STEAM ROOM FOR ANGER

jo6359

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.

ctmbsikia

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.

Beesie

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).

runor

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.

ctmbsikia

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?

Beesie

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.

GG27

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

jo6359

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.

runor

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.

april1964

my surgeon said not to get an mri because of too many false positives... is the mri only for those with dense breasts?

GG27

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....

ctmbsikia

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

ctmbsikia

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.

candy-678

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.

jo6359

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.

bennybear

I am so sorry! It is such a nasty disease!

DogMomRunner

I had a coworker who got diagnosed with esophageal cancer and was dead within weeks. I'm so sorry about your friend Candy.

Meow13

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.

candy-678

Thank you all for letting me vent. I don't really know Gracie on the Liver Met Thread. She is one of us - virtual friend and MBC sister. When I read her post about the liver failure and hospice it just got to me. For her - she was just diagnosed 2 years ago with this horrid disease-, for her family, and Yes I thought of myself. Why does this awful disease have to prey on us?? I know we hope for a cure, and say "we are living with MBC and not dying from it" , and that it can be thought of as a "chronic illness". But ladies are dying from it. Which one of us is next?? How long do I have?? So sad.

mara51506

I just say I am living with it because it helps me to focus on just living and not dwell on what I have lost. I am very pragmatic and unemotional for my own cancer after dealing with it going into 4 almost 5 years.

I have to be careful not to allow myself to go into dark places because it is so debilitating to get myself out of them and I live on my own and not very social (my choice). I have my older brother and his family but no close friends. Tons of acquaintances though.

Overall, I just found that when I thought "I'm dying of cancer, I could not get motivated to enjoy my life at all. By saying I am living with it to myself, it helps me get out of bed, exercise and take care of myself. I also don't focus on my cancer either.

I do however resent it when stage 4 cancer is presented as a chronic illness. Until there is a cure that will stop us from dying, it certainly is NOT curable and eventually will be terminal for us. We just don't know how long we have. I also do NOT want to know how long I have left.

candy-678

Mara- I know we all have our own ways of dealing with this. And none of them are wrong. Everyone has to handle it the way that is right for them. I don't judge anyone. I feel I am a realist- I will die of cancer someday. Yes it gets to me sometimes,heck a lot of times. But I still get up every day. I still clean my house and go grocery shopping. I am going to a cookout this evening. But golly, I have cancer. Just seems so unreal sometimes. So unreal and so sad.

mara51506

I totally agree with you Candy. Just from some of the people I know from the cancer clinic some are very dour, negative and yet I still see them hangin on without looking worse for wear. Seen plenty of positive thinking people pass away. Our reaction does not dictate how everything will go for us and we each must navigate in our own way what works best. No one can or should judge how we go through it or what we can or cannot do in our daily lives.

jaycee49

I needed to post this and picked this thread because it made me really angry. If you are in a trial, I guess you need to check what happens when it is over and the drug worked.

good (short) article

ARC

Hi Mara and Candy,

I've been lurking on this site since 2014, but haven't checked in for a while. I agree that everyone has a different way of dealing with their own cancer. Since I always feel sick, I wonder if people ever feel "good" about saying NO to anymore treatment. I feel that those not dealing with cancer would judge and think a person has given up. What are your thoughts?

Hugs

runor

ARC in one short paragraph you pulled out the hammer and whalloped out a big one. Good for you!

Is refusing treatment, saying no, giving up?

I etalked with a friend for almost two years as her pancreatic cancer progressed. She described her life to me. It changed. The things she enjoyed doing and used to be able to do, changed. She made the adjustments she had to, but then those weren't enough. Slowly and with increasing pain her life eroded to the flood waters of advancing cancer. She said she had turned into that thing she had never wanted to be, a walking, yellow, shrivelled bone bag of cancer. She started out around 140 pounds and was under 90 by the time she died. The tumours in her guts were enormous and bulging out, pressing against her skin. She was in constant pain. The pain got worse. She couldn't keep food down. She couldn't keep water down. She began vomiting up the waste that could not make it through her blocked guts and out the other end. She called it sewage puke. SHe made arrangements to have herself euthanized, legal in Canada. The mandatory 10 day wait period from request to day of appointed death was gruelling.

Her husband told me he will never forget her blue eyes and that she WENT OUT ON HER OWN TERMS!!!!! And if my bold lettering option worked I would bold that. I am offended, horrified and pissed right off at the dipshits who think that dying is giving up! We're ALL GOING TO FRICKING DIE! Just how much torture must we endure so that someone else's measure of 'fighting the monster' is satisfied? They're not living with cancer or through cancer. They literally have NO CLUE. And most important they have NO SAY!!

Let me be blunt. By the time someone is puking up their own shit, dying is a mercy to everyone involved. I do NOT ever want my family to have to watch me do that. Why? Because that stays with you the rest of your life. It's a horror that you can't unsee. It's a curse that you place on your loved ones by mindlessly fighting a fight you are never going to win. It is my belief that at some point knowing when to say enough is enough is the ultimate act of humanity and bravery and I ADMIRE those who can do it. Those who say no. Enough. It stops here, it stops now.

I object to obituaries that say 'she lost after a brave battle with cancer'. That's not what my obit is going to say. It will say Runor did what the hell she wanted and when cancer got the better of her, she checked out when she bloody well felt like it. Cancer may have chosen the music, but Runor decided when the dance was over. I will call the shots. I will not give up my autonomy and right to do so. Nothing about dying is giving up!

jaycee49

ARC, I'm not where you are because I don't always feel sick. But when I do always feel sick, and I guess that depends on how sick, I will say no to treatment. I will not feel good about it. I will feel sad about it. I will feel devastated about it. I will feel angry about it. But I will not feel guilty about it. I will not care AT ALL how others, cancer or no, judge me. And I will not judge myself. That will be my choice and I will make it. I just wish we had the choice that Runor's friend in Canada had.

marijen

“Cancer may have chosen the music, but Runor decided when the dance was over. I will call the shots. I will not give up my autonomy and right to do so.“

So runor, does this mean you won’t be asking the bureaucrats for permission? :

mara51506

ARC, I do think a lot of people who have not had cancer or a chronic or serious disease would totally judge UNLESS they were family/friends who knew the patient. It is really hard to understand that a person can be really sick (even if they look very healthy (myself as an example.

This does not make these people bad people, just a lack of understanding and also to tell a person not to give up may be foisting their values on another person.

I will also say that cancer hits us all differently and even within our unfortunate circle, it can sometimes be hard to understand the values and focus of a cancer patient. Staging has a lot to do with, where cancer has spread and whether hormone or HER status as well. Different drugs, different side effects. The way the body metabolizes drugs as well.

I am missing out on a lot of points, but speaking for myself, I do my best NOT to judge other people. I try to make sure if I have judgments that are purely my own, I keep it to myself unless asked. Advice is given only when sought out.

DogMomRunner

ARC - Saying no is not giving up. My mother in law decided that she was done. Mets to her brain from lung cancer. I believe that our government/society should support people when they get to the point that they are tired, sick and tired of being sick and tired. Pain free and guilt free. I can only hope that when I need a place to go, I'll find it

runor

Marijen, I come from a long line of Italians who dealt in the trade of...you know...taking care of problems. So, if you have a problem, you make a call. Problem solved. I have a Luigi and Pietro on speed dial. Money in an envelope. Fuhgetaboutit!

Excellent post Jaycee. Excellent.