May 2021 Surgeries
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I peeked at my online chart and saw my Oncotype results. It is a 13. My appointment with my oncologist is tomorrow. I don't know if this is low enough to skip chemo or not.
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Historygeek - good luck tomorrow! With my first cancer onco came back at 16 and I still had a recurrence even though I had great margins and took my tamoxifen diligently for almost 5 years. The only difference between your tumor and my original one was that mine was 1.6 cm, but very high ER and PR. Make sure you ask about recurrence and don’t let them brush you off. I feel they tend to do that. Chemo is hard, much harder than I thought but this is your life - get the answers and make an intelligent decision. Sending you hugs and strength!
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I wish my onc ordered the Oncotype. My understanding is Mammaprint is either high or low? Or A or B? But not specific numerical scores. I’m super nervous. My tumor though tiny was grade 2.
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Monarch, they are both good tests but I understand what you are saying. Nothing making this journey easy - stupid cancer!
On the plus side, I have heard that chemo for our type of cancer (ER+ PR+ HER-) doesn't do much for grade 2 - it's more recommended for grade 3.
Whatever the decision make sure you take the hormone therapy afterwards!!! That is an 💯 given you must do it!
Sending you hugs and strength as you wait!
Almost forgot to add: also make sure you understand the risks with having Chek2 positive - I know nothing about it but it may change things.
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my Mammaprint results are in…but they won’t tell me till my appointment on Monday.
My onc insists chek2 doesn’t change my treatment plan. From the little research I’ve done he seems right. It did make me choose a bilateral masectomy though especially for such a small tumor. Plus I’ve had benign breast conditions that have needed watched, biopsied (core needle and excisional) and I was kinda over it!
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that is so trueMonarch especially with the weekend coming up. You should call your onco office and demand the results! (My two cents!!)
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I’m not sure I want to know. We’re supposed to go to a friends lake house this weekend. Tonight is my daughters highschool graduation. I don’t want bad results to cloud this weekend.
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hope you have a good weekend (sounds FUN!)!! You deserve this break! Congrats on your daughter’s graduation!!
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Monarch.., I kno you’ve been waiting and hoping for good result for you!
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Historygeek-- it depends on your age. there's goodinformation on this website about the scores. Mine was 19 (over age 50) and five (yes five) oncologists plus tumor board said absolutely no chemo. There was a huge study that just wrapped up in January that took place over 9 years and included hundreds of thousands of women so they are pretty confident with these numbers. Of course there will still be a small percentage that does recur.
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They are saying no chemo. I started Tamoxifen today. We'll check my hormone levels in a couple of years & decide whether to switch to an AI then. I'm only 42 so I may be on Tamoxifen for longer than 2 years. Fingers crossed for no serious side effects.
Now I'm counting down for the exchange surgery. I will not miss these expanders at all.
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Historygeek - congratulations!!! No Chemo!!!!
Tamoxifen really isn’t too bad - I was on it for 5 years and really no side effects. No weight gain either. Sending you positive vibes that you will be the same!!!
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Historygeek, that's great news! Good luck with the tamoxifen. I've only had hair issues with my AI, but that's tolerable.
Monarch - waiting is the hardest part in all of this.
Have a nice week everyone
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well I got the results. I need chemo. So I’ll start June 28th. It will be 4 rounds three weeks apart. I’ll lose my hair. No port. They will try my veins. I’ll still go camping next week and then start that Monday.
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I'm so sorry Monarch. Hopefully the 4 rounds will take care of it. Have fun camping! Hope it's not too hot where you are. I'm in NC so it's toasty here. 😂
I had my first post op expander fill today. We added 50ml to each. So I have a total of 300 ml in each now. It wasn't bad. I do have some internal itching under one of my incisions.
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I am sorry Monarch - sounds like you are on a similar path as I am. Go check out the June chemo thread - I added a nice long post about the first treatment.
BTW after I got over the first hard week - I feel like my normal self again. The docetaxe really made everything in my body hurt but we will have it under control for the next round!
Hugs!
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Aw Monarch! I was really hoping you would be spared. I start June 30th. You kno, at first I was really bummed but then I kinda am relieved I was not in the middle where you could choose or not. At least it was decided for us and we don’t have to live with making any wrong decisions.
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I know we’ve all moved onto our next steps, but I am more than 5 weeks post-op. Today I’ve had some soreness thru my bicep muscle then noticed some swelling in my forearm. Immediately I am thinking lymphedema, but doesn’t totally jive with the symptoms. I am going to get it checked out but of course it’s Friday evening and I have plans all weekend. Elevating and resting seemed to help.
I have been trying to still be cautious about carrying things and resting, but at same time trying to resume activity. I did have a echo car diagram yesterday to prep for chemo and my arm was positioned weird and I may have been leaning on it too. Hoping it’s just a reaction to that.
Anyway, hope everyone is well.
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update us about your arm when you can. I still have some soreness and tightness across my chest and I took have to remind myself to take it easy. It’s hard.
I can’t believe chemo starts in a week. I ordered some chemo caps and they came in the mail. It made it so real.
Hope everyone is doing well
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I am 5+ weeks out too, from my BMX and implants. I will admit that it has only been one week where I haven't experienced a lot of pain. I was going cuckoo with the constant, severe pain. Thankfully, the doctor prescribed additional opioids to help me get through. Phew! I honestly didn't think I was going to make it. This week has been a completely different world without the pain and without the pain making me think about breast cancer 24/7.
I have been weeding and gardening and even mowed the lawn a little! I am beginning to feel a little normal.
I had a few significant episodes of possible lymphedema where my cancer side arm was hot, painful and felt swollen but didn't look it. Thankfully, I have not had any more episodes recently and hope it was just due to surgery. I have developed cording in my arm and boy does that hurt. It is definitely limiting my range of motion. I can see the cord in my armpit but the BS said it runs down my arm to wrist. I can sure feel that. I have a referral to a specialized PT for this.
BtwnStrs, could your arm pain be cording too? Sending strength and hopes to you and Monarch that the chemo will be easy on you. You both sound very matter of fact about it.
Keep healing everyone. Happy weekend.
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Dulcea - glad you will be seeing PT for the cording. I am surprised you didn’t start seeing PT earlier? My cording is limited to my armpit and almost gone thanks to PT and some massaging techniques.
Monarch & BTWNSTARS - are you seeing PT? I am just starting chest opening exercises this week since I still feel some tightness around the incision.
Tip that might help - she has me massaging incision with vitamin e oil and some sweeping motions up to my collarbone and down to my rib cage to keep lymph fluid moving.
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I am really looking forward to PT as these puppies feel very tight, and I know I am not using my arms properly yet. The cording pain gets me when I least expect it because I forget not to reach. At my last two follow up appointments with the BS and PS, my complaints were the same but was not given a referral for PT until this week. I remember the BS telling me last time, "You will be fine". Maybe it was just a wait and see approach.
The PS has me massaging my foobs as one of them has settled too high. I will need some adjustment or whatever in the future on one of them but I'm not thinking about that right now.
Carlsoda - thanks for the massaging tips.
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Dulcea - glad you are getting some PT. Funny thing this is my 2nd surgery with same surgeon. First time I had cording really bad and I asked her about it and she knew nothing about - hadn’t even heard the term. By the time I had my mastectomy she had me set up with PT ahead of surgery and continuing afterward. Our doctors unfortunately don’t know everything and we expect them too. Glad I have one that continues to learn!
I still have a little cording left in my underarm but almost gone! You will be the same soon once they get working on it!
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Thank you all for your perspective. It seemed to have gotten better with rest. Even after some significant walking in the heat this weekend, I only had a small part in my forearm, it's almost circular/round that is a little more swollen then my other arm.
I had done the arms measurement with a Occupational therapist before surgery, I have my last follow-up with PS tomorrow so I am going to ask them then go from there. I may just contact the OT and make my own appointment to be assessed by them. I am just trying to figure out how to schedule this all in with chemo starting next week too. I get my port placed on Friday.
My other anxiety is waiting to talk to my work HR this afternoon to see if I will be able to continue to work from home during chemo. My boss and other administrators have expressed working with me thru it, but our HR tends to be sticklers for rules, so I am wondering what they will say. It's moreso because of covid precautions with immunocompromise situation. I'm also not sure like with my partner, if he goes out to work I guess he needs to wear a mask and be cautious he doesn't bring something home?! I guess I need to move all this stuff over to the chemo threads!
Dulcea/Carlsoda - it may be cording. When my BS felt my lump under lymph incision, she commented oh that's not too bad, small, which is mostly just fluid and will be absorbed. I feel a little bit thru my armpit and like it goes down my bicep. Yes, hopefully it is that and I can get that taken care of with therapy. I will let you know what i find out!
Monarch - yes, I ordered some headwraps too just to be prepared. I honestly don't know how to feel about that. BC survivors I've talked to really had issues with hair loss, I don't feel that attached to it to be honest, but who knows when I actually see it. Trying to figure out how to navigate what I will want to do with hair but mostly can't wait to figure out my side effects and how long I will be down after chemo treatment. I am planning on 2-3 days, I really hope it's not more than that!
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Hi BTWNSTARS - hope your meeting went well with HR and you can work from home. We are still allowed to work from home luckily although some people work in the office now. I am trying to stay away from people the first week or so when my wbc’s would be at their lowest. Hope that is long enough!
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Thanks Carlsoda - it did go well with HR and I just need to have my medical note on file for work-from-home. I may need to do an ADA request form come September to continue the accommodation. We'll see. Now I just have to hope I am actually ok to keep working thru all this!
I also wanted to update it is cording/axillary web syndrome in my arm. I met with PS and he went to look for anyone on my BS team and my Dr. actually came in and as soon as she saw my arm go up, she's like "oh yes, I see the cord." They have a regimen they prescribe 800 mg of ibuprofen 3 times a day. 1 hour after taking use warm compress/heat pad for 10 minutes on area, then massage for 5 minutes. I started last night and I am a little scared taking that much med, but it seems to already be helping even after 2 sessions, so hopefully it clears up sooner. She also advised taking pepcid or antacid to help counteract the stomach affect of ibuprofen. Hopefully this info helps someone else. I was a little weirded out having to touch it, but once it's warm it kind of helps loosen it a bit, so not too bad. Just breathe.
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Carlsoda - that is amazing that the surgeon didn't know what cording was just five years ago. Thankfully they have specialized physical therapists for it now. I guess it is really pretty common. What took them so long??
Thanks BtwnStrs - I can see the cording in my armpit too, and my BS said it was all the way down to my wrist but I can't see that. Crazy stuff! Are they going to send you to PT for it or do they think that the massaging and meds will get rid of it? I am still waiting for these PT people to call me to make appointments but I guess they are pretty busy since there are so few who do it.
Good luck on your chemo you two. I hope it goes will while you work.
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Dulcea - so far no talk of PT. Not sure how I would fit it in with chemo and all coming up. So I guess the regimen is working, when I heated it today it felt a little more sore but then when I went to massage I had trouble finding it. So I am thinking it is loosening up. I think I will prob look to do some PT when this is all over anyway just to help with range of motion. Hope you get your appt!
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No PT for me either but I think the tightness I was experiencing was from the fills. About a week after my fill I feel pretty normal. I’m still doing my stretches especially in the shower. Starting chemo Monday so right now I’m more focused on getting through that. After chemo I want to get back to exercising. I used to lift weights and do push-ups. And not sure how I will get back to that. Especially with an exchange surgery coming up
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Well. I finally got my PT all set up for the cording with an initial consultation and six sessions afterwards if needed. They start August 2nd. Yup.
I guess I'll just hit youtube for the time being and continue with my little stretches, and maybe they'll be all gone by the time my consult rolls around. My arm is only slightly limited at this point, but the cording is still clearly there and so is the shock of pain if I move my arm just right.
I think the kayaking I'll be doing the week before PT starts should clear everything up! Don't worry. It's casual lake kayaking, not white water kayaking.
Otherwise, I am finally feeling myself. It took a long time but I feel like I'm close to100% of the wonder woman I was before this all started.
I hope every is doing well with their treatments and healing.
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