STEAM ROOM FOR ANGER
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I know that’s what worries me!
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Call from insurance. Tests ordered by doc denied and they need more information before they can approve. Of course meanwhile we wait. Hate dealing with insurance. Tests cost a fortune if you cant' get approved.
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Hey all. So I am frustrated how I just don't feel good anymore. Let me explain. Today a group of guys from my church came to my house to do some yardwork I have been neglecting. That is their mission, to help people in the congregation. So I didn't just want to be sitting in my house as they worked so I sat outside as they worked and chatted with them some. It was hot and humid today but I sat in the shade. Well even sitting and doing nothing I was sweating. Then I felt kind of dizzy. I toughed it out and stayed outside with them. Good grief !!!! I used to be the one out there weed eating and power washing the house. Where did those days go ??? I cannot do those things anymore, I cannot do anything anymore. Even sitting in my air conditioned house I feel fatigued a lot. And sometimes I have episodes of nausea or dizziness--- episodes of what I call "feeling plain unwell". Does that make sense? Does anyone else feel like that -- just unwell, like things just are not right in your body? I know several on this site post about doing things with kids, grandkids, friends. How do you feel well enough to do all those things? I envy those who can. My scans show "stable" and my blood work is ok. But I certainly don't feel like I used to. Is it the meds we take to keep the cancer at bay? Just frustrating and kind of sad. I feel like 1/2 the person I used to be. Thanks for letting me vent.
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Candy, I feel EXACTLY the same way. Scans stable, blood work okay, but I feel SOOO tired and like S*&T all the time.
L
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I feel that way quite a bit and my drugs are targeted. I think the years worth of drugs, radiation etc really do take a toll. I am also NED from the neck down, my brain is stable and shrinking but I am still super exhausted. If I don't exercise in the morning when I have some energy, I cannot really do much more which is a shame. I also know after my mother died, the grief was hitting me hard. Cancer sucks in everything it takes away and no matter what kind of treatment we are on, being on them for years is difficult. I've had Herceptin for four years and Herceptin plus Perjeta for three plus periods of radiation in between. Crazy to me that I am conscious at this point to be quite honest.
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Wouldn't it be great if the drugs we take actually made us feel better!
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Makes me feel a little better I am not the only one feeling bad. LOL. Just getting very frustrated feeling bad all the time. I want my old self back. My PCP ordered a blood test to check my Sed Rate--inflammation--due to the autoimmune issues I have. Saw results today on patient portal. Normal range 0-20, mine was 60. Well I wonder if this is one reason I feel bad !!!! A lot of inflammation going on. I have had it checked various times since diagnosis of autoimmune issues in 2014. This is the highest it has ever been. Of course, no call as of yet from PCP.
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Candy, when I feel like everything is 'off' (not the symptoms you describe but things like it) I take 2 Advil. 400mg ibuprofen. And lo, I feel a lot better. Even though I'm not in pain or have a fever. I guess it dampens the inflammation kicked up by the drugs.
You might try -- can't hurt, might help. But the heat and humidity are probably make everything hard.
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it would be great to know if meds are even working!
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I read about people having breast MRIs and I am puzzled. When my one mamm came back saying 'something weird and possibly evil is still in your boob after the lumpectomy and radiation', and I lost my shit, I asked my radiation oncologist if maybe an MRI wouldn't clear things up and said HELL NO! She told me to AVOID an MRI until every other avenue of investigation had been exhausted and this is how she explained it: Surgery and radiation cause scarring, a disruption in the natural flow of things. Cancer also causes a disruption in the natural flow of things. When you have an MRI they inject a dye (contrast ) into you and watch to see how it flows. If it hits cancer, the flow gets all screwy and blocked looking. If it hits radiation and surgical damage the flow gets all screwy and blocked looking. SO it can be very difficult to tell the difference between a blockage caused by surgery and radiation or a blockage caused by an invasive cancer. So, does this clear up any confusion? NO! In fact it can make things even MORE confusing. Rad onc said to have another mamm in 4 months and if there were ominous changes THEN proceed to MRI. But not before. 4 months later the mamm showed that the mess was shrinking, so they deemed it radiation and surgery damage, since untreated cancer does not generally shrink.
Jaycee, in Canada, MRIs are covered if you wait for your appointment, 6 months to a year hence. If you want results faster you can go to a private MRI clinic and pay for an MRI and the price varies clinic to clinic and for how big an area they are looking at. I had one about 8 years ago, armpits to hip bones and it cost $1500. BUt that was a pretty big picture. Result: at that time I was medically boring. Nothing going on. Oh how I wish I was medically boring now.
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runor- I had a breast MRI before surgery or chemo. My BS wanted chemotherapy to be done first because my tumor size was hard to tell (dense tissue) and to shrink the tumor down to a size that she could get good margins with a lumpectomy. MO wanted it staged before chemo to determine the chemo protocol. So I had an MRI to better determine the size and extent of it. The main reason I was told that an MRI is not always the best option is that you change the a lot of false positives
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runor, I'm in Canada too, Ontario in my case. When I was diagnosed and my BS ordered an an MRI, I had it done within a week. Other people I know who've had MRIs for cancer diagnosis have also been scheduled promptly. When I was getting regular MRIs as part of my annual screening, because it was a non-urgent requirement, I knew that the wait would be longer. So I would get the requisition in for the appointment about 2 - 3 months before I wanted it to be done, stating when I wanted the appointment, and I always was scheduled for the MRI right when I wanted it. Obviously the process and timelines are different in different provinces and cities, based on their guidelines and the availability of equipment, but a general statement that it takes 6 months to a year to be scheduled for an MRI in Canada is not accurate.
When I was diagnosed my BS ordered an MRI prior to surgery to ensure that he knew as much as possible about what was going on before he operated. The MRI did show a larger area of concern than what had shown on my mammogram, and the MRI turned out to be correct. Fortunately the entire area was DCIS, not invasive cancer, but it did need to be surgically removed and it's what led to my decision to have a MX rather than a lumpectomy. Right decision.
After my UMX, I continued to get MRIs for quite a number of years, at the request of the Radiologist who did my mammograms, because of the density of my breast tissue. The MRI was used to check my remaining breast, and it verified that the implant on the reconstruction side was intact. After a number of years, when my breast density declined, MRIs were no longer recommended.
MRIs certainly have their value and their place. They do tend to present false positives and 'incidental findings' - I had that one year when a spot showed up on my spine that possibly was mets, but fortunately wasn't - but MRIs are also quite good (but not perfect) at detecting breast cancer.
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I had an MRI prior to surgery. My MRI picked up a second tumor. Which changed everything from a lumpectomy to a double mastectomy. My oncologist did tell me after surgery and chemo an MRI would not be ordered unless I was having issues or if my labs were real weird. And he stated as runer did above about the scar tissue sending out a lot of false positives. Since I had surgery prior to chemo I have no way of knowing if the chemo worked. I just continue to live my life everyday. I did get a second opinion regarding the MRIs post-chemo and the responses were the same no MRIs unless something's weird. I have to be honest when I have an unexpected pain, cancer thoughts do come up. The pain usually goes away within minutes then I'm back to normal.
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The protocol here (PA) is to alternate MRI and Mammo every 6 mos, (EDITED for lumpectomy/rads patients) and then yearly once you're out at least 3 yrs, up to the 5 yr. mark. Then I'm not positive but would think it's annual mammos. after the 5 yrs.
When I read my MRI results last week and saw this "probably benign" I thought, wtf kind of terminology is this? So I had to look up, learn, and try to comprehend the BIRAD scoring system. I read a whole study on it. I can dig it out of my archives if anyone ever needs it. While it was interesting, it is something I wish I could have gone through life not knowing. If I comprehended it correctly, getting a BIRAD score of 1 or 2 is ideal/normal. 3 is the -hey there's something there and its probably benign. In the study I read, 3 is a 0-2% of it being cancer. It also emphasized that this category 3 is NOT to be used as a catch all for abnormal findings. The next category 4 is the suspicious score which biopsy is recommended. 5 and 6 are confirmed malignancy's. It's possible/probable I may score a 3 again on next imaging even if this seroma has resolved as they have to use the past comparisons (thus the shorter intervals) over a period of time (12-18-24 mos.) to prove stability before I can score a 1 or 2 again. This thing wasn't there in Dec. and my score was a 2. It is sort of amazing what all this imaging tells us and I do trust that it is being used efficiently in our diagnosis and treatments. This was only my 2nd MRI, I had one before surgery also. Well, I did have a MRI guided biopsy on my right (LCIS) side.
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ctmbsikia, just a small correction. BIRADs5 means a 95% chance of cancer. I've been on this site for a long time and have seen many women who have fortunately fallen into that 5% who've had benign results. Usually it's something like a radial scar, which has the appearance of breast cancer on imaging. BIRADs6 is a confirmed malignancy, usually given to imaging done after a biopsy has already diagnosed cancer.
I've spent my life getting BIRADs2 and BIRADs3. When I finally got a BIRADs1 (woohoo!!), I was diagnosed with breast cancer 3 weeks later, thanks to supplemental imaging using a different imaging modality. How about that. But it shows that each modality "sees" something different, so particularly for women with dense breasts, it's important to have screening with at least two different screening modalities (mammogram, ultrasound, MRI).
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To be clear, it was AFTER radiation and surgery that my radiation oncologist told me an MRI would muddy the waters. I was not given nor offered an MRI during the diagnosis stages. She said that in my particular case (three surgeries on that breast) there is likely to be scar tissue and it would likely send up all sorts of warning signals as the contrast dye would NOT flow through it freely and that would no doubt trigger a potential false positive. So she suggested NOT having an MRI until I'd had another mammogram. In her words, with my particular situation, an MRI would be the last resort.
Beesie, yes, wait times province to province vary greatly. If you are a known cancer patient and they see something suspicious on a mamm and the doc orders an MRI, yes, you are likely to get in quicker than 6 months. Or not. Understand that I live in a rural area and the hospitals that have this equipment take in a HUGE catchment area. Wait times can be very long. When I had blood in my urine the doc ordered an US on my kidneys and bladder. I waited 6 months for that US. Yes, people do wait that long, and longer, for MRIs. Depends on the doctor's assessment of urgency. People around here are NOT happy about it but do have the option of paying for and MRI at the private clinic.
Edited to add, 2018 stats show that BC has some of the longest wait times. In BC in 2018 the average wait time for an MRI was 20 weeks compared to the national average of 10.6 weeks. I have friends and relatives with other problems (not breast cancer) who have waited 8 or 10 months for an MRI. In BC we wait an average of 6 weeks for a CT scan which is 1.7 weeks longer than the national average.0 -
Thanks for the correction Beesie. My learning and comprehension skills aren't what they used to be! Your posts have been very helpful to many on this site. You are very knowledgeable and I thank you, again.
runor, how do you stand the waiting? Once you are tested, how long for results? Is that wait time similar to the US? Is there much private testing and health care going on in BC?
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ctmbsikia, thanks!
runor, I understand that you've had some terribly long wait times. That does happen in Canada - oh, and sometimes in the U.S. too. Your experience, in rural British Columbia, is your experience. My experience, in metro Toronto, is my experience. Neither of our experiences are representative of what happens in Canada because what happens in Canada can run the gamut from incredibly good lightening speed service to incredibly poor, molasses slow service. I'm sure we'd find the same if we did a survey of our neighbours to the south. So I'm not denying that sometimes people in Canada have to wait 6 months for an MRI; I'm only saying that we shouldn't imply that anyone's individual experience is representative of "Canadian healthcare". We never see posts like that from members in the U.S., but we see it all the time in posts from members in Canada. "Well, I'm in Canada, so (fill in the complaint)." Of course there are some common issues within provinces and there are some common issues for those living in more rural locations. But there are big differences as well, based on where one lives (city vs rural, and which province) and the quality of one's doctors (there are excellent doctors and crappy doctors everywhere - I happen to have a fabulous GP who makes things happen really quickly). A family member who lives in Quebec has had to wait much longer than me for MRIs, but was able to have a leading edge experimental treatment (not related to breast cancer) which is not available without paying to another family member here in Ontario who has the same condition.
All that to say that our experiences are unique to our own situations. Canada is big and diverse and results may vary depending on the situation.
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Thank you Beesie for your remarks about Canadian health care. Like runor, I too live very rurally but have had incredibly good care for the past 10+ years. I waited 2 weeks for an MRI. Now they booked me at an incredibly inconvenient time but I cancelled my DH's surprise birthday party to get it anyway. I get a CT scan & bone scan every 12 weeks. I needed to see my GP last week, called on Thursday to make appt, saw him on Friday afternoon. So I know I am very lucky to get this kind of service but I also work at making it happen. I take homemade cookies to all "my team" a few times a year. I never complain if they are running late & I rarely ask to have my appts rescheduled but they know if it needs to happen it's for a very good reason.
I am having an issue trying to get my implants replaced because all the PS are scared to take on a healthy stage IV patient who needs to have them replaced. But my GP & MO are working on it. I guess there is too much private $ for boob jobs & tummy tucks to worry about taking care of cancer patients.
Runor, are you able to travel out of your area for an MRI? While I found the care in Victoria was ok, when I went on a drug trial in Vancouver, the care was better & the travel easier. My MO in Vancouver seems to be able to get almost anything booked almost immediately (except the implant exchange)
***edited to change my error from scans every 4 weeks to every 12 weeks
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gg27- did I misread the above statement? You have CT scans every 4 weeks? I have never heard of scams being done routinely every 4 weeks. Is this common for stage 4 breast cancers? Please verify this is correct.
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Beesie you are correct that medical experiences vary widely across the country and I do think it has a lot to do with how proactive your doctors are. We Canadians like to complain about the weather and the medical system (today, June 20, I had to light a fire in the furnace to warm the house up, it is COLD!).
GG27, to be clear I do not need an MRI. When I did, years ago, for an unrelated issue, rather than wait I paid to have one done at a private clinic.
My actual point was not about wait time anyway. It was that some women are having MRIs to get a clearer picture of what's going on in their breast, but my radiation oncologist strongly advised AGAINST having an MRI because the messed up burger that used to be my breast would likely give a bad reading, with all that constrictive scar tissue, and not clarify anything at all. My point was that I was given medical advice that seems to be the opposite of a lot of other medical advice. It was just an observation that I find this interesting.
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my surgeon said not to get an mri because of too many false positives... is the mri only for those with dense breasts?
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jo6359, no I made a mistake, I have a CT & bone scan every 12 weeks, I get tumour markers every 4 weeks. I've been on drug trials for 4 years now, it only seems like every 4 weeks.
runor, I am sorry about your messed up breast....
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Post-Treatment Surveillance Recommendations for Women Treated for Primary Breast Cancer
Year History & Physical Examinations Mammography Other Studies American Society of Clinical Oncology (11, 58) 2012 Every 3-6 months for first 3 years Posttreatment mammography 1 year after initial mammography Chest radiography, bone scans, liver US, CT, PET, MRI, or other laboratory tests: not recommended in otherwise asymptomatic patient with no specific findings on clinical examinations Every 6-12 months for years 4-5 Annual follow-up thereafter At least 6 months after completion of radiation therapy Yearly mammography evaluation, unless otherwise indicated National Comprehensive Cancer Network 2013 Every 4-6 months for 5 years, then annually Mammography every 12 months MRI considered in women with lifetime risk of second primary breast cancer greater than 20% Other tests not recommended European Society of Medical Oncology (1) 2013 Every 3-4 months for first 2 years Ipsilateral (after BCS) & contralateral mammography every 1-2 years MRI may be indicated for young women with dense breasts, genetic or familial predispositions Every 6 months from year 3-5 Annual follow-up thereafter Other laboratory or imaging tests not recommended in asymptomatic patients 0 -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC43472...
It is interesting. I haven't read all of this yet, and I am not sure if this is the most current.
Anyone know how they determine your risk? One of the tables indicates: MRI considered in women with lifetime risk of second primary breast cancer greater than 20%. Gulp. That's me. I read this on my last report. Seems that dense breasts play a factor as well.
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DAMN THIS DISEASE !!!!!!!!!!! DAMN IT TO HELL !!!!!!!!!!!!! One of our dear sisters - Gracie - on the Liver Mets Thread just posted she is in liver failure and talking hospice. After just 2 years of MBC !!!!!!!!!
I AM SO ANGRY AT THIS DISEASE. WHY CAN'T THEY FIND A CURE. IT IS UNACCEPTABLE. AND SO UNFAIR.
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candy- how horrible. It is so unfair. Whenever I read one of these posts it makes me Furious and scared. You must have had a connection with your friend Gracie and my heart goes out to you for your loss.
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I am so sorry! It is such a nasty disease!
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I had a coworker who got diagnosed with esophageal cancer and was dead within weeks. I'm so sorry about your friend Candy.
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I had a coworker who retired and was dead in 6 weeks from pancreatic cancer to my knowledge she didn't know she had cancer till the end. So glad to hear Alex Trebec is almost NED, wonder what his drug treatment is.
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