2017 Diagnosed-- A Place To Share "Whats Next"
Comments
-
Hi all, I just had my last radiation follow up. Everything is fine and no need to return to the RO unless I feel I need it and long as I am followed up with by the MO and the BS. That is good news to me! I always get anxious when I have follow up appointments. Love my docs but I don’t like the reminders when I walk in their office. Two more appointments this month with the MO and PS then I can push it to the back of my mind a bit.
I was wondering if anyone has had the PS order an MRI to check their implants yet? I thought he had told me every two years but I can’t remember.
0 -
Great news, Legomaster! I see my MO for a checkup, blood labs. mammogram and bone scan next month....bone scan is due to my switch to Arimidex. I actually get more stressed about these checks than I would like to admit to myself.
Last week. my PS said that although the manufacturers suggest a check every couple years, he prefers to do clinical checks and follow up with a scan if things seem problematic. I am trying to get through my appointments next month and then I will give that more thought. One implant was placed 2 years ago and the other back in May., when I removed a small textured implant on my natural side (for contouring) and replaced it with a smooth.
I am highly claustrophobic so then there's that consider:)
0 -
Scrafgal, I also find myself with a slowly rising level of tension as the yearly mamm approaches. I used to not fear a mammogram, what could go wrong? I wasn't going to get cancer. That happens to other people. And yet here I am.
This year I waited all September for my call for the mamm and no call came. Finally got on the horn to the hospital and asked why I hadn't been called for my annual appointment? They have no record of me needing to be called. Uh...how does this crap keep happening? So I call my doc and say, hello? what's going on? why is my mammogram now past due? This does nothing to ease the tension. It seems if I am not continuously on top of things, shit falls apart.
0 -
Agreed, Runor! I just had a little spat with MO's office. I am not clear whether the the MO was actually involved but certainly the nursing staff. The issue was related to hormonal testing for estrogen after having just switched to an AI. Essentially, recent medical literature stresses the importance of periodically testing even after you've been deemed menopausal because of possible ovarian function recovery (OFR). It happens in a lot of cases with chemo-induced menopause. I was not menopausal before BC. After chemo, not quite there either, so that is why I was on tamoxifen. Because I had a partial hysterectomy 5 years ago (kept everything except my uterus), we had to keep testing my FSH, estradiol etc. to see when I would reach menopause, since my ovaries were still producing hormones. In July (after almost 2 years on Tamoxifen), it seemed that I was at least year into menopausal status hormonally, so I made the switch. AIs are supposed to be better at reducing recurrence risk and I had high-risk tumor. At my last appointment, my MO said that he would check my hormonal status, in November, to double-check to ensure that my ovaries were still essentially "done." Well, the nursing staff contacted me about the appointment and said that they would not be checking my estrogen and that they their policy was to check only if there is breakthrough bleeding. Clearly, she had not read my chart which indicated the partial hysterectomy AND my MOs intentions to check my estrogen level to guard against OFR. I had to go back and forth with her, tell her about the medical literature that I read and that my MO knows about, before she finally just sent a message today saying: "we've ordered the test for your November apppoint." It was a lot of hassle for no reason.I didn't ask for some expensive test and they were doing a blood draw anyway! How hard does it have to be! I acknowledge that perhaps I am being overly cautious but if I have OFR, and then get a recurrence because I should still be taking tamoxifen, then it was me who would suffer a recurrence, not her. So, I had the right to push for something that already had been promised to me. Admittedly, this happened on a day that wasn't going well at work and then I was starting to think about my November appointment, but still...
0 -
Legomaster— no more RO appointments. Congrats! I didn’t have any scheduled RO appointments after completing rads.
Runor—. Sorry you had this added stress with yearly mammogram. I had a similar stressor this year. I schedule my mammos myself as I will only go during a regular scheduled day off from work. Scheduled my 2019 appointment in 2018. Got my phone call week before to confirm. Then received a letter advising that because I hadn’t scheduled my annual mammo for 2019, they scheduled one in 3 weeks on one of my work days. When I called to inquire, I learned my existing appointment was no longer there. After some brief unhappy words from me, my original appointment date was rescheduled
Scrafgal— wouldn’t it be grand if our medical staffs seemed to know what they were doing. It’s so aggravating. I have a full time job. Managing my doctors to verify they do what they say they will do can be like having a 2nd full time job.
Anxiety is building for me, too, as I a few weeks from n appointment with BS followed my an appointment with MO.
0 -
It seems as though there's a lot of misunderstanding about bc in general. I don't think people realize that there is no cure for BC. Just because we had chemo and radiation doesn't mean it won't come back. For me that's the real scare. Yes, I look fine and I'm getting back my energy but on the inside I'm quivering. No my hair hasn't come back completely and possibly never will because of the chemo. Things hurt that never did before. Things aren't the same anymore and never will be. I find people don't seem to get that part unless they've had the cancer experience.
But yes, I found I had to be on top of the medical professionals all the time to make sure that appointments were made and that it was the right procedure being done. I don't know if it's because they're overworked, or its so routine for them that they're numb. If I'm going for an MRI then I expect they know what to do. Not that I need to tell them which part needs the MRI or which part needs the mammogram. Even my own doctor I need to tell every time she takes blood pressure that it needs to be on the right side because of the lymph nodes being removed on the left.
I've had some major restoration problems lately with water leaking into the ceiling from two second floor bathrooms. Now, the restoration company is suppose to be taking care of it but every time a contractor comes to the house they ask me what needs to be done. I say don't you have a work order to tell you what you need to do. Sometimes, I don't know what needs to be done. That's what a work order is for. They wanted to come last Thursday and tear out my one remaining bathroom. I said, and exactly where do you think I'll go to the bathroom, at the local gas station, at McDonalds? Or I'm suppose to hold it for a week until you get in here to put it all back together. Yeah, well someone didn't read the work order correctly and a miscommunication happened somewhere.
There seems to be a huge communication problem everywhere. I've started to realize that it's up to me to make sure things are done. It's that old squeaky wheel gets the grease!
Good luck with your results and try not to be too anxious.
0 -
Agreed, pink. In general, I like my medical team but from time to time I have to remind them of whose life is on the line if things slip through the cracks!
0 -
Having had breast cancer is like living in a Lifetime movie where someone tried to kill you and you got away, but at the end of the movie, the writers make it clear that the potential killer might still be out be out there, and there might be a sequel!
0 -
Scrafgal - that is it exactly!
0 -
Scrafgal, never thought of it like that but that is SO true. Lol
0 -
Pink Is My Colour - I understand exactly what you said. I too, have to direct, remind, suggest, and follow up on every Dr visit. It is exhausting.
0 -
It’s been pretty quiet here. Hope that is a sign that all is well!
I have an MO appointment tomorrow and am surprised that I find myself a bit concerned
That seemed odd to me. After all, we have all had a boatload of appointments in the last 2 years. So I expected this appointment to just feel like the next in line thing to do. That’s how all the appointments during active treatment felt. Walk this path; have this treatment; move on to the next step.
But it occurred to me that this MO visit is different. While on active treatment, I had cancer. Now I don’t. So I feel more vulnerable, I think. Before, there wasn’t much to worry about with the MO. Meetings were about SE and how well I am handling them. Now I don’t have cancer but if it were to come back, these MO visits are a likely place to hear those words and there is a bit of trepidation as tomorrow’s appointment nears.
Did not expect these feeling. Sigh
0 -
Dodgers, I know what you mean. Any time I walk into a hospital now for any reason, boom, I"m back there. That smell. The smell and the ugly flooring and those god awful rubber baseboards. For me it's the annual mamm that makes me tense. I never used to worry about them, pffft, I would never get cancer, I was not those other people to whom bad shit happens. Now I know differently and can't unknow it and when they crush my boob in that machine I know that the world hangs by a thread. I come home after one of those appointments and go straight to bed. I bet the actual tension you feel is even bigger than you realize. It is exhausting being that stressed. Hugs to you.
0 -
I am right there, too! My MO appointment is this month, third week of November. I've been getting increasingly anxious about it since early October and I don't know why, really. I think that I just feel good about how my life is going and think...that's how I felt right before I got diagnosed! I also got diagnosed two days after Christmas. So, that time of year is still joyous but I have a cloud in the back of my mind. I feel that I can't tell anyone but my sister how I am feeling and now I feel that I am recreating the stress for her. So, I am going to try not to talk about it. I am just going to have to go and get it over with!
Best to everyone!
0 -
I follow this thread but don’t usually post. I guess sort of keeping tabs on how you all are doing. This topic intrigued me. I have a MO appointment coming up at the end of the month too, but I don’t feel any stress about it and I started wondering why.
I wonder if it is because I never feel like I get to leave Cancer Land? I go to the cancer center every 28 days for Zoladex injection, which they do in the chemo ward. I hated that at the beginning, but I just shrug it off now. My mo appt is just another pit stop while I’m there, like getting labs.
Heck, I still have a nasty bruise from Wednesday’s injection that will take another week or so to go away. Maybe I have a constant low level anxiety and don’t recognize it...I can see how going back after you’re “better” would suck.
As for mammos, I’m not even sure I’m going to continue those. I had a 4+ cm tumor they couldn’t see, plus like 6cm of DCIS, also not seen; what’s the point? Now with the implant on my good side, I can’t imagine it’s any better. Plus it’s a lot more tender than it used to be. They’re always preaching about unnecessary scans...but Get that mammo! Who cares if it’s useless?!
Anyway, I hope all of your appointments and scans go well and we all get the “all clear” until next time!
0 -
Cpeachymom,
It is interesting that I volunteer at my cancer center every week, visiting patients in the hospital. A lot of people wonder why or how I do this, thinking that it must make me sad. However, it doesn't. I actually enjoy volunteering and feel energized knowing that I have helped others. I actually only feel this anxiety before testing. So, I still just find it odd. I also had a 4+cm tumor AFTER a clean mammogram. So, I will continue to do them (I am 53) but I feel that I can't trust them completely. I found my own tumor on self-examination!
0 -
2019 is soooo different from 2017 and 2018 for me. Here it is early November and I haven’t maxed out on my insurance yet. 2018 I maxed out in February and 2017 I maxed out in March. Finished my clinical trial in April of this year so now just taking my AI and having 4 month follow ups with MO. Definitely feel out of the cancer routine at this point. Think that has a lot to do with my appointment tomorrow. I am going to an oncologist who will be looking for cancer, not treating existing cancer. Argggg
0 -
Hello,
Scrafagal, you are brave and kind soul. Please keep up the good work.
Dogersgirl, just have to keep going. We sisters probably never get away from the BIg C related PTSD.
Been enjoying staycation quite a bit. Still work a boring job. Thank God for my hubby and my dog. Got Abdomen CT scan done for preemptive measure only.
Life must go on.
0 -
Hi Dodgersgirl and all, and thanks for the updates! I've been checking in less frequently here, which I guess is good, but I do think of you all frequently. My last mammogram was a bit of a heart-stopper -- a new radiologist "thought he saw something" and I had to stay to do an ultrasound and then wait for the results. It was nothing, but I gave that young doctor a piece of my mind for not realizing I had already has breast cancer + scaring the heck out of me by not explaining why he kept me for the US. I had to laugh later tho, since what was going through my mind was "Cancer's a bitch but I'm a bigger one with more practice."
But overall, my routine is pretty back to normal with just a daily Tamoxifen pill as a reminder that life is short, and I better make the most of it.
HUGS to all of you.
0 -
back from MO appointment. Funny thing is he started out the appointment talking about the new “norm”. He said he will see me every 4 months and as long as I feel good, he doesn’t expect to be the one who finds cancer. They are working on the assumption that I no longer have cancer and count on me to report aches and pains to them so they can then investigate more deeply.
He talked about this being the scary time, hoping to be cured but watching for recurrences. Said it gets easier with time.
He said the same thing I have read numerous times— that with metastasis, the prognosis is the same whether it’s found early or not so no scans without a reason.That taking my AI and doing mammos and self checks are my best tools, especially checking along the scar.
I will feel better when I see the results from my blood work. But for now, all seems ok.
0 -
Dodgersgirl,
That is great news! Hoping the same for your blood tests.
I woke up this morning and thought: In 2 weeks this dreaded wait will be over! My appointment with my MO is 2 weeks from today. I will have blood tests, mammogram and a dexa scan, since I am now on an AI with bone risk!
I went to visit my cardiologist, whom I saw for the first time last year, just to check on things, one-year post chemo. He wanted to me to check in for the first couple of years. I don't have any symptoms of heart disease, but wanted to stay on top of monitoring.
I just took an echocardiogram yesterday and it was normal (after he saw something weird on my EKG) but my cardiologist is trying to get me to do some other scan. I have asked him to justify the time and radiation associated with that other exam, since I have no symptoms of heart disease, have normal cholesterol and basically do cardio workouts with no problems. I even live in a three-story home and run up and down those stairs constantly! I feel like he is looking for something to be wrong with me. I think that the EKG that showed something wonky was not that accurate because the nurse was talking with me the entire time. I didn't want to throw her under the bus, so I didn't tell the doctor. Plus, I didn't mind having the more rigorous test (echocardiogram), since it is basically an ultrasound. I was happy that the echo was normal, and was expecting for him to just say "you are good, come back next year."
I just don't want another test that involves radiation unless it is absolutely necessary. From everything that I researched yesterday, a nuclear stress test is generally for people with symptoms (chest pain, fatigue, difficulty breathing, swelling legs or ankles...) or already diagnosed with some type of heart disease (e.g. prior heart attack, on statins for cholesterol). Are there some people in my family that have heart disease? Yes, but not in any extreme sense (meaning, nobody had heart attacks in their forties or anything). Personally, I have not even had high blood pressure, which does run rampant in my family, likely due to diet and weight issues with family members. I am a normal weight and eat healthy--pretty much my whole life. Sorry..didn't mean to vent, but I feel like the fact that he wants me to take this test is (a) challenging my self-image as a healthy person...whatever shred of that image is left after breast cancer and (b) making me worry about the radiation effects in the long term.
I am waiting for his response, via MyChart. I've not scheduled the other test. To be honest, this is really bothering me. I also have my MO visit/testing in two weeks. That is enough stress! I don't want my pride in my identity of being a healthy person to get in the way of me taking a test that I need. At the same time, I feel that some doctors don't think about the cumulative effect of radiation-based tests. I am challenging him (which I am sure that he doesn't like), but I feel strongly about avoiding radiation. I had wretched chemo but at least avoided radiation with my breast cancer treatment. So, that helps with my risk of heart-related issues with treatment, too!
Okay, venting is over!
0 -
Scrafgal— fully understand how you are feeling about the suggested next heart test. Went thru that in my early 30s when EKG before minor surgery showed something odd and they pushed for a nuclear stress test and then heart cath. I was embarrassed to go thru that while so young and healthy. In my case the heart doctor literally said to me during the cath that I had wasted his time. I had no blockages. Instead it was discovered that my heart arteries developed differently from the norm and all my EKGs will be “special”. It was handy to have a baseline EKG while undergoing BC treatments
Hope what ever you decide to do eases your stress
Best of luck with MO appointment, too.
Keep us posted. We are here for you.
0 -
Thanks, Dodgersgirl. That is exactly what I am going to avoid. I feel that any type of false positive on that test, if I took it, would lead to a needless invasive procedure. I will let you know how that and my MO appointment turn out.
0 -
Scrafgal —. Sending you best wish hugs for your MO visit later this week.
Cpeachymom— also best wishes for your doctor visit at the end of this month.
Georgia1–. So glad your last mammo showed nothing. Really sorry you had that brief scare though. How that must have taken your breath away at that moment
Runor— if you have a mammo upcoming, sending you “positive thoughts” (my wording is specific to your recent run in about negative thoughts. Geesh— some people!! ) seriously, hope you only have good scans going forward. And, as many others have said to you, love how you put your thoughts into words.
Castigame- hope your abdominal CT went well. I had one in 2018 due to pain after hysterectomy.
Received a note from my MO last night in my patient portal advising blood work looked good. Next MO scheduled appointment is in 2020.
Time to make the most of the holidays. Will be sad/strange without my mom but we will work to see the many blessings all around and find joy that way. I am sure there will be tears but we will work to remember all the holidays we did share
0 -
Hi everybody - really good to check in and see all of you.
I have maintained, I really never thought too much about my treatments ending - Until the "Breast Cancer Awareness Month" came. BaBoom! Now I'm double thinking - should I have had radiation? Should I re-think not taking Tamoxifen? What if my Cancer comes back in my lungs (I have lung disease) What ifs are playing mind games with me as never before. The question is always asked, or rather stated "You did everything you could" Well, did I? My MO has the sensitivity of a gnat. My BS follow up I blew off - what could she add to the storyline?
Anybody still have their port? I do. And it hurts. But I'm trying to get IVIG treatments (for my auto immune diseases) and need my port. Anybody ever have it removed then replaced? same spot or do they go to the other side? I asked My MO and he couldn't answer- told me to go ask my BS, she told me to ask my MO.
Take care everyone - Rj
0 -
I took my port out as soon as I had my exchange reconstructive surgery post-chemo. I am a hard stick, and I sometimes wish I had a secret port, but I just wanted it OUT!
I don't know how to quell those what ifs...Tomorrow I will know how my testing turns out. Yet, all of the buildup is just something that I want to avoid or signficantly reduce going forward. I just can go through this every time I have tests come up. If these test turn out okay, I am hoping that my MO will move me to a twice yearly visit schedule. I think that is what he said we would do around the 3-year post diagnosis mark. In any case, I will let you all know what he says tomorrow. Thank you, DodgersGirl for the hug and best wishes!
0 -
I just got back from seeing my MO....My mammogram was normal, no changes in bone density and labs were fine! I am so relieved! Even though my vitamin D was normal, he wants to boost it. So, I will be doing a high-dose vitamin d for the next 3 months. I already work hard to keep it at a normal level so if he wants it even higher, then I definitely need a boost.
He also said that we can shift to every 6 month appointments vs. every 4 months.
I am going to sleep well tonight. I also feel like I can really enjoy the holidays. I got diagnosed two days after Christmas in 2016 and landed at MD Anderson, via self-referral, on January 2, 2017. I am coming up on three years since diagnosis! I know that is not a long time, since I am only 53, but it's progress!
Thanks for all of the encouragement!
0 -
Scrafgal— that is great news... congrats!
Enjoy the holidays.
0 -
Rljes—- sorry, I don’t have answers to your port question. I just remember when my port was placed, they told me if I needed another one after the first was removed, they would put it in on the other side. Don’t know if that is standard practice or if that is just what my Oncology group does
0 -
Thanks, DodgersGirl!
Rljes, it seems that the issue with putting the port in the same spot a second time is likely related to a problem with re-inerting it into the same vein. My guess is that after using a vein for chemo via a port, that vein might not be a good conduit into the system. I have a tapped out vein in one of my arms from over-use BEFORE I had my port inserted. It still will not give blood. They say that if I avoid having that vein stuck for a long while, it might come back!
0
