Frustrated with this process.

serendipity09 · December 2021

msradar - I guess I'm not understanding. If you've already made the decision that you are not going to go through any the of treatment, why are you frustrating yourself with the medical processes other than getting the clip removed? Have you been diagnosed? If not, do you want to know? Are you here to vent? Are you you looking for others that share the same experience? I'm not downplaying your reason for being here.

I have many other health issues prior to having been diagnosed and I've been through chemo and radiation and several surgeries and a few more to come. I was diagnosed with a recurrence 10 months after my initial treatment ended. I'm currently in active treatment and I don't like it. The risk of complications were/are high, but the benefit of being alive outweighed the risks and the side effects, for me. Sure I have my bad days and good days, but, for me, and many of us on here, being alive and staying alive is the goal.

You haven't been through treatment to say that you will suffer. You don't know what could happen and yes everyone reacts differently. We've (bco members) all "suffered" on different levels, some with severe ailments other than bc, but we've endured.

I have had medical staff be short with me, but I've also had very positive experiences with medical providers. I know that right now in my state the medical professionals are over-worked due to staff shortages because of the pandemic. So I make it a point of asking my questions and getting my concerns across in a way where I'm not coming across as rude. I shoot straight from hip, but in a way where I don't appear demanding or rude, as they're doing the best the can. And I'm not saying that you have been rude.

You've already made up your mind and that's ok. I wish you nothing but good luck and I hope that everything works out for you.

edit: I just saw that you are not diagnosed, my bad for not seeing it earlier. I'm happy for you, but you are posting on a group with people who do have breast cancer and we are fighting and throwing everything at this beast so we can stay alive. Do what you have to do, but don't assume to know what we are feeling or experiencing. Again, good luck.

wrenn · December 2021

The phrase "read the room" comes to mind for me here. You are asking a forum of people with cancer (many in treatment) to support you in your hatred of the medical system?

Please show some respect for the members here.

B-A-P · December 2021

Yeah I gotta agree with many here. You’re in a forum of all women who have been diagnosed. Coming to vent about the medical system and how you despise mammos and clips and the the people treating you, is inappropriate. I WISH my medical providers would have been that pushy to get me seen because it was a lack of imaging for me that caused a huge delay in diagnosis for me. Had they even given me a mammo ti begin with , the ball would have been rolling a lot faster. Maybe I wouldn’t have been de novo stage four.

It sounds like even if you did have breast cancer, you wouldn’t even do treatment (maybe I’m wrong it’s just the feeling I’m getting from you) because you witnessed your friend sick as a dog.

I’ve been treated not so well by the medical team during diagnosis because I was 28 when I started the process and 30 when I got the diagnosis. But instead of writing everyone off , I asked for a different doctor. It almost sounds like maybe they were reciprocating the same attitude you were giving them ? I can’t tell for sure , but your post seems aggressive and I know that I don’t respond well to those who are aggressive with me and respond so much better when the experience is cordial on both sides. It’s hard to comment and I apologize sincerely if I have it all wrong , it’s just hard to fully get since most of us are not exactly sure what you were hoping to get out of posting ?

Hopefully your problems are solved quickly and the clip removed soon so you can move on cancer free. Good luc

exbrnxgrl · December 2021

msradar,

I agree with many of the previous posters. I have lived with mbc, stage IV bc, for ten years. My personal experiences with medical personnel has been quite different than yours. So I hope you realize that painting everything related to bc diagnosis and treatment with such a broad brush is not accurate for everyone every time. And to repeat, we all have bc and have been treated for bc . You also made a comment about your dissatisfaction with diagnostic procedures and the whole diagnostic process. I agree that there should be better ways to do this. There should also be better treatments and there should be a cure. But these things don't exist yet so we can only work with what exists.

I am thrilled that you don't have bc and hope you never do, but please be respectful and understand that this is a bc forum and the vast majority of our members do have bc. I for one am grateful to modern medicine. Ten progression free years at stage IV and living an almost normal life? I'm not fearful or anxious, just happy and grateful.

MountainMia · December 2021

Maybe it's time we all stop weighing in. Very likely no one will change their mind or how they feel about things.

Sincerely wishing you the best, msradar.

wrenn · December 2021

You're not the boss of me.

LW422 · December 2021

Best Popcorn GIFs | Gfycat

Beesie · December 2021

"I'm just pissed that you get put through all this for 80% benign rate."

Seriously? As I said in my previous post, you really need to educate yourself on the diagnostic process. You say you want facts yet you don't seem to understand much at all about all the things you are complaining about.

I've had 7 breast biopsies, the first when I was 16 years old. 5 of those biopsies were benign, 2 were malignant. All were necessary. I know this because I understand what imaging shows and doesn't show, and when and why biopsies are recommended. I read my imaging reports, I discuss the results with the radiologist or my doctor, I get the facts. I understand the diagnostic process. I've had 7 biopsies but I've had just as many short-term imaging follow-ups, which have helped me avoid unnecessary biopsies. I am grateful for the care and diligence of the many techs and radiologists I've dealt with over all these years.

Do I wish the process was easier and that diagnosis could be made another way? You bet. But that's for the future and I live in the reality of today.

MountainMia, you are likely correct. My comments are aimed as much towards other "worried but not diagnosed" readers as they are towards msradar. I would hate to see someone else skip a necessary biopsy because of what she reads here.

exbrnxgrl · December 2021

“Do I wish the process was easier and that diagnosis could be made another way? You bet. But that's for the future and I live in the reality of today.”

So true my dear beesie! We can have hope for better things to come but the present reality is what we live with even if we don’t like it.

ctmbsikia · December 2021

That's the thought I had as well reading this topic. I hope a new comer is not scared off of seeking care by reading this. Also agree with the many of us here are already diagnosed and it seems a little over the top respect wise when joining a forum as this one. I can only summarize that this poster has been through a medical trauma which most likely caused her lack of confidence in the system. She also likely has lasting issues that she's dealing with. Wishing you the best. Choosing to do more surgery is a risk which seems unnecessary to me, as is not doing future mammograms.

ParakeetsRule · December 2021

Her post doesn't even belong here, in my opinion. This forum is for people who are worried they may have a deadly cancer. She's so not-worried she plans to decline all all treatment and decline the best diagnostics. She doesn't want help. She needs to go somewhere else to rant about her personal issues with her doctors and the standards of care. This is not the place to show up and act like real breast cancer patients and genuinely worried people like Karen are just overly anxious drama queens. Several of us commenting here will likely be killed by our cancer long before she ever has to worry about it, if ever.

I wish I could have had a lot more mammograms sooner but nobody thought it was necessary and now it's too late. She's lucky they care as much about her as they do, despite the clear interpersonal issues.

LW422 and wrenn your posts made me laugh so hard.

Sadiesservant · December 2021

Here here Parakeets. I have been watching this thread with a lot of discomfort and have to say, many of you are far more magnanimous than I am. I, as most, have had experiences which were not as we would hope with the medical system but I always believe that mutual respect gets everyone where they need to be. I find it particularly disconcerting given the professed background of the OP. At one point I actually considered reporting the post as inappropriate but…

There have been a few (oddly seems more in the last year - Covid?) who have used this forum to rail against standard of care. Personally, I would be happier if it was deleted as those facing thisshitty disease don't need to think they need to treat caring clinicians as “the enemy".

msradar · December 2021

I'm sorry that I offended some here. I did not mean that patients were being dramatic. I was referring to the medical staff. They were making a big deal out of what turned out to be nothing.

Today I went back to the teaching facility for an ultrasound. I had the experience that I usually expect from them. I did not see the radiologist that I did not like before. I saw the fellow who was amazing. He explained all the pro's and cons. The biopsy is infected. I will need 10 days of antibiotics. Then I will be scheduled for stereotactic removal of the clip so hopefully, it can heal.

I was also told that the radiologist that was so sexist and rude is the best at these. So despite our personality clash, I want the best who can get this clip out and preferable without having to go to surgery.

I learned my lesson. I will stick with the teaching facility. They have far more options. My only regret is many I should have been a bit more patient and persistent and I may have found someone that would have explained all the info before I jumped ship and left them to go to the private facility from hell.

msradar · January 2022

Today I have my breast marker removed using stereotactic biopsy machine. It took an ultrasound and mammogram to find it as it was not where it was placed. I learned that the faculty that did my biopsy lied to me and told me it was mini cork only. And when they went to remove it it. It was mini cork that was surrounded with bio absorbable gel to make it stay put. So it's possible I am sensitive to the gel. Either way it's out. So it can be done. The radiologist was amazing. I will find her again if I ever need a biopsy again. We all took pictures of it. And this stereotactic biopsy procedure was far easier than the original biopsy. It's still going to pathology anyway. I had very little bleeding. The first biopsy was in the chair This one was laying down.

Elle2 · January 2022

Congratulations, msradar, in finally getting that darn clip out! I for one, am truly sorry that the experience was so difficult for you. I, too, tend to raise hackles at times because I am very focused on asking questions and getting answers before all medical procedures. I have always been that way. I do find that most doctors and staff are getting better at dealing with questions, probably because more people are advocating for themselves these days.

I think one of the reasons I have less issues with doctors is that I have many options where I live. So I take the time to research my doctors when I have a medical issue. I look at their history, where they studied, where and how long and which specialty they have experience with and even their bedside manor which some doctor sites report. I have a fabulous onco that I insisted on returning to with my second Dx. However, for the rest of my procedures, diagnosis through surgery and reconstruction, I use MDA. Neither facility has an issue with that although I do have to go the extra step in keeping both updated on my progress. My PS was blown away the first time I saw him and spoke to him. I found out he was French- Canadian, practiced in Texas, had done studies and research on nipple design and I was one of his first patients as he’d just moved to the MDA in my state. So I talked to him in French about his thoughts on the best material for use in nipple reconstruction and he almost fell off his stool.

Finally, I know this process is difficult on many levels and all of us, no matter who you are, has a right to rant, vent, and share their concerns, on this forum. Your fear is as real as mine is. Your frustrations are as valid as anyone else’s is. Your experiences are NOTHING that anyone else on this forum has experienced because we are all individuals. Therefore, your right of expression is as valid as ANYONE else’s on this forum, regardless of the outcome. None of us is perfect, and none of us is more important than any other. Thanks for sharing your concerns. I am always truly happy for good news and thankful you are cancer free!

msradar · January 2022

@Elle2. Thank you for replying. I am so sorry to hear that you too had to go through so many changes. I like to hear when others have been able to advocate and find the best solution for their situation. I had a really good experience with my neurosurgeon, pain management, and my vascular surgeons. They were always happy with my suggestions and I have had good outcomes.

I am glad it's out and the pain is gone. No swelling. It's healing nicely. They changed the post-procedure plan for me because I had experienced infection before. So far it's working well. I'm not out of the woods yet though because I am waiting for pathology since she went ahead and treated it as a normal biopsy, I also have a strange cyst that is in the right breast that they are going to ultrasound again in June. They were also shocked that a former head of breast surgery, former professor and had mentored so many had sent me away with an infection. The faces when I told them what happened and they asked who was the surgeon. Its like starting all over again. I plan to stick with this team. They seem to be ok so far. Though she did give me the eye when I told her I would be repeating my thermogram in 3 months or when the doctor over there says it's a good time. She gave me the same speal about how its not a replacement for the standard of treatment mammograms. I told her, that is good but they will continue because they found issues never mentioned and found the cyst that you know want to follow that you missed because you only did the mammogram and did not order ultrasound of both breast cause you were too stuck on my calcifications in the left breast only. She got quiet.

Frustrated with this process.

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