TRIPLE POSITIVE GROUP
Comments
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Tonlee: sorry meant your hands and your right it was from another thread. Hope things improve.
L
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Moni: Thanks for your input. It helps to know others can relate! (especially another lady with the same dx) Are you still on Herceptin?
Liz
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Hi everyone, im planning to switch MO. But I get herceptin every 33 weeks til november. Those of you that switched MOs somewhere along the line, do you think I should wait til herceptin is done or switch mid-treatment if im unhappy with my current doc? Any advice would be appreciated.
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Jackboo09- No, I cannot have Herceptin, allergic to it and was unable to complete chemo for the same reason. I wish you luck. Keep posting how you are doing! All the best.
Shore1- I would absolutely switch! This is your life. May I ask why your considering switching? I assume you mean 'Herceptin every 3 weeks'? You really need to like, trust and have your Dr understand your desires and opinions.
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Shore1
I have been thinking exactly the same thought. I'm very unhappy with his lack of ommunication with me. My BS...who is superb...is my source of information. They know each other well and I think the mo defers to him but I need BOTH .
This is a difficult decision.0 -
If you don't like your MD switch. No need to stay in a bad marriage even if kids (mid-treatment) are involved.
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Lago
How often do you see you MO post op , chemo etc?
I was just reading up on Tamoxiphen since that appears to be in my future . I read that many anidepressants interfere with it's effectiveness. I thought lots of ladies in these threads were on anti depressants? And if I remember they were prescribed to help with SEs of dx, chemo and Tamoxiphen!0 -
Ashla I'm sure many think I'm on anti-depressants because I have a very up beat attitude on line but I've never taken any… not to say I didn't have my down times especially before surgery! I am also on the ESD (estrogen sucking drug) Anastrozole (generic Arimidex). Although I went through chemo-pause (last period 2 weeks prior to chemo) my onc felt based on my age and family history that my cycles weren't coming back. She tested me for several months.
After Chemo I would be seen by someone every 3 months till the 1 year of my surgery (NED). After that 1st year it went down to every 6 months. My BS and MO alternate but most places don't have you see your BS. My BS just likes to be part of the process so my MO & BS split the job.
I would think after 5 years it would go to once a year with my BS & MO switching off each year but I'm not sure. I was told I would be seeing my BS for life.
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Lago..
I also understand that the BS relationship is for life . My bs says after awhile it's a social visit! He is definitely leading the way in my treatments now .
I was okay with my uncommunicative MO only because I was in touch with my bs regularly but that will be changing in the near future .
You seem to have a very good attitude post treatment. Your attitude is that of a real " survivor" which is my goal. I'm far from being there.0 -
Yes, I meant every 3 weeks. I don't like the fellow. He's condescending and blows off every concern I have. I realize I can insist on seeing only the MO or another dr, but the way they have forced the fellow on me from the beginnin makes me uncomfortable and I have enough problems with out adding this. Do you think switching mid-herceptin treatments is feasible? Also do I have to say anything to my MO abt leaving? I really don't have a relationship with her at all since after the first few appointments during treatment I became a "fellow patient."I
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Ha ha Lago, love your analogy!
Yes, indeed, switch. You need to have an onc you feel listens to you and works well with your personality. I was just saying yesterday how lucky I feel to have found my onc, b/c not too many people would put up with my incessant questioning of everything. DH agreed and said yeah, it's just like how he tolerates me. LOL!!!!! DH is always cracking jokes and keeping me laughing at myself - just what I need.
If it were me, I'd just "shop around" for another MO until I met someone who's personality seemed to fit with mine, while continuing with your current MO. I'd make up a list of things you are looking for in an MO, and ask them if that is their style. Why not be open and honest with them? It would be a great way to start a new relationship. Then, once you find someone you are comfortable with, ask them how to coordinate the switch from your old MO to your new MO.
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I'm just curious, why do you continue seeing your BS forever?
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Shore 1
I also have Herceptin till November...... 8 more treatments and right now I'm leaning toward continuing with him till I finish Herceptin.
I've started questionning people and doing some research. I will look for an MO who specializes in breast cancer ...hopefully HER 2. Don't mind traveling into NYC at this point.
The best person to ask is my BS but he and the MO go way back. They are not in the same practice but do rounds together and are on the same tumor board. That is one of the major factors that keeps me with him.
The sad thing is that I think my MO is a very brilliant doctor. He just has this ..'i'll do the worrying and thinking for you" attitude that doesn't go over well with control freaks like me.0 -
Kayb,
I didn't mean to exclude anyone from my question. I welcome all the inormation I can get from all of you smart , experienced ladies.
Thanks for the answer. Whenever I get to talk to my MO I will ask about future followup schedules. Your MO 's attitude is exactly what I'm looking for.
I just realized that my BS gave me the go ahead for rads and it occurred to me that my MO never called me in to say anything about it! For all I know he might not know I've started!
Thanks or the link on Tamoxifen. I don't take anti depressants...yet.....but noted that many of he ladies do and thought maybe I could if the SE's fom Tamoxifen were troublesome. I had no idea
They interfered with Tamoxifen!0 -
kayb,
Your onc sounds like my BS. He always answers all my questions and never talks down to me. Calls me personally with results. He even discusses complicated issues in a way that you know he respects your intelligence .Also seems to enjoy the discussions... That's very interesting.
For all you newbies..look for doctors who enjoy talking with you about treatments and is excited about new ideas. My BS is very excited about DNA/RNA targeted treatments and loves to talk about it.
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dechi I know for those of us that have had a MX or BMX we don't get mammos anymore just a physical exam. Right now my BS, MO and Gyn do that but your Gyn always gave you a physical exam. Remember that the BS takes out as much breast tissue as possible but can't get it all. Also there can be a local recurrence usually on the scar if it happens. Not super common with MX but it can happen.
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Lago,
I hear you about the BS taking out as much breast tissue as possible as I'm a living example of having a local recurrence on the side I had my initial MX! She likened it to trying to remove all the chicken fat off a chicken breast
. I only asked the question b/c I never saw my breast surgeon again after my initial MX in 2003 after the first couple of postops and I haven't seen or was asked to see my current breast surgeon again after a couple of postops....I will be seeing her sometime to get my port out down the road..0 -
I am the exception to the rule - I will get mammo's and MRI's post BMX b/c I had close margins all over the place, apparently. And, my BS and RO are very conservative and somewhat uncomfortable with the fact that I had full fat grafting (still relatively new procedure in the reconstruction world) and nipple sparing on one side (the side we thought was prophylactic had the nipple sparing...should have been fine, but there was a 2 mm surprise DCIS lesion).
My BS and MO alternate with me - every 6 months. See MO every week right now - on TCH.
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Dechi some people just see their MO. So while my BS and MO switch off many others just see the MO twice as much. I also hear some just see their gyn.0
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Hi dance....
How are you feeling today? Still on the steroid high?0 -
Thanks for asking Ashla! I am "so-so". Energy level still surprisingly good, so I'm sure that's the steroid high continuing (still another dose left to take tonight). I was on the "D" train most of the morning, though, and now have a fever 99.8 F. So, 1st TCH I had the "C" train right away w/terrible stomach cramps, no fever until Friday. I'd rather have the D train. I'm on probiotics, taking pepcid with every dex (and making sure I'm having it with food) and drinking prune juice (which I'll be tapering off a bit on) this time...seems to be working to keep me from the cramps and big "C" so far...but I know it can all change very quickly. Last time I also didn't get my Herceptin until day 2 b/c of my history of allergic reactions and wanting to do infusions very slowly the first time. This time, did it all in one day (but a lower dose of Herceptin, going to weekly for that). Perhaps that is why I'm getting the fever earlier - I know that can happen with Herceptin. Oh, and also, although my white counts recovered by the day before this 2nd TCH, they were just barely normal. So, I'm gonna get hit harder this time. Onc is seeing my Friday for bloodwork/Neupogen instead of waiting until the following week. Trying to prevent the neutropenia drop earlier.
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Shore1 If you know the MO is not a good match for you and is not supportive, make the change sooner than later. If you remember, I had a terrible MO who was also dismissive (when she actually met with me which was only 5 times in the whole year of treatment). Anyway, I waited until Herceptin was over to make the switch but I wish I had changed sooner. I was feeling too emotionally vulnerable at the time and finally felt strong enough to deal with it when the Herceptin ended. I think it's completely feasible to make the change and I don't see any clinical reason that it would be a problem.
I don't think you have to tell the MO directly. However, I'll tell you that by the time I "fired" my MO I was pretty steamed about her attitude so I took DH to the followup appointment and I had decided to confront her. She walked into the room that day, looked at DH and said "So Mr. H, how has the last year been for you?" in a sarcastic, joking way! WTH-she acknowledged my husband and acted like I wasn't even in the room. Well, I politely waited until the end of the appointment and told her we needed to talk. I told her that I just didn't have rapport with her, that rapport with my MO is very important to me and that I wanted to be assigned a new MO or I would leave the practice. I was very matter of fact and didn't go into all the minimizing and dismissive things she's said to me-no need. Not having rapport pretty much summed it up. She was stunned and I felt very empowered when I left that day (instead of defeated like she usually made me feel). In many ways it felt like ending a dysfunctional relationship-what a relief! I'm scheduled to see my newly assigned MO tomorrow and I hear that he's wonderfully empathic and supportive:)
Looking back, I remember thinking that I could tolerate a doctor with poor "bedside manner" as long as they were an outstanding clinician. I no longer feel that way. There is too much time invested in this journey to put up with an uncaring, dismissive doctor-I think it's actually hurtful. I know it's an uncomfortable position to be in but you'll be happier when you have an MO that is caring and supportive.
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I never had to change, but I lucked out. My MO is amazing I can call to him anytime, he listens, he answered my calls and questions, his PA and staff are great. I see him before every tx, get bloodwork every tx ( weekly) I never feel rushed, he takes his time with me I feel lucky to have him. If you don't feel this way, you need to change.
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I had issues with my MO's NP. I won't get into it here but t hose who followed me through chemo might remember. I was calling her nurse Ratched on these boards.
I told my MO that we just didn't click and in the future I would just like to deal with her. One my chemos my MO wasn't going to be in town and asked if it was OK to see my NP. I said sure. Oddly enough we get along great now… but I do know what her limitations. She says "no" a lot.
I was pretty close to changing MO after my first tx because of what when on with the NP. I was pretty upset and didn't want to go back if I had to deal with her. Seems so funny since we get along great now. My point is maybe you need to talk to you MO and let him/her know what you want/need from them. Unless you just dislike this person it might be worth a try.
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Good discussion. My oncologist is smart, sweet nature, and tentative. With that said I admit, she's not perfect. Even though we've disagreed, she's been respectful as I have been as well. I feel fortunate to be under her care because if I have a concern she's going to check me out. I've been seeing my oncologist at least once a month, but from now on only every 6 weeks at least for now. I have a feeling that I won't be able to continue treatment and for this reason, I will only see her twice a year or when I have concerns. Not sure, all depends on next echo. Well, at least I won't have all the co-pays
I see no need to be under the care of my BS. But, if I wasn't under the care of an oncologist, yes, I would see the need to continue with my BS. To me the bs work was done after the post op appointment. The BS specializes in surgeries and the mo in cancer. My BS was in your face type of person and would tell me like it is. I said, no bother, I would do the same
I like her not for bedside manner, but because she is a 5 star surgeon, and once a trauma surgeon. To me, a good surgeon is more important than the bedside manner. With my BS I was in good hands. I would highly recommend her. I heard from a previous BS that an good oncologist is hard to find so I' feel happy to have someone who is willing to work with someone as stubborn as I.
For those who are having heart issues with Herceptin, we have to add the cardio doctor to our list. I'm not sure about the one I have so I'm going to shop around. I have a feeling whoever I choose that it's got to be someone who knows about Herceptin and has good bedside manner. I actually fired the one I have, but his nurse called me back to see him to give him the chance to explain things to me. I met with him, but he doesn't see the seriousness of what I'm experiencing.
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Thanks for all the wonderful advice. I think "shopping around" is a good idea now that I'm not in a panic like I was last June.
Dragonfly - Glad you got away from that MO! I used to feel that way too about being able to tolerate bad bedside manner for an excellent clinician, but not anymore - if I get a chance to have my concerns addressed every 3 months, I want someone who will not blow me off.
Lago - I wish I could have that conversation with my MO, but don't have any relationship with her since its the fellow I've had to deal with all year and it just feels too uncomfortable. I'm not going to stress myself out about it, and will find an MO I like - luckily I have a lot of good choices nearby.
Ashla & Dance - I ask a lot of questions too, and I think most people in our position would. But I actually got eye rolls from the fellow because I came to appointments with written questions. Really unprofessional and rude. A real jack ass is more like it.
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shore1 - ohhhhh....the eye roll...OMG, I'd be p*ssed off to no end if I got that. Yeah. Time to go doctor shopping I think.
BTW, not everyone asks lots of questions. My onc's nurse practitioner said many of their patients prefer to know nothing, just do whatever they are told. She said she knows I am proactive and that it helps me to understand everything, so they will take as much time as they need to to help me know why this/that/etc. is being done in my case. Gosh they are so patient with me!
I think it is too scary for some people - they would rather know less and just hope for the best. It seems to me that those of us who frequent these boards tend to be more proactive types of patients who want to be a partner in our healthcare. Everyone has a different way of handling these things. It's hard for me to understand the other approach, but, I'm sure it's just as hard for those kinds of patients to understand why knowing everything helps me vs. scares me.
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LOL, LOL, LOL kayb!!! I can totally relate to being "unique"...aka PITA! I told my onc I know that I am borderline OCD in my wanting to know everything...and that I don't like that part of my personality...it's actually a form of self-torture...but the more I try to control it, the more anxious I get...so I've found it is better just to give in to it and ask questions! And then I sweetly asked him not to document in my chart that I possibly have OCD. Ba-ha-ha!
My onc told me he enjoys our conversations, too, but also told me if I go too far over the line he will be sure to let me know. He knows how to respect me yet at the same time maintain the fact that he is, indeed, the doctor in charge!
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kayb, I KNOW I don't want to know! My onc also happens to be board certified in psychiatry. What a great combo: onc and psych! Perfect!0
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Shore- Wow, I'd definately look for a new Dr. However, after working on the 'other side' side for years, use caution when you fire him/her, you do not want a 'label' attached to your name. Most Dr's confer with the old Dr before seeing you. Remember that this is the Dr that is batting for you and may literally hold your life in their hands. Since you are currently in tx, you could ask the staff who they like. Generally the staff knows them pretty well. If you're not comfortable, change!
My MO will see me every 6 mo's. As of now, I will not see her until August, as they are watching an enlarged lymph node found in February. I only saw my BS for 2 post op's. I'm kind of glad she does not see me sooner- tired of the Dr appt's!
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