January 2019 Surgery Support Group
Comments
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Thursday, February 7 -- hoping everybody is starting to feel the healing and the possibility of a return to normalcy on the horizon.
Thank you all for posting updates. Yes this whole process is strange and barbaric. We all deserve crowns of laurels and flowers.
Do not hesitate to send messages and photos to your surgeons and nurse navigators if anything is a concern.
May our bodies knit back together strong well and rid forever of cancer and any other problems.
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Good to hear from all and to see that everyone is on recovery path. Tomorrow will be 3 weeks since my surgery. Met with PS today. He said everything looks good and stage 2 will be scheduled in April. He suggested physical therapy that I will start next week. On and off I am having back pain which could be because body is still recovering. I am hoping that it's not the side effect of letrozole which I have started 2 months back. Tomorrow I am meeting MO for lupron shot, will ask her.
Wishing speedy healing for all of us.
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FlowersBaseball, first welcome to our January club, seems like you have been through this rodeo once before. Unfortunately I can't speak to many of the things you are experiencing. I had a SMX with TE. The TE is causing quite a bit of pain which my PS said is unfortunately is a normal experience. My pain was on the lower edge of the surgical area and also inside lower edge. I did find, and others have commented, that if you touch the area the pain goes away for a period of time. With regards to the nodes, I only had 2 taken and am not having an issues at this point. I do have swelling but I it's only been 11 days since my surgery. I really think you should find a dr to talk with if yours isn't responsive. Sorry you are going through this and hope it gets better.
Mamihen, congrats on your all-clear path report, I'm excited for you. Your surgery sounds very complicated, I hope you feel better soon.
BeingPositive, sounds like you are well on your way to feeling better, so happy for you.
Best wishes and hugs to all
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it’s been quiet and I think I’m happy about that. I’m hoping it means all are doing well and able to have a semi-normal life. Wish you all the best
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Good Evening Warriors!
I am doing great after surgery. Hubby and I went to dinner last night. My BS says my incisions are healing great. I have been taking it easy so that I heal properly.
I do have a partial pathology report. I have clean margins, my lymph node tested negative, and the small amount of skin the BS removed because of dimpling tested negative.
I am still waiting on the rest of the pathology report. I had felt my tumor grow before surgery and sure enough, it did. It was about a centimeter. So the results we are waiting on are on the tumor.
I don't know if I have to get more chemo yet. I see my MO on Thursday and we will probably discuss what she wants to do. This is the downside of having surgery delayed (mine was 9 weeks pfc). I hate being triple negative. If I have to get back in the chair, I will. I won't like it, but I will do it. At least I have a new pink coach pocketbook (thanks to mom) and a pink baseball cap. If I do need chemo, I am going to order pink face masks I found on Amazon and find pink heels and sneakers. Go big or go home, right?
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Exactly Notgivingup~ go big or go home! I love that
. Sending positive vibes for the rest of your pathology report to be good news! I had my lumpectomy 1/31 and am still in quite a bit of pain each day~ was hoping to feel better quicker but hopefully soon. My margins were clean but, unfortunately, I had one of two nodes come back positive. Waiting on results from oncotype test to see if will need chemotherapy in addition to radiation and hormone treatment. The waiting doesn’t get easier. 0 -
Notgivingup, congrats and hoping the remaining path report comes back with good news.
CSRoberts, I’m thinking about you and hope the oncotype test comes back with positive news. Waiting for results sucks, sending good vibes to you.
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CSRoberts, Sorry you're having pain, it will get better. I had my lumpectomy on Jan 8 and was thinking I'd be back in fighting form in about 2 weeks. It's been a month and still have restrictions for working out, minor discomfort with certain movements and am not yet back in a 'real bra'- sports bras only. I finally got my Oncotype result on Friday and all I know is it was a 7, which is low risk. I have an appointment with RO on Wed to go over the test in detail. BS thinks it's likely I can avoid radiation so I'm hopeful. Will still need to see MO since 95% ER+/PR+ but one step at a time. Wishing you a nice low score on your Oncotype as well.
Love, light and prayers to all the Jan surgery sisters, sounds like most are healing well. Extra hugs to those still dealing with additional treatment or figuring out that next step. We are stronger than this disease, especially together.
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Today I'm exactly 3 weeks out from surgery. I still have sime pain on one side, one spot, pressing and stabbing pain. Sometimes I think they must have left scissors inside! But I guess it's the edge of the tissue expander. The other side has the colourful hematoma still, but zero pain. Maybe the hematoma is making everything softer, so no stabbing on that side.
Otherwise I'm feeling a bit tired, but all in all quite good.
No expansion yet. I have check up with my BS next week, so we'll see what co. es next
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notgivingup,
as a fellow TNBC-er, I am hoping your path report is favorable. From what I investigated my MD said capecitabine (Xeloda) is the next thing they would give if they want to give something further, and it's an oral chemo. I have a friend who is taking it now, and her SEs are minimal/decent.
Hopefully you will avoid it! But I had wanted to know my next step if I needed a next step and evidently this is standard for TNBC.
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Thanks for the positive energy MACTAZ and yogamom2 ~ I don’t know what I would do if I didn’t know all you strong ladies (& men!) were out there fighting through it, too! That’s awesome about your low oncotype score yogamom2! Fingers crossed that everyone gets good news and gets healthy ❤️
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yogamom2, I’m happy that you onco test is low, hopefully you won’t need rads.
Jaboo, You are right, such a difference in approach by PS. I go for my 2nd expansion on Wed, I think total saline that I will have after that expansion is 250 cc’s. I think the total amount that will be added is somewhere around 500 so I would have 3 more weeks after this week. After we reach the size, my PS said surgery would be scheduled about 2 -3 weeks after that to allow for healing. I also have that same stabbing pain. It comes and goes and I haven’t been able to identify any specific cause for it....so I’m hoping this expansion goes fast so I can get the implant done.
I’m dancing right now, I goy the last drain removed today. YEAH!!!!!
Hugs to all, stay strong.0 -
Time for a nice hot shower!
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Notgivingup, congrats on clear margin. Hope tumor path report comes back with good news too.
Csroberts, sorry about the pain. Hope it is getting better each day. Best wishes to you too for onco result.
Yogamom, yay for low onco. Good luck for next steps that MO will suggest.
Jaboo, hoping that you will get relief soon from the stabbing pain.
Santabarbarian, im er/pr+, but in my last week's meeting, my MO suggested 6 months of chemo pills for me too as preventive measure on top of Os+ AI that im already on. She will confirm this route by my next month appt as she wants to check some extra points on top of current path report. Im mentally not ready yet to give another 6 months of life, but i also want to do all that i can to avoid this in future. What kind of SEs your friend is facing? Real experiences help a lot than google search.
Mactaz, congrats on getting all drains removed. Such a relief it is!
Speedy healing to all.
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Being Positive: She had one nasty flare up of some severe sensitivity in her feet that seems to have been addressed w a dosage change. And she has had some diarrhea. But she feels good overall and is active and living normally. I think there is a Xeloda thread... you could get a bunch of feedback there.
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Thank you Santabarbarian! That is helpful. Will follow Xeloda thread.
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Just spent 2 hours with RO and it seems she's not as comfortable w/ no rads as BS was. Since that's her specialty shouldn't be surprised. She uses the Sloan Kettering breast cancer nomogram to assess risk and my risk number was 13 (13% chance of recurrence over 10 yrs), the golden number with that is under 10. My BS was sure she'd be comfortable with Oncotype DX of 7, which is really low. Can't find any comparison on which score may be most reliable, has anyone here had a similar experience?
I'll give my BS a call and see if she sticks with her original suggestion. It's still 87% likely they'll be no recurrence, 93% if you go with Oncotype. Wish my hospital had a tumor board so I could get multiple opinions but only one tx recommendation. Thoughts/ suggestions appreciated. Thanks
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yogamom, I can’t talk about the test results but when I was struggling with sentinel and auxiliary node surgery, I decided to get a second opinion. I went to a breast surgeon in a different practice and did get good info that helped me decide what I wanted to do. Hope you can get some more info from others. Take care
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Thanks MACTAZ, I will be discussing getting a name for a 2nd opinion from my BS but she suggested this RO because she's generally progressive & conservative w/ tx. After everything that so many on this forum have gone though a little radiation seems trivial but should BC return later it eliminates the option of another lumpectomy. Over treatment of early DCIS is common and I'm trying to be as conservative as possible. Lots to consider. Hope you are healing well and enjoying drain free life!
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Hello, I still have 6 Taxol treatments to go before I have surgery. Probably won’t be until April or May, but I noticed this topic. I want you ladies to know how much comfort & aid your information has been for me. I want to be as prepared as possible for my surgery.
There is especially much good info in the TMI subjects so don’t ever think those subjects are not proper. I appreciate the honesty that is shown here. Thank you wonderful women for posting this kind of info.
Doris
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I’m also 3 weeks out from surgery today. I’m healing nicely though the Axilla incision is still tender. I’m using vit. E oil recommended by my BS. Anyone using something else on their incisions? Got my Oncotype score today and it’s 5 so no chemo. I have an appointment with the RO next week. It’s been nice to have a week without CA appointments. Stay strong ladies.
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Mactaz and BeingPositive, thank you. Actually I have a change in my pain to report - it dissapeared 😲 just like that! 2 nights and 2 days without pain, I am feeling like a different person!! No pain pills either. Of course there is some discomfort, occassional pulling and the like, but otherwise - nothing. I am amazed. I wonder whether it will come back, maybe with the filling... but for now, no pain and I am happy
Pommom, good for you to find this thread. Read all you need, it will help you to prepare a bit...
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jaboo, great news. My pain also went away, lasted about the same amount of time as yours. It get this short little zaps every once in a while and am sore around the edges, but that is it. Glad you are feeing better
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yogamom2 I'd get a second opinion, seeing another MO, it might give you a different perspective of something you are not aware of right now. And piece of mind that you are doing the right thing once you reach a decision. It is very common in cancer world to consult another specialist and i am sure your surgeon wont have an issue with that. Have you found other people who used the same MO to ask about their experiences and their opinions?
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So I am home from my appointment with my MO. I will be getting back in the chair. I only have to do 4 cycles of carboplatin(?). It is every 21 days. It's not the worst thing in the world.
My MO did ask me to do a clinical trial for immunotherapy. She said I'm a perfect candidate for it. I have decided that I will do it. I won't start that until I finish with chemo.
I hope you all are doing well.
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I'm 4 weeks out and continuing to heal well.
The scar became more sensitive in week 2-3, especially under the arm, but that has calmed down.
I also started having crying episodes in week 2-3, and ended up seeing a doctor to get SSRIs, which have been helpful. When the scar pain calmed down and I finally found a pocket camisole that worked for my UMX, that also made me feel better (it's the Amoena one - originally I thought it wasn't going to work, but I just needed to size up).
Still doing my exercises to try to get my chest and side muscles stretched out again.
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Notgivingup, what a great attitude -you are a tough lady. I had 6 rounds of carboplatin, taxotere, Herceptin and Perjeta. Most of the SE’s I had came from the taxotere, so hopefully you will tolerate carbo and get through it without to many issues. I read a little in immunotherapy, sounds promising, good luck with the trial.
Alto, thanks for the update. I’m glad you are recovering and hope you continue to bet better.
Sending good vibes to all
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Notgivingup, I have a friend who did just Carboplatin for lung cancer, and she tolerated it very well other than fatigue, and did not lose her hair. I think you are right to press forward and throw the book at the TNBC. Your TNBC sister is pulling for you!
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Notgivingup, I have a friend who did just Carboplatin for lung cancer, and she tolerated it very well other than fatigue, and did not lose her hair. I think you are right to press forward and throw the book at the TNBC. Your TNBC sister is pulling for you!
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I had a bilateral nipple sparing mastectomy on January 10. No cancer & only 1 lymph node removed on the right side. I have a hematoma on my right side, noticeable right out of surgery. Drain on that side stayed in for 3 weeks with dark red/blackish colored old blood. Just days after taking out my drain the hematoma doubled in size, turned purple and hardened like a rock (not infected). After waiting, praying and babying the hematomaI I ended up back in the O.R. yesterday to have it drained/scraped out. I'm 24 hours post-op and I think it's already getting a little bigger. Has anyone else encountered this issue? Any products, tip/tricks for healing? If I have to lay on couch or "take it easy" one more day I might lose my mind! Thank you in advance!
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