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Mar 7, 2020 01:15PM
Mar 8, 2020 12:06PM
This is how my last follow-up appt with my MO went.
Sure, it's not a transcription but rather a lowlight reel of the appt. Wish there were more highlights to share, other than at least she listened about the breast pain and moved up my 3D Mammo. Still, reading the convo back takes my breath away.
This whole situation sucks. I"m here again, looking for a new MO.
I'm scared. I feel lost. I'm beyond frustrated.
First of all, at our last appt I was on about 20 some supplements. She was appalled, mentioning that many of my chronic illness symptoms might be coming from having too many things in the mix. MO suggested getting off of all of them and seeing how I felt. I was opposed to this, knowing many provided relief, but told her I would think about it and see what I could do to lower the number and see how I felt.
I was very proud of myself. I gradually reduced the number over 6 months to only 3 supplements that I know I need due to chronic low potassium, magnesium, etc that my Spoonie Illnesses cause me.
I had written the list of my updated rxs and supplements on a sheet of paper for the appt. Last time I would've needed 2 pages. This time I had only my 15 rxs and 3 supplements. I was amazed. :)
My MO came in, after greeting me, looked at the paper and stated, "Oh wow, this is alot of things to be taking!".
I was dumbfounded. I didn't go in expecting a pat on the head. I went in knowing I had tried what she had suggested and wanted to talk about where I was at with it. That I wanted to add back in a few things, what her thoughts would be on these specifically, and that I can't get the list any shorter, since what remains are the mandatory things I need to function on a day-today basis.
Disappointed is how I felt.
Unfortunately things didn't get any better.
1) I have a chronic cough. I probably ended coughing about every 5 mins or cleared my throat a number of times because of the constriction I feel in my throat during our appt. It's just how chronic it has become. I mentioned it to her that it has been getting worse over the past 6 months and that the antibiotics my PCP gave me in January did not help.
2) I shared with her that my fatigue, which is normal on some level for me to have, has gotten exponentially worse over the past 6 months. To the point where it is difficult for me to walk my dog, to make meals, to clean the house, to do the basics without becoming exhausted. This is NOT my normal.
3) Later I explained to her that my ability to swallow is getting worse, to the point where I am choking on foods occasionally when eating. I'm also finding blood in my throat after conversations, since the pain in my throat gets worse with talking and is getting worse as the months go by as well. I explained about my prior visit to ENT and my visit with my MS Consult and how the results of their exam of my throat were very different in the span of a few months. My MS dr stated it was unlikely related to my MS and that I should follow-up with ENT as my airway was "very occluded". Five months prior my first appt with ENT had said "Everything is clear. I don't see any issues." Things have change to "occluded" now.
4) While she was listening to my lungs, I explained to her that I'd also felt more and more out of breath and dizzy with actiivty, where it previously hadn't caused this reaction. That actually when I lay down on my right side I find it hard to breathe and feel like I'm suffocating, so I have to sleep on my left side.
I wish she had at least demonstrated that she had empathy or concern, she didn't.
Instead after sharing these concerns with her she asked me, "What do you do?".
I explained I've been physically disabled since 2007 and cannot work. She said, "Why?".
I was confused, I'd explained many of my conditions and she'd seen my file at our last visit. I know drs have a ton of patients. It's hard to keep them all straight. I get it, so I told her again about my other dxs of MS, Fibro, CFS, Depression, Lyme, Migraines, chronic pain, fatigue, what my normal was like, and that the inability to predict when my symptoms will hit or flare or keep me in bed makes it impossible to work, sometimes it even keeps me from being able to attend my Breast Cancer Support group on a regular basis.
After that she looked at me, apparently truly NOT hearing or understanding or caring what I'd just told her, instead she said "Well, sometimes it helps to have a job.".
I was SHOCKED and HURT.
Like seriously, did my Oncologist just tell me that if I had a job I wouldn't have these debilitating symptoms? That I wouldn't have trouble breathing or walking or what? That's what it sure sounded like.
Let me be clear, I am not super overweight. Yes, I have about 30 more pounds to lose. I've been working with the Dietitian MO suggested I see at our last appt. I've lost 10 pounds in the past 2 months making small changes slowly. Yet, my weight and my disability in fact seemed to be the reason she was now giving me for why my symptoms were of no note to her.
Maybe I'm way off base but it sure didn't feel like it.
In that moment, I felt like she had labeled me as "lazy" as "paranoid" as "drug seeking" as "dramatic" and therefore my concerns were not valid to her. I am disabled. I am a human being. I am scared. I shared my concerns with her, trusting her judgement and experience, instead of helping, she did a great deal of damage to me as a patient and to my faith in Oncologists.
She had nothing more to say on the topic of my issues with swallowing, the cough, or blood and throat pain, breathing, being dizzy with exertion, etc...even though I made it crystal clear that all of these symptoms are NOT my normal.
The only thing she did show concern over was when I mentioned I'd had new breast pain over the past 6 weeks or so. It had been on and off in the beginning and now was fairly constant. This was a different pain than I had from my Breast Lymphedema. She immediately said we'd push up my 3D Mammo and get an US of the area where I had the pain.
So, mention possible symptoms of Metastatic Cancer or Throat/Lung Cancer or Heart issues, and no concern.
Mention breast pain and immediate concern.
This morning I realized I'd forgotten to add one of the most disturbing and confusing parts of my MO appt to my post:
My prior 2 MOs had told me, specifically, directly that my chance of RR was 28-35% in 10 years.
When I saw my current MO the first time in Sept, she agreed with their numbers. Although she did say "I don't know that it would be that high, but at least between 25-30%.".
I left that appt in Sept feeling we were all on the same page.
During my appt this week with her she DRAMATICALLY changed my numbers...well actually she didn't give me numbers but instead said, "You had a low-ish Oncotype, you had a lower stage, you're young, you didn't have chemo. So your chances of it recurring are very low. It's really nothing to worry about. "
I was so shocked from the rest of the appt and from that statement that my brain stopped and instead of asking questions like what numbers? how did you arrive at this? etc I froze.
This put together with the rest of it just leaves me not trusting her and not feeling safe.
Has anyone else had a MO change their RR in such a way without explanation and dismiss your concerns? It seems so very unprofessional and scary to me.
Am I wrong coming away from that appt thinking my Onocologist is only concerned about my breast cancer and not the overall picture that I could be presenting? Is that all she should be concerned with? I thought the big picture is important for ALL cancer patients.
Maybe my idea of Oncologist is not accurate. Thoughts?
My history with this MO and my prior 2 leave me with the opinion that SOME Oncology doctors do not get the fear I face, the real symptoms I'm enduring, that the concern should be validated in some way and that it's SCARY to me. Instead, I come away feeling that they have lumped my NEW, CHANGING symptoms in with my "normal" chronic illness symptoms, or ignored them completely because they do not immediately point to BREAST CANCER, basically saying "nothing to worry about".
When I first met with my current MO and my prior ones their mantra was the same "Please tell us immediately if you experience increasing fatigue, exhaustion, trouble breathing, and x y z.". My response, "Ok, will do."
I figure this is pretty standard for MOs, am I wrong?
So, it's distressing to me as a patient when I do as they have asked and let my MO know that "Yes, unfortunately this has happened/changed. This has gotten worse. Blah blah blah." and they DO NOT BLINK. No empathy, no concern, no "Ok, I hear you. Here is why I'm not concerned..." or "Ok, a scan etc seems reasonable given x y z." or "Alright, let's rule out a few things and go from there." or "Let's keep an eye on this, if things don't improve after 3 weeks touch base with me." or "Hmmm, I'm glad you brought this up. I'm not sure I can help you with x y z but definitely follow-up with your PCP as soon as you can and let me know the findings."
Any of that ^^^^ would be acceptable and understandable to me, but to not act like you're not hearing me is RUDE and downright DISRESPECTFUL. Especially questioning my disability.
So my question is this, do Oncologists that see Breast Cancer patients only monitor about breast specific issues?
Not possible spread or new cancer symptoms?
Shouldn't they be vigilant or aware of or show concern for the symptoms they themselves ask you to be aware of that may signal cancer spread or a new cancer?
Am I completely off base here? Does anyone else feel this way? Have any of you experienced this? If so, how did you handle it? Do you look for better care or do you stay with that MO and try to fix it, etc?
I'm so confused and so frustrated and frankly, angry.
As a Spoonie that is DISABLED I feel very invalidated and disrespected.
As a Cancer Patient I feel ignored, in danger, and having been labeled "paranoid" aka "set on mute".
IMO it shouldn't be this way. I shouldn't be out looking for another MO. I should be settled in with a Oncologist that has my back, that sees me as a person, not just as a case or a problem. Uggggh. Instead I'm frustrated, angry, and feeling very lost and negative about Oncologists in general and need support.
I hope I'm in the minority, that I've had just had bad luck, and that the majority of patients have found a MO they could trust right out of the gate, so to speak. My reality is that in the past 20 months I've had 3 MO's come and go. I've been sorely disappointed and disrespected. My heart now has virtual Cancer Dr scars added onto the many other Spoonie scars previous drs have left over the years with their disrespect, ignorance, and just plain rude bedside manner.
Hopefully most haven't had to know the fear, the dejection, the hurt, and the lost feeling that comes with realizing that the MO you thought would be with you for the next years, by your side, helping you move on and continue to keep cancer at bay won't be. Realizing they are just not listening to you or taking you seriously is a gut punch that no one should have to deal with IMHO.
After all, we are cancer patients and we've been through the gauntlet. No matter the type of cancer, or the treatments, or medications, in the end we are all human beings deserving of care and support in the years after active treatment has finished. Our MO's should be able to provide this in a respectful, timely, accurate way.
Thankfully I know first hand that not all drs are created equal; just like everyone else, we are all human, we are all different, and all unique. I've had AMMMMMAZING Spoonie drs in the past and thankfully have found a wonderful PCP that has my back so I definitely know they exist (picture the M&M candies and Santa!).I just need to find the one for me. She's out there and in the meantime I'm just feeling whiny and frustrated with my bad luck.
I don't think what I'm looking for is asking for too much. I would like an Oncologist that sees me first as a person, not a "cookie-cutter case", not a "number", not a "problem", not as "lazy", and most definitely not as a "hypochondriac". I 100% WILL find a doctor that sees me as the human being I am, one deserving of compassion, empathy, understanding, respect, and the best medical care they can give me.
If you've been through this maze of drs as well, I hope the right one for you is just right around the corner. I'm trying to keep the faith, I hope you will too.
I go in for my 3D Mammo and US on 3/18. I'm worried. Won't lie.
I have calls in to my ENT and PCP to follow-up on my own about the other symptoms I'm used to it, this is what Spoonies are familiar with; having to battle alone when drs don't listen, to fight for continuing care. It's what I had to do with my Thyroid Cancer as well. BTDT.
I have an appt with a new MO on 3/24 to see if this Oncologist is a better fit. She has an interest in Pulmonary Cancers as well, so maybe she will have a different opinion on my scan history and progressing symptoms.
Until then, one foot in front of the other. Again, I'm used to it, but wow it would be lovely to have a MO that had my back.
Sending light and healing to all....you are not alone. <3
"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left, Diet & Exercise. PS: Not a dr, just a Googler.
7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH)
8/29/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel
8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2
9/30/2018 Whole-breast: Breast, Lymph nodes, Chest wall
3/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
7/1/2019 Zoladex (goserelin)