De Novo Stage IV
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BSandra, I'm so glad she's doing so well. You are a huge advocate for her, and I'm sure she appreciates you immensely. I'm not sure if you'd ever be interested, or maybe you already know, but there is also a caregiver Zoom meetup that happens. There are women here whose husbands attend and find it very helpful to be able to talk about things. I get so much out of being with others who know our journey.
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Hi all! In other news, I am having a colonoscopy tomorrow (whoohoo). It is a mixed blessing because my MO said they don’t usually push MBC patients to have this test done but since I have been NED for almost two years, and I just turned 50 last year, I am going forward! As I told my MO, I don’t want something else to become a problem. Plus I do have Lobular cancer which I KNOW can appear in the stomach and gut (shoutout to KBL and others who shared their stories here).
So today is all liquids and jello (no blue, purple or red color). Then on to the medicated drink this afternoon (good times). Procedure is tomorrow morning.
Heathe
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Oh, dear KBL, thank you for these beautiful words. I did not know about that group/meet-up... You know, my country is too small and we have groups for people with diagnosis but not for care-givers. And people here are pretty reserved-harsh-northern people so they are not very much about sharing their grieves:/ Yes, absolutely, these groups (like this one too) are amazing and super-important. Could you PM me the link or the contact of administrator of that group? Thank you so much,
Saulius
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The conversation about surgery vs no surgery is interesting to me..I haven't had surgery but my MO is of the aggressive approach which I so much appreciate..and I know we have discussed the maybe's down the road. He says every step has to go as planned to consider it seriously, but I am torn and would really need to educate myself much more..I understand there may be no benefit to me specially in my case, but am thankful for those that go through with it, as well as those that don't for the future studies and tests. Reading everyone's thoughts and posts just makes me realize I have so very much to learn. I usually immerse myself into whatever it is Im learning, and research..except I have changed course with this diagnosis. I know what I feel is enough for now and am ok to learn as I go. If radiation goes well I will go back on Kisqali for some time and have another scan..MO says if scan is good we can discuss surgery. Im open to all things. Mentally I definitely understand the need to get rid of what you can.
Tinkerbell, if you happen to check in, my thoughts are with you and your dad.
Saulius, I love that you are here on behalf of your wife!!
Dancemom, I hope you get those drains out soon..Im not gonna lie, Im scared of any surgery and I am not a good patient. Im a barfer after I wake up each and every time, even when they tell me they are going to give me something to not make that happen. Im glad you are over that hump and healing now.
Hjernt, your post made me laugh. Good luck on your colonoscopy.
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BSandra, I'm so glad you'd like to join the caregiver group. Here is the link to register. I hope you find it as helpful as we all do when we share our stories. I really hope it's at a time that is convenient for you.
https://breastcancer-org.zoom.us/meeting/register/tZwvd-urqDkvGd0ngblzYrJDbqMjNQPf1n-5
hjernt, oh, the joy of prep. I cannot take the magnesium stuff or whatever that god awful stuff is I puke it up every time I take an 8 ounce container of Miralax in a 64-ounce Gatorade much more tolerable. Good luck. Let us know how it goes.0 -
um, while at my POST OP, Surgeon casually says "it looks like you were due for your mammogram in Dec, I'll put that order in." I feel like all I did since march was ctscans, bone scans, biopsies inuding one in the remaining boob, mris, consultations, blood draws. Wouldn't they see stuff in all those other scans? Anyway, I called and first available mammo+sono was END OF APRIL. Explained situation, including that since it's just one boob, maybe it'll take less time, lol. A few calls back and forth and they got me in mid Feb. Surgeon also said make an appointment now to see her in 6 months. That is the ONLY thing I know I am supposed to be doing in the future after my appoints next week.
I asked my GP a couple of months ago about when do I do all my other regular medical stuff,. I need my eyes checked, my gastro stuff, my skin cancer screening, some old dancer joint stuff, some immunizations..and he said let's get this taken care of first. But it is never ending. . I saw FIVE doctors in Dec, multiple times each in some cases! MO,RO, SO, Plastic, anesthesia (i have some issues with that).and GP for surgical fitness. Is it just the first year like this? Or should I plan on multiple dr appointments each month from now on?
I guess I'm surprised that #1 Ineed the mammogram already especially with all the imaging I've done, and #2 nobody told me or noticed before now.
Edit to add: between original suspicious mammo last dec 30 and surgery almost exactly a year later, I've had over FIFTY medical appointments! Wow.
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Dancemom - this last summer (1 year out from dx), my PCM said I should make sure and get my annual mammogram. I asked my MO, and he did not think it was necessary, since I'm getting regular PET-CT scans (which are currently negative)...and I'm okay with that.
Re: appointments Since I reached NED, we were spreading my appointments further apart. My schedule before I moved was bloodwork every 6 weeks, MO consult every 3 months, scan at 6 months. I could have gone longer between labs, but my TMs seem to be sensitive, so that's my security blanket. It will be interesting to see what my new MO thinks about a longer schedule when I finally get to see one again. I have an appt with my new PCM (for a referral) later this month, so that's a work in progress.
Saulius- as always, I appreciate your input. Im glad all is well with you.
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DanceMom, that’s a lot. I haven’t counted how many appointments I’ve had. I don’t think it’s been 50. I no longer get mammograms, even though I still have my breasts. I wouldn’t do anything if they finally did see the cancer there, which they haven’t. One less test I have to do.
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hjernt - I do not envy you!. Originally, I was told that stage 4 precluded me from having a colonoscopy, but 3 years ago when I was mbc for 10 years, I went through it. As KBL says, the prep is the worst. I won't even go into what happened the day and night before mine. Good luck to you.
Dancemom - After my stage 4 diagnosis over 13 years ago, I started saving my appointment calendars from each year. In each, there is almost no space, except for Saturdays and Sundays, where there is nothing written. Not all of the appts. are cancer related. Because of my age and other threatening conditions, I have been seeing a lot of specialists for a long time. It's good that you maintain your upbeat attitude.
I have always maintained that the cancer won't kill me, the side effects will.
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the beginning of diagnosis and treatment did seem like a whirlwind of appointments for me and endless imaging...I was rolling my eyes at all the scans , MRIs, I couldn't wait to start chemo and start attacking that lump.
It does get better but it is still more doctor visits in five yearsthan I ever made in total during my first 59 years of life. My treatment regimen requires visits every three weeks. Scanning every six months now. And an echocardiogram every six months too
And I hope they stop finding things to comment about on my pet scans....just got my thyroid biopsied due to comments from the radiologist who viewed my scans last year. The endocrinologist also referred me for my first DEXA SCAN which I did want, but was worried if it showed osteoporosis or osteopenia I would have to go back on XGEVA before my dentalimplants are done. I don't want to go back on it at all actually, as long as things are as they are right now.
Lots of tests but all normal results so far. Knock wood.
Another comment on my scan report was “inflamed esophagus “ so now I need an endoscopy and speaking of the colonoscopy I was supposed to have that in the summer but I cancelled and didn't reschedule. Now it's my esophagus that's the problem.
I'll probably go to my primary care and try to get a cologuard test first hopefully it will eliminate the need for the colonoscopy
Saulius, welcome to the thread, I always appreciate your contributions to the conversation
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Olma61, I’m sorry you’re having trouble with your esophagus. I had an endoscopy and colonoscopy at the same time. Maybe you could do that so it’s only one visit.
I’ve never thought of counting how many times I have been to the doctor in a given year. Now I’m curious.
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olma- I was diagnosed w Eosinophilic esophagitis (EoE) a couple years ago. I found out I have a ton of food allergies, so radical diet changes have kept the food impactions in check. I am WAY overdue on my endoscopy, thanks Covid and cancer.
Omontro, its crazy! Last year felt like one test led to another. I decided to check it all to see of I was exaggerating, nope: 23 dr appts about cancer: PCP x3 (plus many calls as I have a gated insurance plan), genetic x2, obgyn x2, plastic x3, surgeon x3, anesthesia pre-op x1, MO x9. PLUS 14 blood draws, 6 xgeva injections, 4 CT scans, 2 bone scans, 4 MRIs, 1 bone density, (various nuclear injection in there somewhere) 1 MRI Guided biopsy, 2 regular biopsies &Fina, 1 vaginal ultrasound (for Ibrance), and the original mammo+ callback+sono. 3 social work, 1 preop Healing workshop, 2 visiting nurse, 3 pre-procedure covid tests at hospital. Regular: 3 dentist (had some work the week before I started the ibrance, and another cleaning), 3 more PCP regarding bloods TB and papers for work, and the only annual exam I got in there was my skin cancer screening. (Not even my annual physical!) Got vaxxed boosted and flu shot in there too somewhere.
I have upcoming OT so I can go back to work once drains are out. I think I am looking forward to 6 weeks radiation if interdisciplinary conference still thinks thats the best idea, then I guess it should slow down for a bit. Xgeva and scans every 6 months. But I think MO and bloods still monthly after radiation???
Whew, It is a lot. I know I am not the only one! I guess cancer is really a part time job.
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Dancemom - and that's just the actual appointments... there's also the struggle (sometimes) scheduling the appt (add COVID issues to the normal problems), then there's the bills, bloodwork results, scan results, dealing with insurance for docs, referrals, scans, and scrips. It really feels endless some days.
Olma- sorry you're having to deal with yet another concern. I hope your PCM let's you use Cologuard and you can avoid the nasty prep. I've had two and I doubt very seriously whether I would ever have another one.
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thanks all
they’ve also talked about my “lobular uterus” and fibroids before, glad I haven’t been referred for a hysterectomy lo0 -
I worry that I wasted a whole year already. Covid robbed more time. How do you figure out what you need and want to do?
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Dancemom- I asked myself that very question today! I’m trying to make a list with the answers, but honestly, sometimes I just want to veg in front of the TV.would love to take a trip overseas but Covid ruined that.
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Kikomoon, yes starting at a screen is about my energy level now. I know I want to fly across country to visit my parents and sisters which I didn't do in 2019 for stupid reasons, not in 2020 for covid, not in 2021 for cancer... also my 87 year old mother-in-law and that whole side in another country. And my brother and his family (I haven't met his kids yet!) in yet another -that March 2020 trip was canceled suddenly.
I worry for my kids. Covid has stolen everything. They have followed every Precaution and done nothing fun for 2 years now. And then a classmate or neighbor goes off and has fun and the spread is exponential. We are all sick of being responsible and being punished for it. I want them to try to take some calculated risk to live a little, but they are afraid for me. 20 keeps crying that she has never been able to just do random things for fun. She has to always keep track of who her roommate went to dinner with and which class is full of party boys, and if her labs get canceled how can she graduate. She came home Christmas eve to quarentine and help me with surgery. She has been a fantastic nurse and cook and babysitter. She hasn't socialized in person since she arrived. I'm kicking her out tomorrow. 23 is a work from home hermit. 11 hasn't had an indoor playdate in 2 years. At least he goes to school this year. But he goes to school stressed about who was out yesterday, then he comes home and stresses about who will be out tomorrow. He reads the daily email listing the cases per grade at his school. DH is trying to hold it all together.
I know this isn't the covid thread, but I can't seperate my cancer from the pandemic.
BUT- when this damn drain is out and I can go back to my students, I'll feel better.
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Dancemom
Welcome to the No-Fun Club. About three years ago I decided that I did not feel well enough to travel, even to NYC. When COVID came along, I became a hermit. I traveled only to medical appointments several times a week, and sometimes for fresh groceries. Because so many online activities and medical appointments were postponed until after the "holidays", I felt despondent.
As you mentioned, my kids are more afraid than I am about infecting me with COVID. Even though they live close by I still don't get to see them and the grandkids as often as I'd like. I even wear a mask when I see them.
I used to love travelling, but now I have resigned myself to reading and honing my cooking skills when I have a spurt of energy.
When they find a cure, let's all go together to an island, or Europe. Yeah, right.
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My approach may be unpopular around here but I am Stage IV with all normal lymphocyte, monocyte and neutrophil levels. Not on any drug that compromises my immune system. Thus, with the permission of my doctor and my state government, I have flown to visit my family and have attended family events.
I figure if it's safe for me to sit in the cancer center for hours around other sick people, to have oral surgery, and to be scheduled to have a probe put into my rectum and down my throat, then it is safe to sit on a plane for three hours with other masked people, traveling to a destination that requires vaccination cards and/or negative COVID tests upon arrival.
I don't attend concerts or even go to the gym anymore, but being with people I love is a priority for me.
I am facing the fact that my time is limited and choosing not to spend it in total isolation. Your mileage may vary and this is not advice. I'm only sharing my own choices and experiences.
PS I pay for first class seats so I can sit by myself and get through the security line faster
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Olma- I think to each his own. Everyone has to do what is comfortable for them. I am one that must isolate. My white counts are low and have been low the last 4 years of cancer treatment. First with Ibrance, and now with Lynparza. I have been fearful of Covid since it began. I called a friend yesterday to wish her a Happy Birthday. I got her voicemail. She later called me back and she was telling how her friends (3 other ladies) took her out to eat at Olive Garden (an hour away). She said she had a good birthday. I wish I could do that. I spent my birthday (in October) alone in my house. But.... even if friends would have corralled me and took me out, I would have been too leery of the Covid germs to have any fun. Being in a closed-in car with the other ladies (no masks), then in the restaurant (where you cannot wear masks while eating your delicious meal), and who knows what else they did on the drive to and from, maybe stopping off to shop or do something else spur of the moment.
Yes, my time is limited too, and do not want to spend it in total isolation. But, I have fought this cancer the last 4 years and would hate to end up dying from stupid Covid. Maybe I am wrong thinking this way, but I just cannot see myself letting down my defenses to do things. If I would go out with friends, I cannot relax enough to have fun. Until Covid is more under control and if I got it it would not be a death sentence for me.
As Dancemom said, I cannot separate the pandemic and the cancer. If we did not have Covid anymore I would do more things and live my life more the way I want to.
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Hello friends!
Back from the exciting adventure that is a colonoscopy (not!). All in all, not terrible. As several mentioned, the prep was the worst part. Took me off guard but then I just went with the flow (HA!).
Thank goodness they knock you out during. Honestly the time it took to get all my medications listed was the longest part (ugh). It just sux to have to rehash for every nurse that I am in treatment for breast cancer. I did get a waver from taking a pregnancy test because HELLO, no ovaries or tubes.
No trouble coming out of the anesthesia and pretty much laid around the rest of the day. Had scrambled eggs and Mac n cheese right after (not at the same time, lol).
Today I am still pretty gassy and my gut is complaining but still was able to exercise and eat my usual stuff. Right of passage complete!
They found three very small polyps which the doc was not concerned about. They will be sent off to the lab for testing which I will get a lovely bill for later ( yay beginning of the year deductible).
To chime in on the travel, I went on a short trip about an hour out last July. I was vaxxed and things were opening up. It was nice to get out of the house and be somewhere else for a couple of days. This year I have a Sabbatical from my company of 4 weeks that I will use to travel to CA, driving up the PCH and into Oregon. I will be going up by train (bucket list) and meeting hubby who will fly in Anaheim. From there I am planning out a three week trip. We were going to go last year but the virus made it impossible so here we are. I am fortunate that I do not have issues with low blood counts and am not immune compromised. We are vaxxed, boosted and are vigilant about masking.
I am hopeful the virus will be moremanageable by the time we go in June. Planning the trip is part of the fun, for sure.
Heather
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about the medications, I made a Word document that I print out and bring to any non-cancer appointments. It helps, a little.
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hjrnt congrats on getting it done. Glad they saved you time on that pregnancy test🤣 Yes, my new insurance year started with the mastectomy. I am hoping I can have the reconstruction in the same insurance year!
About travel, depending on what happens and when with my treatments, I'm thinking about taking 11 out of school to see grandparents in CA. My anc never went above .9 on Ibrance it so I definitely need to be careful, but I need to go. Then I will send DH to see his mom. International travel is so much more complicated for me, but at least he can see her. We can't keep waiting. I just need to find out which week I don't need to go to a dr lol!!!!!
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hjernt, yay, it's over. Whew. Such a pain in the a**, literally. I hope results are quick and negative. That's all we hope for. I hope your plans go nice and smooth
olma61, very smart idea.
DanceMom, I'm glad you're making plans. I'm sorry you won't get to go with your husband.
I am just back from five days and five nights with my almost 2.5-year-old grandson to our vacation property. It's on ten acres, and he just loves being outside. We. had so much fun. He is almost perfect. He never mentions Mom and Dad when he's with us, slept like a champ, and cried maybe once in five days. He hates having his hair washed. I couldn't have asked for a more precious grandchild. If he says something and I get it wrong, he just says No to let me know that's not what he said, and I say something else, and he says, Mmm-hmmm, meaning I got it right. I am thankful. We also had perfect weather.
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Olma and Candy - I agree with both of you. Olma, just risking going to the hospital and sitting in doctors' offices, I'd like to be brave enough to travel. Candy, like you I don't want to jeopardize my 13+ years.
hjernt - they also found benign polyps on me. I am already wondering if I want to put myself through the prep again, especially if my insurance won't pay for a hospital prep.
What could happen? I'll get cancer, have surgery, radiation, chemo?!! LOL
KBL - He's cute as a button. I am happy for you!
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amontro - I felt like you do about the colonoscopy when doctors were pushing it as a routine screening when I was first diagnosed. Like what's the worst that could happen and I'm already getting chemo and having PET scans, wouldnt colon cancer show up on my scans?
But my current gastroenterology adventure is due to my hemoglobin going below 11 (it's never over 12, due to a genetic condition I have) and my oncologist testing my iron levels, which are also low-ish. Apparently when you don't menstruate anymore, the next common cause for low iron is gastric bleeding. I was referred to a gastro doc and he wanted to do the colonoscopy. Never did it and then on my next pet scan, the radiologist commented about my esophagus looking inflamed, so now the plan is endoscopy. They put me on iron supplements months ago and my iron levels are now normal. I was taking krill oil at the time of my scan and it was making belch a lot and is known as a possible cause of gastric inflammation and irritation. So I'm not worried and not in a hurry for all these tests, but the oncologist is. (Hope they don't read this forum and identify me, I better be nice, lol)
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Dear KBL, wow, such a beautiful experience with your grandson. My son also does not like his hair being washed:) I always sincerely laugh when he starts sobbing (am I a terrible dad?) 5 minutes before going to shower if we tell him that today is THE DAY (hair washing) and he needs a few BIG hugs before he gets into shower. Funny how happy and smiling he becomes 2 seconds after the last drop of shampoo is washed:)
I promise not to hijack the thread and not to write very often but I carefully document every pill, drug, visit, blood count, anything (sort of like a diary in Ms Excel, graphs that helped me to even find some correlations) since it "all" started and in past 4.5 years we: have been in hospital (NCI) 364 times, drew blood 83 times, had 387 drug with "needle" infusions (including neupogen), had 31 MRI/CT/PETs, 32 ultrasounds, 4 biopsies, I wrote ~40 letters to our/world-known oncologists/pharma-companies/officials asking/thanking for advice... I think this pictures very well what this disease is, and how difficult it is to deal with it... crazy.
Now we'll have an ultrasound in two days (19th, Wednesday), to check on what's going on with everything and what cyberknife did. Ehm, I am so nervous... like some sort of ptsd - every time I almost shiver... dang...
Saulius
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Saulius, please feel free to post here any time.
Aw, it's nice to know others who hate hair washing. We never want to see them cry. My daughter did have him in swim lessons in 2020, and he cried every time.
My goodness, I never thought of documenting anything like you have. It is crazy to think how many times we've been poked and prodded.
Please let us know what the ultrasound results are. I hope the cyberknife worked.
And no, you are not a terrible dad for laughing.
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Olma -
You hit the nail on the head, so to speak. I had my infusion on Thursday and didn't see my onc, but I got a call Friday from a cancer nurse that I needed to take iron and to see my GI.
This also happened about 2 years ago and my onc said it might be stomach bleeding, but GI was perplexed as to why I needed to tell him. I believe he spoke with my onc.
I will be seeing my onc in 2 weeks, my GI next month, and my GP in March. I'm sure they will all tell me opposite things.
Do any of you all get opposing opinions? For years, my onc has always said to take more B12 and D3. My GP has been telling me that I aesm taking too much B12 and D3. I always get blood tests from both of them when I see them.
For the record, I used to be very anemic when I was menstruating and had to have prescription iron pills which made me very constipated. Chronic constipation is what sent me to a GI in the first place, before my MBC diagnosis.
Happy to say that GP prescribed Linzess in the greater strength and that helps a lot. Sometimes I still need Miralax and stool softeners.
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Amontro, my onc has never even mentioned Linzess. Every scan I have constipation, no matter how much I go before. It’s frustrating because then they can’t see everything. I hope you get some answers.
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