep him, yet not want to go to him?
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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01-02-2015, 08:20 AM
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#12
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Senior Member
Join Date: Jul 2006
Posts: 463
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Re: Are blood tests really that important in follow up care?
Spitfire, this is a great discussion. It's clearly (as you have now said) about more than just blood tests. It's about how important (or not) our relationship with our providers is. For some, it's enough to know that our providers are competent, especially I think if we have plenty of support and resources elsewhere (which it doesn't sound like you have, in your area). For most though, we want to be recognized as individuals, and to be able to initiate discussions and ask questions that are taken seriously.
As with all things, we are each different, and a provider who is a great fit with one person may not be a good fit with another. When I was being treated, I was surprised to find people raving about an oncologist I disliked, and dissing my favorite one. Different strokes . . .
You're actually in a good place right now (nothing urgently needing attention) to do a little shopping. Most providers will schedule a "get-acquainted" appointment at no charge. Sort of a meet-and-greet sit-down where you can get an idea of their style, and see if you think they'd be a good match for you. I think to get off to the best start, you'd want to tell them what you want from a provider (rather than what you don't want, or have experienced negatively in the past). I know this is a daunting task, but you could look it as a project to be undertaken and completed in the next few months (even set a deadline). There's no need to notify your primary care doc and ruffle those feathers, at least not until you've made your choice. And it's hard to imagine such a good doc would drop you as a patient because you seek the care of a different specialist. I don't like that part!
As for how to find local oncologists who specialize in breast cancer -- that may depend upon how large an area you're in. Outside of large cities, there may not BE such an animal, for example. One place to start might be your surgeon? They are the ones who often make the initial referral. Imaging centers likewise. You can always just call the office(s) and ask if they have an oncologist on staff who does only breast cancer. They may not, but they may know of other practices that do.
As for word of mouth, nurses' recommendations, etc -- that can be a place to start, but as I've said -- someone who is a perfect match for one may not "click" with the next person. There's expertise and competence, and then there's personality and style -- two different sets of criteria.
Which brings me back to the "get acquainted" appointment. I've never done it, but know others who have. You don't bring all your records and go into great depth, but just spend a few minutes sort of interviewing and getting to know the provider. You might ask how many patients he/she has with issues that especially concern you. What they recommend for follow up. Etc.
Maybe others who have chosen an oncologist (initially, or in a change) this way can chime in and tell us more about how they accomplished it.
Debbie Laxague
PS: Now that I hear your full story (liver issues, local recurrence), your initial questions make more sense.
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01-02-2015, 11:27 AM
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#13
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: Are blood tests really that important in follow up care?
My tumor was found during a routine visit with my primary care physician. She referred me to Seattle Breast Center for tests. The test came back positive and I was referred to a group of several oncologists. Each onc provided a one page description of who they were and how they practiced. The one I chose, Dr. Lee, seemed to fit well with my personality and disposition so I chose him. I loved that they had a write up on each of them with their picture. It felt more personal than just selecting a name at random. It has worked well for me and I feel fortunate to have found Dr Lee. You could google oncologists in your area and see what kind of ratings they are given by existing patients. I have done that before and it seems to work well.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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01-02-2015, 11:30 AM
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#14
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Senior Member
Join Date: Oct 2014
Posts: 293
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Re: Are blood tests really that important in follow up care?
It's funny that you're oncologist told you not to go on the internet or seek support from others with breast cancer. Mine strongly encouraged it and gave me a listing of endorsed websites. My response was "No thank you, I'll get my information directly from you thank you very much." I initially was very (VERY) reluctant to register for this forum because, to be honest, some of the stories I saw when I first stopped by scared the crap out of me. But I do think it's good to talk to others who have been through it because they can provide support that your doctors or even your family can't because they understand what you're going through (the others try but they don't really get it).
Where do you live SpitFire? I get treated at MD Anderson in Houston and people from all over the world go there (I'm lucky enough to have it close by).
The other thing you might consider . . . can your primary care physician run the tests for you? Maybe tell him something like you don't want to "waste" the oncologist's time for something "so unimportant" and you'd like him to do them instead and see what he says. That way you're not dealing with someone who doesn't take you seriously and you're not stepping on the toes of the doctors you don't want to lose or offend and you still get the tests. I went to my PCP on Tuesday and asked her to run some tests that the oncologist said she wouldn't monitor (despite her prescribing the pill that caused me to need the monitoring) and my PCP ordered the tests. She agreed that the oncologist should do it but she wasn't going to have me not get the tests just because she didn't agree with the other doctor. Just a thought.
Oh and, meant to mention, my liver function tests run high - with the exception of the last few weeks of chemo. I found it ironic that they'd be normal when I was being infused with toxic chemicals on a weekly basis. :-O
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01-03-2015, 05:00 AM
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#15
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Senior Member
Join Date: Dec 2014
Posts: 93
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Re: Are blood tests really that important in follow up care?
Thank you for all your helpful information. I now have some different strategies to work with. I don't want to say where I live because I want a safe place to talk.
I spoke with my family doctor last fall about follow up care and he just said he only needed to see me once a year. He encouraged me to search the forums. I really like him. He is very helpful and smart. I was hoping he would take over. I didn't tell him what was going on with my oncologist. I learned that lesson the hard way. I am not going to tell anyone. We don't know many people here, I was diagnosed shortly after moving here. I got my family doctor during chemo.
I thought it was wise to get my information from my doctors too, but I got bad information from my oncologist. He was very irresponsible to me. Among other things that happened during chemo.
My good doctor offered to see me twice a year instead of the oncologist, but no blood tests. He wouldn't refer me to another oncologist and was very, very upset. So I would be without an oncologist and the good doctor mad at me. My husband and I were shocked at how the doctor reacted. My husband said that I better patch things up with my oncologist so I don't lose my good doctor. So I did the next time I saw him and then saw my good doctor and he was pleased. So I patched things up, but I never got my issues resolved. I have serious concerns.
That is a big sign that I need to change doctors. I even wake up at night terrified because if I needed an oncologist, I don't really have one. This is a problem that has not been solved. I think my sub conscious is trying to solve my problem. I try to tell myself that I don't really need one. What's the point in interviewing doctors? They are still going to do what they are going to do. Lots of people are good at first impressions, you can't tell character in an interview. My oncologist has said I could ask any question. That was not what I experienced. He blew me off every chance he got.
In my area all the oncologists know each other and work together or share offices. How could I find another doctor? This doctor is highly respected. They would ask me why I wanted to leave. What do I say? They will talk to each other. I need help explaining to people. It is easier to just not go to my oncologist, but if I go see my family doctor because of a concern, he would tell me to go see my oncologist. Then what do I do?
I tried to take care of this last year, but I failed. I thought it was an easy fix. I don't feel good knowing he is my oncologist. I don't know if I could respect and trust another oncologist after this one. I know they are out there, but I haven't had any luck even getting a referral.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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01-03-2015, 06:10 AM
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#16
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Are blood tests really that important in follow up care?
Even though you say that you don't think that you could respect and trust an oncologist, it is imp that you have one because if the cancer returns, you will have a lifelong relationship with them.
I would want to have this lined up before I have a recurrence. Being diagnosed with mets and all of the emotional/ psychological issues that come with it,is not a great time to start interviewing new Oncs to find one that is a good fit with you.
Of course, the odds are you will never become stage 4, but there is that risk that does exist .
I don't love my onc. He has no bedside manner. He is not encouraging. My friends refer to him as dr doom and gloom. But i stay with him because he answers my questions the best he can and treats me as a partner in my care.
I would figure out what your nonnegotiables are in your next onc and start meeting with some. I would ask how many stage 4 breast cancer patients they have, what is your philosophy in treating stage 4 patients, are you willing to try drugs off label for stage 4, etc.
Again, you may never become stage 4, but that is what you need the onc for, the worst case scenario.
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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01-03-2015, 06:52 AM
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#17
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Senior Member
Join Date: Apr 2014
Posts: 206
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Re: Are blood tests really that important in follow up care?
I have found in situations like this it can help to say there is a communication breakdown happening and that I am not comfortable talking to this person, and I really need an oncologist I can communicate with, so I urgently need someone else. You do the broken record thing, don't escalate or get louder or angry, just repeat yourself until they get it.
That way you are saying"This is not working, and I need someone else" without rubbishing the other person, and face is saved. It is also a no-blame position that is hard for anyone to argue with. Even if you have previously bared your soul with more info, you can drop back to this position now if you wish to.
You are the consumer, it is your choice, and your right to get the right person for you without feeling bad about it. It is a gut-feeling thing, often an emotional matter, and you need to be staunch to yourself and not feel you have to justify it.
Here in Australia we have breast care nurses who know the oncologists and surgeons by their work and by what they hear from other patients. And there are senior ward nurses in oncology and in breast surgery. If you rang and made an appointment to see a breast care nurse, and explained about the communication breakdown, and asked advice on who might be easier for you to talk with, who is gentle, respectful very experienced and really good, get several names and interview them.
Alternatively, use the forums. Create a new ID and go onto a number of cancer boards and ask about hospitals, oncologists and surgeons in your area. Then you can keep your safe place here, but still get the info from those who know.
About tests to screen for recurrences. My oncologist, a woman, says that research shows that doing tests does not improve survival rates. She also says that people get so anxious and wound up about having tests and scans it does more harm than good.
I found out that the C15-3 has both false negs (when it appears to be fine but there are metastases) and false positives (indicating a problem when there are no metastases, caused by some other factor). But it often rises significantly if metasteses are present, and shows them at least 6 months before a scan would show them. I told her I would like to have this particular cancer marker monitored so I felt we were keeping a finger on the pulse of what is happening out of sight. She asked what would I do if I had a reading of about 33 given that they see up to 30 as normal. I said I'd discuss it with her. She asked me to promise to tell her if I find myself getting nervous about having the blood test done. She has agreed to monitor this for me because I wanted it and convinced her that I will not be a worrywort about it.
So that is what we are up against: people panic about the tests as they approach them, they worry about test results that don't show any problems, and they end up in a worse state because of the tests.
Which I think is a bit of a cop-out by oncologists.
I think the answer is for oncologists to take responsibility for educating their patients to manage their underlying fears about having cancer that gets triggered at such times, and also to teach them how to make these tests useful not damaging. Or maybe this is a project for a psychologist, and maybe I should be working on it myself.
I do hope you can find the way to be assertive and get what you want without feeling like you are alienating everyone or finding it too hard and too upsetting. It really is a matter of the right person for you, and not every combination works. Be staunch, be persistent, and keep a smile on your face.
best of luck
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan 14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.
March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.
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01-03-2015, 09:11 AM
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#18
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Senior Member
Join Date: Jul 2006
Posts: 463
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Re: Are blood tests really that important in follow up care?
Argg. Just lost a post again. It was probably too long, anyway.
Spitfire, I hear and understand your reluctance to ruffle feathers. I tend to be like you. But many on this board have great skills at assertiveness in getting their needs met, and they do not worry about ruffling feathers to find the best solutions for themselves. I hope some of them will chime in with what they did, how they did it, and how well it worked for them.
It seems you have two choices. Decide to put up with what you've got (unsatisfactory relationship with current oncologist and an overly-reactionary primary care doc). Or set aside concerns about ruffling feathers and move forward with meeting other oncologists. LOTS of people change oncologists. Providers who are not okay with this are not good providers. Even within your current oncologist's practice, there may be another onc who would be a better fit for you. Maybe you could make your next follow-up appointment with a different one within the same practice, and see if it feels like a better fit? You may have to adopt an assertive (but polite) "do not take no for an answer" attitude.
Another option, again done very commonly, would be to make a one-time (for now) second opinion consult appointment at an NCI-designated Comprehensive Cancer Center (this may involve travel). You would frame it as a second opinion (not necessarily changing providers) to clarify follow-up strategies. They may not have any additional recommendations, but you'd gain peace of mind knowing you were doing exactly the right things at this point. Plus you'd have your foot in the door, IF you ever need their expertise again. You might also be able to get from them recommendations for providers in your area who are willing to work in a more collaborative and cooperative way.
We're all different. The years after treatment ends are hard for all of us, and we each take different approaches to work thru that time of adjustment. For me, I figured out early-on that the "check-up" visit with my onc was of little value to me. I knew that I'd pick up anything worrisome and act on it, almost certainly before the arbitrarily-timed appointment where I was given a cursory physical exam and asked about symptoms. Symptoms I'd already have reported if I had them. I had to have regular visits as part of the clinical trial I was in, but switched them over to my PCP after the first year. But that's just me. Many people see their oncologist regularly for many years and get great comfort from that approach. Again, your call -- we can offer suggestions but only you can make the decision that works best for you.
Keep us posted, we're rooting for a solution for you.
Debbie
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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01-03-2015, 10:29 AM
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#19
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Are blood tests really that important in follow up care?
Hello Spitfire,
I think both Jessica and Debbie have offered excellent advice. I think the idea of a new ID and checking for recommendations in the surrounding area of where you live is also a good idea.
I've changed radiologists and primary doctors. That's your right also.
You definitely need to find a "cancer buddy" - someone you can talk to on the phone. I assume you live in the USA so you're on a very different time zone to me or I'd say we could chat by phone. I know having someone I could talk to in those dark days helped me and is why I am part of a support group here where I live in order to try to help others who need it.
Have you tried reaching the American Cancer Society? Your local library may be able to help you research what you need to find regarding a new doctor. It can just be a "second opinion" until and unless you find the right one.
The good news is that your oncologist has done the right thing regarding your cancer and right now, you are ok.
Also know that you can always PM (private message) anyone on this board. Many people put where they live so you might notice someone who lives in your state.
Can you explain what bothers you about him? You've said he doesn't want you to look at the internet or join a support group - that first one is quite common with doctors, the second is unusual. Our group started with the blessing and support (space) of the cancer hospital.
Are there some questions you have that he hasn't answered? If so, what are they? Maybe someone here can answer them.
Can your husband speak for you? Could he say to the good doctor that he (your husband) is not pleased with the manner in which the oncologist is treating you and that he (your husband) would like you to consider seeing another doctor???
the nurses at this hospital should have some advice about another doctor, they know doctors well and know who's good and who's compassionate, etc.
You mustn't let this make you crazy. Get some sleep even if you have to take something to sleep for a while. Rest is important. Also exercise is important to cancer patients and it may help you mentally as well.
hugs
sarah
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01-05-2015, 01:09 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Are blood tests really that important in follow up care?
Hello,
Saw this in the New York Times and thought of you. Hope you can see it.
Doctor, Shut Up and Listen
By NIRMAL JOSHIJAN. 4, 2015
HARRISBURG, Pa. — BETSY came to Dr. Martin for a second — or rather, a sixth — opinion. Over a year, she had seen five other physicians for a “rapid heartbeat” and “feeling stressed.” After extensive testing, she had finally been referred for psychological counseling for an anxiety disorder.
The careful history Dr. Martin took revealed that Betsy was taking an over-the-counter weight loss product that contained ephedrine. (I have changed their names for privacy’s sake.) When she stopped taking the remedy, her symptoms also stopped. Asked why she hadn’t mentioned this information before, she said she’d “never been asked.” Until then, her providers would sooner order tests than take the time to talk with her about the problem.
Betsy’s case was fortunate; poor communication often has much worse consequences. A review of reports by the Joint Commission, a nonprofit that provides accreditation to health care organizations, found that communication failure (rather than a provider’s lack of technical skill) was at the root of over 70 percent of serious adverse health outcomes in hospitals.
A doctor’s ability to explain, listen and empathize has a profound impact on a patient’s care. Yet, as one survey found, two out of every three patients are discharged from the hospital without even knowing their diagnosis. Another study discovered that in over 60 percent of cases, patients misunderstood directions after a visit to their doctor’s office. And on average, physicians wait just 18 seconds before interrupting patients’ narratives of their symptoms. Evidently, we have a long way to go.
Three years ago, my colleagues and I started a program in Harrisburg designed to improve doctors’ communication with their patients. This large urban hospital system serves a city with a population of about 50,000, together with the surrounding metropolitan area of more than 550,000 people.
The hospital faces particular challenges: The city has a high poverty rate (32 percent, compared with the state average of 13 percent), and the metro area has a high rate of childhood obesity. Over all, nearly a third of people around Harrisburg are uninsured, compared with about one in 10 for the rest of Pennsylvania.
Our project started with a simple baseline assessment of how we as doctors communicated with our patients. Observation soon revealed that physicians introduced themselves on only about one in four occasions. And without an introduction, it’s no surprise that patients could correctly identify their physician only about a quarter of the time.
Brief, rushed physician encounters were common, with limited opportunity for questions. A lack of empathy was often apparent: In one instance, after a tearful patient had related the recent death of a loved one, the physician’s next sentence was: “How is your abdominal pain?”
We developed a physician-training program, which involved mock patient interviews and assessment from the actor role-playing the patient. Over 250 physicians were trained using this technique. We also arranged for a “physician coach” to sit in on real patient interviews and provide feedback.
Over the next two years, patient satisfaction with doctors, as measured by a standard questionnaire, moved the hospital’s predicted score up in national rankings by a remarkable 40 percentile points. Several studies have found a correlation between higher patient satisfaction scores and better health outcomes. In one, published in The New England Journal of Medicine, Harvard health policy researchers reported that higher patient satisfaction was associated with improved outcomes for several diseases, including heart attacks, heart failure and pneumonia.
The need to train and test physicians in “interpersonal and communication skills” was formally recognized only relatively recently, in 1999, when the American Board of Medical Specialties made them one of physicians’ key competencies. Although medical schools and residency programs then began to train and test students on these skills, once physicians have completed training, they are seldom evaluated on them. And doctors trained before the mid-1990s have rarely, if ever, been evaluated at all.
I realize that many colleagues may see methods like ours as too intrusive on their clinical practice and may say that they don’t have the time. But we need to move away from the perception that social skills and better communication are a kind of optional extra for doctors. A good bedside manner is simply good medicine.
A passionate diabetes specialist told me how she sat down with a patient to understand why he was not using his diabetes medications regularly, despite numerous hospital admissions for complications.
“I can’t continue to do this anymore,” he told her, on the verge of tears. “I’ve just given up.”
She placed a hand on his shoulder and just sat with him. After a pause, she said: “You have a heart that still beats, and legs you can still walk on — many of my patients don’t have that privilege.”
Five years later, recalling this episode, her patient credits her with inspiring him to take better care of himself. The entire encounter took less than five minutes.
Nirmal Joshi is the chief medical officer for Pinnacle Health System.
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Last edited by sarah; 01-05-2015 at 01:13 PM..
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