My Husband, My Life, My Love, My Family, My Cancer
Comments
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Hi Candy, please add me to pocket duty. My last CT scan in June shows that I have a compression fracture at T12 plus T10-11 are also involved. My MO immediately sent a referral to Intervention RO for a vertebroplasty (cement inserted between vertebrae), she said this is needed for QOL which is very true. I’m have the procedure done on Friday July 22. My back has been really sore, especially the muscles supporting it since the end of April. Being upright and standing is the hardest. Not due to cancer, it’s osteoporosis…I suspect my bones are weaker from the 21 weeks of doxorubicin.
Sending hugs to moth and BevJen, thinking of you. Also celebrating the stable wins that folks are seeing….gives me hope.
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Mel - colonoscopy? On top of all the other 💩 (ha-ha) that we have to go through. I’m way passed due for another one but or is that butt (another ha-ha, i just can’t help myself) I just don’t want to do it. My new internist keeps nagging me🙄. I’ll give in sooner or later
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Hi Pots. Good to hear from you. I added you to the list. Pocket duty for you with Peanut M&M's (if you are not allergic).
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Pots: I already said it to you but I'll post this for all to see. Cementing your spine just seems like a medical form of bondo. Hope it holds you together for years of less pain. My bone density from late June came back as osteoporosis. No surprise. Moderate risk of fracture. Considering my face plant I think I am doing okay. I think my really necessary GERD medications probably didn't help. Pocket duty for you. Dark chocolate, sea salt caramels?
Mel: the procedure isn't that bad it is the prep that is horrible.
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Do any of you think, "What's the point?" when it comes to getting a colonoscopy or a pap smear? I'm not trying to be funny; I'm just wondering. Do you still get mammos? I only have one breast, but my MO basically agreed when I asked her what would be the point of a mammo.
I still get my other tests and scans but haven't had the colonoscopy or pap for a while.
Carol
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I've been told a pap smear would not be a bad idea, would have to get it done at the walk in clinic if it was to be done, don't have a PCP. I was told I should not need anymore colonoscopies and I was glad of that. My personal attitude is different than most, if something else is going to take me out beyond the breast cancer, I will not keep fighting hard. I don't even want a second line of treatment if Herceptin fails as being alone 99 percent of the time, there is no appeal for me to want to deal with SE and such as many of you brave folk do. I would just want to go in comfort. My family already knows all this as well, we talked about it long ago.
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mara: I was told (can't recall when or by whom) they don't bother with PAP smears after a certain age. 65? 70? You'll be dead from something else before cervical cancer gets you? As for a colonoscopy. I would/maybe do it again but I can't face the thought of the prep again. I had the procedure a year ago. It takes 10 years apparently for a polyp to possibly develop into cancer and I am pretty sure I'll be gone by then. So - yeah - I'll pass when I think about it.
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Sunshine - my PCM recommended a mammogram, and my MO said it was not necessary due to my other regular scans. Paps are no longer required for me. The GE that ordered the liver biopsy that found the bc ordered a colonoscopy at that time - then said I should come back in 5 years. At that time, I thought me being here 5 years later was pretty questionable. I guess I'll see how my treatment is going in 2 1/2 years and decide then. I damn sure don't want to go through that prep again. Lol
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Not longafter my MBC diagnosis I received a reminder about my annual mammogram. After a maniacal laugh I thought nope, don't need that! I did check with my MO who agreed it was rather pointless given my situation. I have taken that approach with the Pap test (recently received that reminder) despite the fact that I just turned 60. I figure at this point it's all about symptom management and if anything crops up I'll be scanned. I had a FIT test when I was originally diagnosed to check for blood in my stools. Came back negative and nobody has ever suggested I be tested again
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Sunshine, yes, I agree on “what’s the point” for routine stuff, however, if I had symptoms, I’d do whatever test they advise. My MO said years ago that I’m scanned so frequently (every 3 months), that they’d find anything before a mammogram would. Also, my 1st mammo was done in 2015 and it was normal, I was diagnosed stage IV the following year, my particular situation goes against the early screening/early detection advise.
Arrived home, all happy to be back, especially the pups.
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My MO is not even pushing for colonoscopy for me and there is a history of colon cancer, Dad died of it in 1990. MO thinks that cancer was actually responsible for the breast cancer as they are apparently related. Definitely do not want to endure the prep ever again either. Procedure was fine, twilight juice and woke up just fine. I remember older DB did the colonoscopy without any twilight juice. I am also happy with the scans I get as well.
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I was DX'd a year after a just fine mammo. They figured the cancer was already there, lurking,for several years. It might have been picked up had ultrasound been the norm for very dense breast back then.
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I had dense breasts as well which was why I missed the thickened skin underneath the right breast. Had my doctor at the time not wanted to examine them, never would have found the cancer until far too late. Would have had mets all over the body, not just in the brain from the start.
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I know everyone is busy with their days or appt's or both. Was short on sleep as I ordered a burger meal ( delicious) but made the mistake of drinking the pepsi that came with it. Kept me up until 5 am. Going forward, no pop after early afternoon or at all.
Not doing a whole lot today, adjusting an MRI app't, have my MO app't this Wednesday. Will try to convince them three weeks off Herceptin should not mean a loading dose, be easier to keep the next app't instead. Eating tiny snacks about hourly of beans, rice, all the stuff and walking 1000 steps after. Keeping calorie count for each in the neighbourhood of 100 to no more than 200. Easy to do when I actually measure the stuff I add. Want to rev up metabolism and get at least 6000 steps a day. We will see how it goes.
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I was sent a letter as Im due my 3 yearly pap smear, however here they take all the cells but just look for HPV. I dont even qualify for a mammogram for another *checks calendar* FIVE years. I tossed the pap smear letter in the trash - the one I had done in this country was fairly barbaric and I don't want to go through that again for no reason. The nurse doesn't even do a quick breast check at the appt, like you would get at the gyno in the US. It would take less than 30 seconds to have a qualified professional really give them a pat down, and could easily help catch younger ladies who can access the pap screening program due to age but are way too young for the mammo service, but nope. Young women don't get breast cancer, dont you know.
It does bother me a lot when I see women on other sites proclaiming they are skipping their mammogram because of - pick an excuse. The usual like the radiation will give me cancer, they never find anything anyway, false positives, and the latest about latent DCIS just hanging out and so women are overtreated. Wish I had that sort of luxury back in my life.
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ya know people are idiots. I think we know our bodies. Me patient : I have a port. You can’t find a vein . Nurse: sure we can. No problem here. me patient : it’s been six pricks. Please access my port. ? Nurse: we don’t know how to do that on this floor.
seriously?? Really. Oh my word !!!!0 -
I, too, receive the yearly reminders for a mammogram and pap smear, and my MO said not to bother, we'll catch anything on the scans. The medical center where I get my care KEEPS sending reminders about the importance of getting a mammogram, and I finally had to contact my primary care MD (who I don't usually have much contact with) to ask her to put some kind of note in my chart to make the reminders stop. She did, but it has to be updated yearly. Ugh. The automated messages about how "mammograms can catch early breast cancer" irritate me since mine, one year prior to diagnosis, was clear. I mean, it probably wasn't, since I have lobular and it grows in funky ways, but the mammogram didn't catch it.
Thinking of BevJen and Moth, sending love to everyone.
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I kept getting letters to get a pap for a couple of years after my hysterectomy.
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I was dx'd by liver biopsy almost one year after a clear mammogram and two years after a clear 3D mammogram - I had to pay extra for 3D, so I did it every other year. The docs said the mets in my liver had been growing for years, based on size and number. Interestingly enough I had a clear abdominal MRI (for unrelated issues), including liver, five years before dx. So, I just say WTF, if it's going to happen, it's going to happen. (I'm not saying I don't support annual mammograms; I do, my story is just not the right testimonial.)
Sondra - did you say young women don't get breast exams at their yearly well woman visits? What are they thinking?
Mel - smh. Do you think they could maybe find someone who could access your port (heavy on the sarcasm)? You have the patience of a saint. I don't think I'd let someone stick me 6 times. Three is the absolute max, and no "digging" (it was 2 for my kids). At that point, they need to find someone else... But, then again, I can be a witch (or something that sounds like that, lol)
So, I guess I'm in a mood, lol. Tomorrow, I have a dentist appt in the morning (oh, yay). Then, in the afternoon, my new county said thank you for registering to vote by sending me a summons for Grand Jury duty, so I'm going to try to convince the judge that I am not suitable and should be excused. Between the number one side effect for Verzenio, the fatigue, and the occasional Swiss cheese memory, I just don't see it working. And, the forecast high for tomorrow is 112, so all I want to do is stay inside. Grumble, grumble.
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I am also one of the 'had a mammogram wasn't diagnosed' until I found a lump a year later. It took me ages to stop getting reminders for mammograms. I have tried to stop stool sample checks being sent out regularly {in UK] with little success . Who needs more time with medical stuff? Doing what's necessary is bad enough.
Grump over, I blame the weather,possibly 104 today and I am not used to it!
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I really feel for you allin Europe, I know you are not prepared for this heat. Every British show I watch has people wearing coats, like all the time. In Texas, our “cost weather” only lasts a few weeks.
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We hit (unofficially) 104F at some point here in the early afternoon. I was up at 6 this morning and opened up the back doors to get cooler air in and that only lasted a few hours - by 10 am it was already 90F. Our kitchen is in the high 90s and the living room is just under 90. Thankfully the bedrooms are a little cooler and sleeping has been moderately ok. I went for a short walk to the village to pick up a few things and it felt like Vegas - hot and dry oven feel. Air quality is pretty terrible too.
I do badly in the heat in general but Lynparza + heat = gastro fun. Heat is supposed to start breaking about 7 pm and itll be dropping 5 degrees an hour through the night to about 63, with a high of 80 (and storms!) tomorrow. Cats are self regulating at least - flopped over either inside by the fan or outside under some shade. I bet they will be out in the garden most of the night tonight and I put some of their favorite Japanese creamy treats in the fridge for later as a surprise.
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Seeq, be as grumpy as you need to be, I can be that way too, along with me being lazy at times or more into my surveys/games for a bit of money. I am more grumpy that the intercom where we can let people in is dead and NOTHING has been done about it, not sure how emergency people would get in if something happened to me or the old guy next door. If it is not fixed by the end of next week, will ask again when it will be done as it represents safety concerns for me. My DB is not always available to come while at work.
Been mulling over Christmas as well when it comes to going over for dinner. I honestly think I would prefer to stay home, too many people at the house talking amongst themselves and I don't enjoy it. Once Mom died, it lost its charm. I won't let them know until October or November, just leave me out of holidays. We are not even exchanging gifts so no need to see people outside of weekly visit/groceries.
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I was point blank told by an OBGYN that I didn't need a mammogram when I had my wellness check at 40. I even mentioned "cellulite" and she did an exam and it was still missed. I asked for the mammogram anyway and it was the mammogram tech that took that serious and did extra images. First and last mammogram ever. I think at 44 I'm still under the bar for a colonoscopy but at this point IDK. I get CT scans every 3-4 months.
Moth's post didn't make sense to me either. I think I read somewhere but can't find it now that her daughter is helping her to post. I haven't seen any updates. I am really happy to hear the good news on others being stable! Yay!
Worked the weekend and it just about broke me. I'm just not sure how much longer I can do this. I'm trying not to make too many decisions today other than do I want to sit in the recliner or lay on the couch.
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Well, now I think I know why the box outside is not working, I am wondering if they are putting a new thing in as they are giving us keyless locks, we have to enter a number. Not thrilled as I can see that becoming an issue for us but I will stay home as usual and see what this is all about. Suppose I should just be grateful no one is telling me to move out. Next I want to hear how rent is paid. I like information up front. Will ask next week about rent.
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Hi, everyone. Today I received the following private message from Moth, which she asked me to share:
“I can login a bit, I'm still quite unwell
Would you please people that if they have fb or ig I'm on ig as thisisjustastage and I like it sent to everyone. And I'm ok with people writing suspicion on group
Some family in my house next days will help me for tumblr to make it open to everyone to read
I have a couple 2 dangerous things but good to get more time & I'm still hoping to live longer
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Edit to grateful2balive's kind post, the IG is called itisjustastage for anyone trying to find it. Thank you grateful2balive.
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I'm sorry still unwilling- can someone send stupid ingredients. Need destroyed pout through out. Have horror peep & poop now and need wipe anti pain? Sorry. So much pain. Can't read mach. I'm 66 kg and take size 7 in fruits of lumin soft. Pls if you have time with alternative mail through out & cream [redacted by Mods] or to lay IG account. My family will shop. Sorry, thanks
Edited by Mods to remove personal contact information. If you'd like moth's email address, please PM the Mods.
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I have just emailed Moth to ask for details on what she needs. I understand from IG that she's recently undergone another round of chemo and is experiencing severe pain in her hip and is taking strong painkillers to help with the pain.
Moth, we're here for you...
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Thank you grateful2balive for giving us Moth's message. I do not have an IG account so I cannot see her IG posts. She said we could find her on FB--- what is her name? You can PM me if you do not want to share that here publicly. It is still hard to read her posts on here. Is that the pain med side effect? Or confusion due to elevated liver enzymes? I am sorry to see she is still struggling so.
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