Lumpectomy Lounge....let's talk!
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Hi everybody - gosh, I've been away for several days and am pages and pages behind, but I've tried to skim the posts to get caught up. Leslie, I'm glad you're getting in to see your MO so quickly - ask who you can contact if you have questions after your appointment in case you forget to ask something. I was given the names and contact #s for my MO and RO onc nurses if I ever had a question between appointments and they'd always be so good to phone back with answers for me, plus my Nurse Navigator was always an email away. Just an aside, I didn't need to wait for any government approval for my Oncotype test - the LVI was a bit of a sticking point for my MO and me, so she just ordered it and I received my results in one week (my MO had told me it would take two - I'm glad I didn't have to wait long for the results).
Wishing everyone well.
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Poodles, so exciting that you like your prosthesis! Being comfortable with how you look is so important. And watch that bending over... lol!
Saw the RO this morning and really like him. He took lots of time going over everything and was fairly personable. I'll start with the CT scan Tuesday morning and then get my schedule to start then, Nov 7 at the latest. I'll have 28 regular treatments and then 8-9 boosts to the tumor area. 😬 more than what I'd originally thought, but at least I'll finish up between Christmas and New Years. Long friggin time! I believe I'll also start on AIs on the 7th.
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Dara, at least you have a schedule now. That's good. Glad you like your RO. And you can start the New Year with lots fewer appointments
HUGS!
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Elizabeth/Leslie I am in Ontario as well and I will continue to see my BS every six months. He will be in charge of making sure I get my mammogram as well as checking me out physicallly. I just saw him and had my mammogram and will see him again in April. I also still see my MO every 3 months because I am on hercepton and he has my heart checked andfollow ups. Once Hercepton is done I will still see him just not as often.
Grazy I have never heard of this portal that you have access to. I was only told if I needed anything I could get copies from my MOs office in the hospital. Was given all the contact numbers and told to go to my local hospital if there was any issues. Interesting to find out more about it and if we all should have access
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So it looks like us Canucks are in the same boat as everyone else, every doctor says something different.
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Dara, Glad you like your RO and have your plan. They printed off a calendar for me with my appointments on it. I put it on the fridge and marked each day off as soon as I got home from Rad's. I remember being so excited when I was half way. Keep up the positive attitude.
Michelle, YAY for almost finishing Rad's & so glad your skin held up. Such a cute dog
Poodles, glad the prothesis is working out for you.
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Ok, got the curve ball today. I'm ER+, PR+ and HER2+. Figured out why we didn't have this info... The path from my surgery will be in on Friday, so that wasn't "ready" yet. The MO was taking forever to come in to talk to me today trying to find the info from my biopsy and she couldn't find it...finally figured it out when we talked...
I had surgery at Southlake. Southlake sends their path stuff to Sunnybrook.
I had the biopsy at Humber. Humber sends their path to Mount Sinai.
She was calling sunnybrook, and did get a verbal from them in the end from my surgery path so she knew finally, but couldn't find my biopsy stuff...I'm not sure what happened, but it sounds like Mount Sinai originally sent the final path to some other hospital that had no business getting my stuff?? I dunno. My GP didn't even get the final stuff as of last week. Gah.
Anyway, I have the report from my biopsy. It mentions the IHC test and the FISH. I put the IHC on my profile, don't know if I should have put the FISH. I'll see what the surgery one says when I get it on Friday.
So now I'm spending the day at the hospital tomorrow (Thursday). Will see the RO, then talk to a million people, and go get a port. I will start Chemo next Wednesday, and I will officially be off work for up to a year. (!!!!) 2 different chemos that I'm too tired to look up right now, then radiation, CAT scan, and they are putting a rush on me getting the gene testing done all of a sudden. Basically I'm in for a fight now. My simple stuff got really complicated today.
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Leslie, so sorry you have to go through all this. Sending positive thoughts & a big hug!
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Elizabeth, no country is exempt from BC confusion.
Leslie, oh no. You must feel blind-sided! Were you told you'd be off work for a year or did you assume that? Some ladies are able to work some, others not able to. I think that once you are on Herceptin you are less likely to have problems (but I'm not positive). I wouldn't plan either way on work. Just wait to see how you feel. You may be able to work some (if you want). Others who have had chemo will be better able to advise you. But geez, what a mess on your path report. I'd have been royally PO'd. At least you know what's to come. We're with you as you go through this. Keep in mind why you will be doing chemo: To KILL CANCER!! That may help.
HUGS!!!
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Leslie , I am sorry about the tripple positive diagnosis . Just keep in mind while you are reeling from it all that Herceptin and perjeta are miracle drugs . Targeted therapy is a blessing . I know a year of chemo is not what you hoped for or expected so my prayers for you is for you to tolerate it with no major SE's .
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Oh, Leslie, I am so sorry to hear about your HER2 status. That just sucks. I don't know what I would do if I had to be off work for a year. Beside the economic impact, I think the boredom would drive me crazy. Time to find some hobbies!
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Leslie, are there many HER2 positives up in Canada? I have seen several from the gals on different threads that are from Ontario. I know whatever we have ahead of us, we can do. As Peggy says, "it is doable." Some of the gals in my rads waiting room have been Her2 positive and are doing fine. You are also hormone positive which means that you should be eligible to take an estrogen modulator (tamoxifen, ai's etc.) If you get rads, I have a lot of ideas on how to stay healthy!!
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Thanks all. I'll try to post more tomorrow with more specifics. Peggy the MO said off for a year. Going to bed. I'm on overload.
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Leslie, try to sleep. Listen to your MO. Take care.
HUGS and more HUGS!
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((( Leslie ))). So sorry you'll have to get the full pharmacological Monty. But as others here have said, it's doable. Being able to take that time off to avoid pushing yourself to overdo will be a huge advantage.
Michelle, wild salmon is one of the healthiest things we can eat. Isn't it amazing that sometimes what's good for us turns out to be delicious, too?
Not gonna check in here too often--conference begins early tomorrow morning and I have volunteer duties as well as singing to do. Typing on an iPad Mini, because I wanted to travel light. Took almost 7 hrs to get to Iowa City (normally a 4-hr drive), and I'm pretty wiped out. At least I caught the last inning in the hotel bar so I could toast the Cubs while I had a salad and champagne (then blew it with the free bag of microwave popcorn that came with the room). Gotta be outta here at 8 am to sing for the seniors. Night
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Sorry Leslie, nothing worse than a curveball - you've got loads of support on this thread and you'll find your people on chemo and rads boards too. You've got this ((Hug)) Hope you got some sleep last night!
Elizabeth, you've got that right - there's no one way of doing things here in Canada or elsewhere! How are you feeling these days? Let me know when you're ready for coffee! We've got our Tim's gift card courtesy of Peggy ready for use
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Leslie,
Hi. I am triple positive too! That used to be a bad thing but with Herceptin and hormonal treatments our prognosis is very good! I also worked during my entire treatment(32-35hrs per week) and I know several other ladies(school teachers, store clerks, etc) that have done the same. Of course every womans body deals differently with chemo and you should listen to your own body and the advice of your doctor. I had my infusions on Wednesdays and always took the day off during chemo treatments, just because it took so long to get the medicine, but I was able to attend church the night of treatment. The weekend immediately following treatment was when I would feel the worst so I always planned to take it easy on those days. All of the other weekends, I was able to go about an almost normal routine except that I did try to go to bed earlier in the evenings due to fatigue. Once chemo was over, the Hercepting treatments were much easier and I only missed about half a day of work on those days. I probably pushed myself a little too hard and should have taken a little more time off but I was glad to be able to keep an almost normal routine as it kept my mind busy. I also tried to remember that there were people out there with a lot worse circumstances than me and that helped me be thankful and stay positive. I say all this in hopes of encouraging you that there is life during chemo!
There is a thread called "Triple Positive Group" that you may want to check out for advice and support. One thing that I didn't do that I wish I would have is get out and take a short walk, even when I didn't feel my best. My doctor always said that it would make me feel better but I didn't believe him at the time. Since then I have found that I feel much better when I do some type of physical activity everyday. It seems to help with the aches and fatigue.
Stay positive, you've got this!
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Thanks jpr. I'll look for that thread tonight/tomorrow. Just waiting for my sister to come so we can go to hospital. I was/am a little shocked the doctor said off NOW for a year, but not worrying about that at the moment. I'm going to just go with it until I understand everything and see how I'm feeling. If I feel I can and want to go back, I will. I don't need to get to that point today. That's how I'm trying to look at it at the moment. Baby steps. One issue at a time.
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Just dropping in to say hi. I don't post often but I still read this thread from time to time. Good to see some of the "old faithfuls", Peggy, ChiSandy, Molly who were around when I started by BC "adventure". Welcome to the newbies....this thread IS a lifesaver. You guys will get through this. It's hard to believe in the beginning but things do get back to normal. Hang in there.
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Leslie, you are going about this in the right way. Take each day as it comes. Don't plan for things to be awful (or fantastic, for that matter). If you're feeling good, do what you can. If you're not, just rest. You CAN do this! No fun. Not what you bargained for. But that's what you do - slog through it.
Nash, So glad to hear from you! Nice that life is normal for you and you're doing well. Those gals just starting this unwanted journey need to know that things do settle into a new-normal routine. Of course, we still worry but it is in the background most of the time.
Sandy, that drive was certainly rotten. I assume you had bad weather. By now you've played for your seniors. Hope the rest of the gig goes smoothly!
HUGS!
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Leslie , good plan to take it as it comes . Do join the triple positive group when you feel better . Nash , nice to see you .
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Leslie, I echo everyone's sentiment, and certainly wish the news was different. Chemo is not fun, but they now have so many things to off set side effects, that it was definitely not as bad as I anticipated. There is also a thread for those doing chemo that is excellent and really helped me as I was going through it (I'm just 2 weeks post chemo.). I am part of the August Chemo thread, but there is usually one every month starting up. There are several triple positives on it as well, we even had a young woman who is pregnant and receiving chemo during the pregnancy. Her little baby girl is doing great and due very soon. Just take it one step at a time, and work with your team to figure out works best for you. Sending a big hug.
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Well, I'm in the middle. I got my Oncotype DX score today and it's a 23. Guess I'll be discussing this more with my MO on 11/2. For anyone whose Oncotype score is in the middle, do you recall other factors that helped you and our MO decide whether to go ahead and have chemo or forego that as a treatment option? Decision, decisions......
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I feel like a creepy stalker because I've been following this thread so long and haven't posted. Even though I post on other threads, I really relate to this one and the support you offer each other. Plus the diagnoses and treatments are so similar. Anyway, hi all! I know you but you don't know me. I'm Sharon from Cincinnati. I have two grown children (boys) and work full time at a desk job. You can figure out all my cancer stuff from my signature.
I'll jump right in on the middle Oncotype score. There were a couple of things with my decision: my case went before a local cancer board and the general consensus was to go forward with chemo and I was offered what is considered the mildest form of chemo. I'm 3/4 way through it. It's not easy but it's doable. I'm still working full time. I don't have any regrets so far but I'll let you know if my hair doesn't grow back.
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Bagsharon - Hi. I work a desk job too and went back to work Oct 17. Interesting to hear about the cancer board providing consensus on chemo and which route would benefit you the most. Glad to hear your 3/4 the way done and it hasn't been too bad. So, how often do you go for chemo treatments?
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Hi ILSunrise, I'm getting TC every three weeks, for four cycles.
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So, my Oncotype DX test also listed the following ER = 8.7 positive (+>=6.5), PR = 4.8 negative (-<5.5)and HER2 = 9.9 negative (-<10.7). It's a little confusing since my path report from my surgery and my previous biopsy lists my PR as positive.
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Hi Sunrise and Bagsharon, Welcome to one of the best threads here! As you can tell, my onco was only 20, low intermediate. I had decided no chemo until my MO requested permission to do the Prosigna test. City of Hope has been regularly using that test for those intermediate scores and have had good results. I came back "high risk" for recurrence so the team highly recommended chemo for me. I just finished 2 1/2 weeks ago with 4 rounds, every 3 weeks. I don't regret me decision at all! In fact, I'm thankful that the test was done as otherwise I would have chosen to skip it. All my genetic tests were negative, but I have had a lot of cancer and breast cancer in my family. I just don't want it to come back. Those intermediate scores are the hardest. Now I'm going into 38 rad tx beginning next week. It's all doable! (I say that but I didn't work, and there were a couple of days each round I didn't even get out of bed.)
Bagsharon, I laughed at the creepy stalker image! I did that on a couple of threads also. I now primarily come here and on the August chemo thread. Welcome, although I know we all wish we could meet due to some other factor!
I love this site because people stay on it long after their initial treatments. It's great to get back to normalcy, but I will continue to want to know how people are doing.
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ILsunrise, my Oncotype was also 23. My MO strongly recommended chemo for me because my tumor was 1.8cm and PR-, a more aggressive tumor with generally poorer outcome.
i had 4 rounds of TC and while it wasnt very fun, it wasnt the awful experience i thought it would be. They gave me plenty of anti-nausea drugs so I never threw up. My biggest complaint was severe fatigue, hair loss, and changes in food tastes and textures.
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This is me doing the happy dance! I've just been approved for DIEP recon in NOLA! Now my insurance info goes to the business office to see what Cigna will pay.
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