Bone Mets Thread
Comments
-
Sadie and KBL yes I too have felt like people think either I am a hypocondriact or that I am exaggerating...like with the pain I still have from the Y90...and NO ONE ELSE in the whole world seems to have had this issue....It makes me feel like they think I am just whining or complaining...meanwhile before all this crap....I had Septum surgery, nose broken no pain meds...teeth pulled, tubal ligation, double mastectomy all with no pain meds I thought I had a pretty high tolerance for pain....along with the fact that i didn't want to be consitpated (my other on going issue) by pain meds so I never took them...now going through this I felt like they were thinking..."really.,...you STILL have pain? no one else did this long"....
. Just stuff we gotta deal with I guess.
0 -
I get the "hypochondriac or exaggerating" thing. I was talking to my sister on the phone last night. Told her about the shoulder issue I am having. I have had pain in this shoulder for over 3 years--- slowly worsening. Keeps me up at night. Cannot turn to lie on that side. But..... I live alone. No one to see me struggle, no witnesses. I feel she thinks I am exaggerating the pain. Maybe not. But I feel like she and others think I am a hypochondriac for going to doc and getting first an x-ray then an MRI. I do not want anything bad to show up on the MRI... but then I do. To prove why I have been hurting. IDK. Maybe I overread things. Overthink.
KBL- I hope they can find out what is wrong. If we know what it is, we can have a plan to deal with it.
0 -
it is wonderful to not feel alone on the hypochondriac front, although I wish none of us had to be here.
You won’t believe what happened. I wrote the hospital and basically begged to talk to the radiologist. I was shocked. He called me this morning. I’ve never spoken to any radiologist whose done all of my many scans. He spent 20 minutes on the phone with me while I asked him tons of questions. He was satisfied that I did not have bilateral hydronephrosis because my kidneys get dilated when I have urine in my bladder. Problem solved there.
I asked him to look at my CT from January and compare it to my MRIs. He was astonished. He said if it was just the CT, he would have passed right on by it. Then he said, I do not want to alarm you but your bone marrow is infiltrated with cancer in your cervical, thoracic, lumbar, pelvis, and femurs.
None of that shows on CT. Is that not scary?
I said it’s also throughout my stomach and then asked him how I am alive. He said because I’m a strong woman with a support system.
Here is my problem. I’m at a crossroads. Do I switch to the next line or stay on what I’m on? There is no evidence up to now that I’ve progressed. He redid the report to finally ask for the abdominal MRI I asked for in October of last year. Now it should be covered by insurance.
Nicole, I’m so sorry you still have such awful pain.
Candy, I’m sorry about your shoulder pain. Hopefully the MRI gives you the answer.
When I first started this journey, I couldn’t eat more than a few bites and had lost 17 pounds very quickly. I was holding steady with my weight until this last week. I’m down five pounds. I have to find out what’s going on. Back to the gastro I go.
The constant doc appointments and imaging is getting so old.
I feel better mentally today, and I’m ready to continue to try to stay here as long as I can. I still hurt and need to figure out what’s happening.
Hugs to all of you.
0 -
WELL DONE, KBL!!! Perhaps you have now even enlisted an ally in the fight! Good luck with the MRI-
0 -
KBL I am so sorry about what you are dealing with, I hope you feel better and get some good plans for your treatment soon. It is ok to not be ok, specially for us. at the same time I am happy for you that you pushed for mri, and got to talk with the radiologist. Sending you hugs.
BevJen, thinking of you, I hope things are going to be better, please update here when you can.
Nicole, thinking of you, you've been through a lot lately, hugs
I've been away from the board because I've been in pain since late January and tired of this. I felt I just venting here and it is not fair to you. Candy same as your MO, my MO is too not interested in talking about bone Mets, finally I could get a referral to see a RO, see what they offer.
0 -
KBL, I am so happy you finally found someone who is giving you the attention you need and deserve. I applaud you for reaching out to the radiologist.I understand the issue you have about treatment -whether to change or stick to current. Maybe the MRI will help. If not, I think you will have to have a serious conversation with your MO to find out the best road forward. I am glad that you are feeling a bit better about things, and I hope that things get sorted quickly. You deserve to find relief from all you have been going through.
Hugs and prayers from, Lynne
0 -
KBL, excellent job of advocating for yourself! I cannot say whether you should continue with current treatment or change and I'm sure your doctors can advise you. You are tuned in to what's going on with your body and that will help you make your choices.
Jsniffs, I haven't had radiation to spine mets so I cannot answer your question regarding the matter. If it were me, I would search the forum to see if there is any info on other threads, or even start a new thread posting your question about it.
Candy and others, here's how I'm learning to think about whether others think I'm being a hypochondriac. We are so conditioned as women to minimize our issues, to make ourselves and our problems small and insignificant. I don't need my troubles to always take center stage, but I also am no longer worrying about others thinking I'm making things up or exaggerating. We know we are sincere about how our own body feels and for those who don't or can't sense the sincerity, f*** 'em. We do not need to apologize or defend ourselves. It is sort of a different take on advocating for ourselves. Speaking our truth. Yes, I can be polite and kind and refined, but I have a tough side, too, and I'm proud of it.
0 -
Wow, KBL. For the CT's not to see the extent of the bone mets--- throughout your bone marrow. That is scary. What are our scans are seeing and not seeing?! Hope you can find the next path, and feel confident in it.
Snow-drop--- I have wondered about you. Weren't you going to get a spine MRI? I hope the RO can help you.
Divine- I wish I had your attitude. People have told me not to let what others think bother me. But they do. Pain is so subjective. No one can feel each others pains. And with living alone, no one sees me struggling, say to sleep or bend over to get something. And they cannot feel what I feel. And I think that they think since the cancer I am just looking for issues. Or wanting them to feel sorry for me. For instance, the other day I had pain in my right side (liver area???). I hurt for 14 hours straight. Pain about a "4-5". I wondered about calling doc. But, NO, I don't want to be a hypochondriac. Better now, but I wonder what it was. Yet again, alone, except for you guys so no witnesses to the event.
0 -
candy, some of my attitude comes with age. I think once you are of a certain age you become more immune to what others think. And it’s still a work in progress for me, always. Some days I’m better than others at not caring what others think. I’ve spent the last year reestablishing boundaries with my siblings. The pandemic guidelines came in handy for that as I had a ready made excuse for avoiding gatherings with them. It also gave me lots of time to reflect on how I’ve allowed them to put a lot of constraints on me. They don’t want to acknowledge I’m not who they expect me to be. There’s that saying “stop trying to squeeze yourself into places you’ve outgrown.” I do my best not to let others squeeze me into those little boxes, either.
And you certainly have a point that as you live by yourself, others don’t readily see all that you contend with. I do want to say you should feel proud on many levels for taking good care of yourself and being able to roll with the punches, whether they be from mbc or life itself (like the pandemic!) even tho it is many times difficult. Not everyone would be able to do that.
0 -
In your pocket, Candy.
0 -
Thank you all, again. You are all my friends here who help me every day, and I appreciate you all beyond measure.
Candy, I'm sorry for your pain. Why does the pain come and go or move around? It's just so weird. It is very scary that the CTs don't see anything. When they say lobular is sneaky, they aren't lying.
I told my husband he should have me autopsied to see where else it was, but he said absolutely not.
0 -
Update on my shoulder---
MRI shows no cancer per ortho (though I have the CD and having my MO/ radiologist at cancer center check it during next Monday's appt). No avascular necrosis (from Xgeva use for over 3 years). No fracture.
It does show the partial rotator cuff tear (from 2017) still. And arthritis with inflammation and fluid build up.
Recommendation: a steroid injection per radiology--- intra articular injection per fluoroscopy. I have to ask MO about that with my low white counts from the Ibrance. Then PT treatments on the shoulder.
Ortho doc said that is what she would recommend for "QOL pain control".
0 -
Candy, I'm so happy it's not cancer. I've had cortisone shots before in my shoulder for calcific tendinitis. It hurts, yes, but, boy, did it make a difference in my pain level. I hope you can get some relief.
0 -
Candy, I'm glad to hear you are making progress on getting answers for the shoulder. And yes, I also identify with the feeling that people think of me is a hypochondriac. Also feel for you the difficulty of people not seeing the considerable labor it takes just to live daily life with this disease.... the extra time everything takes is definitely hard to visualize unless people see it. I hope anyway these new answers bring you some relief with the shoulder.
KBL, that's a wonderful story with the radiologist. It's great to feel like someone is willing to hear, look out for you, and recommend what you need. I hope he's able to continue to help you advocate for yourself!
Thanks for all the stories about moving forward with Ibrance. I went for a specialist second opinion out of town today, and among other things was impressed with the doctor's optimism about the possible effects of Ibrance/letrozole on my cancer. At the same time he took more seriously than the local onc the lack of attention paid to the primary cancer. The third doc who has felt a small node (1.2cm) in my breast, he said he would look at my previous images and see if there is anything to use as a baseline to see how it reacts to the drugs, since it is not so easy, apparently, to identify success of treatment or, alternatively, progression in bones.
0 -
Hi all,
There has been very little discussion on the oligometastasis discussion, so,I feel more comfortable posting here. I have only one lesion on my L1, but it is 4cm by 2 cm, and is impinging upon my spinal cord. It caused my left hip to have a sharp pain that my doctor followed up on, or I may not have been diagnosed yet, although tumor markers were creeping up.
Treatment has begun with starting on Letrozole (again) on April 2nd, first infusion on Zometa today (insurance wouldn’t cover Xgeva), start Ibrance this coming Sunday, and go for CT simulation for 14 fractions of regular radiation this coming Monday.
Letrozole has again caused joint pain, fatigue, and cognitive decline. I am planning to go out on disability in May because I can’t remember words when I am speaking. It is frustrating, to say the least. I am ready to be “retired” at age 59.
So far, the Zometa isn’t giving me any side effects, but I took Claritin and Tylenol before I went for the infusion. I ate asparagus for dinner, trying to be kind to my kidneys because the nurse said Zometa is especially hard on Kidneys.
I am very thankful for this community. I learn so much about what to expect, how to lessen the side effects and all the love and encouragement from those going through similar circumstances.
Fairy Gidmother
0 -
Thank you, prairiesea. It is good to finally speak to a radiologist. I’m glad you went for a second opinion. I know for me seeing progression is almost impossible. It has to come down to how I feel.
FGodmother, that impingement sounds awful. It’s so weird how differently this disease can affect each one of us.
I understand about retiring at 59. I was 58 last year in May when I had to leave. I don’t regret my decision. Some days are hard to even pick my feet up and move with such low energy.
0 -
Good to hear something positive about a radiologist. I found out on Thursday when I went for my CT scan, it was the same radiographer who did my scan in January when my lung was a ‘ whiteout’ - I knew he’d taken steps to get the senior respiratory nurse, who is amazing, to immediately look at that scan and she pulled out all the stops to get me admitted and the lung drained.
What I didn’t know until Thurs was that he’d actually shown the scan to the radiologist beforehand as per protocol who, without speaking to any of my team or me, told the radiographer to send me home without treatment because ‘ she’s stage 4 and the whiteout is because of progression, so send her home’. Apparently I’d been the second patient that day the radiologist had made that same decision about. The radiographer had remembered I’d said I could walk 8 miles and more only 3 weeks previously and was angry that my and the other patient’s QoL hadn’t been considered, so he took matters into his own hands, for which I’m so grateful.Considering now what to do about that radiologist effectively playing God...how very dare they!
0 -
Karen, I had a similar (but very different) experience 30 years ago at first diagnosis. I had to have a needle biopsy, and was, as all of us are, terrified. The radiologist who performed it was quite simply a sadist. He suggested no numbing, as a "stick for numbing was the same as a stick for the biopsy.".....wrong. Because of location, he had me standing bend fully over in a "U" under strong compression of my effected breast. I could only see the tip of his tie and his lower body. I was in huge pain as well in a painful position. A nurse knocked on the door to speak to him, and he left me that way to step out to speak to her. THEN, after straightening me up, another knock: a nurse needed (and this was stated clearly within my hearing) to use the machine to look at a lump removed from a patient still on the table so that that doc could proceed. The radiologist asked me to step into the corner while they brought this bloody item in on a plate for examination. I was entirely traumatized by the event...it was my worst experience during my whole mastectomy/reconstruction/chemo process.
Bottom line: I wrote a very detailed explanation and complaint to the hospital at which he was engaged, and I found out later that HE WAS FIRED!!!! There is, ocasionally, some justice.
0 -
Thank the Lord, Candy...good news!
0 -
Wow Lynn that’s a shocker!
0 -
Sometimes you get the right person's attention! The hospital did not tell me this. I found out later from another radiologist. It was never confirmed that my letter was the immediate cause, but it surely didn't help his career!!
0 -
Karen and JoynerL, I would have had somebody’s head rolling. I can’t even imagine. I’m glad the guy was fired, whether it was because of your letter or not. At least they did the right thing.
0 -
Wow. I have been so fortunate to have pretty good care throughout. Some things have not been a barrel of laughs... I likened the original punch biopsy to being harpooned ... but so far nothing traumatic. I'm sorry you both had to go through that.
Following the discussion but a bit behind but I wanted to comment that I think the universe may be giving me a nudge. I've continued to work full time until last October when I decided it was time to scale back a bit. I have now been approved for long term disability (in my job we have to get through six months of short term disability) but have been intending to continue to work part time. I find it tough to say “I can't work" but I do find there is a lot more fatigue and, like you FGodmother, I have really noticed the fuzziness and inability to recall things. I am wondering if I should just throw in the towel altogether. Thankfully there is a lot of flexibility with the plan so I can take more time if I need to as things unfold. Oh... I turned 59 yesterday - amazing that the three of us are all so close in age!
Edited to correctly attribute comment about cognitive decline. Ironic. Ha
0 -
Happy belated birthday, Sadiesservant. Yes, it is amazing about our age. I will be 60 in July, yet in my head I’m only 25. I’m sure you all know what I mean.
0 -
I’m 56 and I retired from my job in education a year ago after continuing to work FT for a year and a half after my diagnosis ( taught for 28 years in the same authority and worked at head office as a development officer since 2012). The job was stressful and full on but I enjoyed it and like to think I did a decent job. I certainly worked hard enough!
Took 6 months off sick as they paid me FT and retired through ill health on April 30th 2020 4 weeks after full lockdown....no retirement ‘doooo’.....nothing at all to mark 33 years of service....I just walked out the door in August 2019 and that was it, because I couldn’t tell anyone I was planning not to return from sick leave. I was upset about that. However, the pension agency awarded me the top level of enhancement on my pension, after several medical reports submitted, so at least financially we were OK.
Luckily many of my work colleagues are keeping in touch and some have also retired as normal, so at least I haven’t lost all my social contacts too!
0 -
Karen, I’m sorry you didn’t have the proper send-off. I’m so glad you get to keep in touch.
I’m sure you know you can also file for Social Security Disability as a compassionate allowance since you had to stop working and are Stage IV, but I wanted to make sure.
0 -
Saying hello while I am awake. Still at hospital -- surgery for R hip replacement on Monday, to be followed ? with a pin in the L side.
Feeling pretty crappy stuck in the bed here, but did get to talk to a couple of friends on the phone today. That was uplifting and very nice.
Hello to everyone -- I'm trying to keep up.
Bev
0 -
Hang in there, Bev!
0 -
Bev thanks for update, here is good thoughts on your way (((hugs)))
0 -
Candy, that is a relief, I am happy for you that it is not cancer related or se of xgeva, and I understand the pain sucks, we are at a point that take anything but not cancer. I hope that your care team will get you a good treatment plan. Btw, I could get mri appointment for tomorrow at 7 am! Thanks for asking.
0
