December 2020 Surgery Group
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Hi all, just checking in to see how everyone who had surgery is doing.
KMouse: so sorry to hear about the + lymph nodes. I hope next steps go okay and will check back to see.
I don't know if I feel abandoned by my surgeon, I understand it is the holidays but I don't feel like I really was as prepped for after in terms of some things. Like the emotional issues I've been having and the bra challenges. I wasn't given any info about that before hand and it's been okay but I have some pain - more like twinges and some shooting pain. From here, I can see that may be normal and also discussions with a friend who is an MD.
In general, I'm feeling worn out from dealing with this on top of the COVID quarantine restrictions for so many months. My husband didn't even go into the hospital with me because of his worry and risk and then yesterday at the store, I see a guy walking around blatantly without a mask. (I'm in Sacramento CA). It really pissed me off. I feel like I don't have the energy or positivity to face the next steps (radiation) even though I know intellectually I am fortunate. I tried to chat with my husband about this earlier; he wants to be positive which is fine but I feel really alone.
I do "see" via telemedicine a therapist every other week. I'm just feeling like no one gets it. Heck, I don't get it half the time. Sorry to be debby downer. It's been a year.
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Bennette - You're going through a lot, you have every right to feel emotional! Do you know yet when you'll begin radiation? My oncologist told me that I shouldn't be going anywhere even though I've already had covid and I got a flu shot, so I've been ordering things online and doing grocery pickup and I've found that I really love it and don't miss shopping at all.
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kmouse, so glad surgery and recovery have gone well for you. Sorry about the lymph nodes. Is your dissection scheduled yet?
Blue1002, the tissue expander (I have one) is weird. I have my first fill on the 7th. Have you had a fill yet and did it help? I hope your CAT and bone scan went well. Thinking of you!
Morningstar, I’m hoping a fill or two will help with the expander. It sure is bumpy and lumpy. I got one drain out last week and will get the remaining one out on the 7th. I can’t wait!
Mtspacekace, so glad you got your drains out! Sounds like great news on the negative lymph node. I hope you have been able to go over your report with your doctors.
Positivelyhalffull, great news on your sentinel node biopsy!
C00I, how are you doing post surgery? Hope you are recovering comfortably!
It’s great to read posts and see how everyone is doing. I’m doing well and learning patience 😊. I am looking forward to the last drain being removed on the 7th. I will also have my first fill of 50cc that day. They will take the fills slowly since I had radiation five years ago. The skin sensitivity is still there. It might be somewhat better. I was also told it is nerve pain from the irritation of the nerves during node removal and that it should improve as swelling goes down. My pathology report came back with negative node and DCIS as the only finding. I feel extremely fortunate.
I had radiation five years ago if anyone has any questions about my experience. I would be happy to share. Mine was left sided done in the prone position.
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Hopeful - I'm so sorry that you've had this recurrence. You are fortunate for having caught it early both times. Congratulations on the negative nodes! Do I understand correctly that your skin still bothers you from the radiation you had five years ago? I see that you chose mastectomy this time instead of doing another lumpectomy. Sometimes I wonder if I made the right choice to have lumpectomy instead of mastectomy. It's hard to know.
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positivelyhalffull, my skin was great after radiation five years ago. The lumpectomy scar was barely visible and I had no noticeable difference, skin or otherwise, between the radiated breast and the untreated one. There was some dimpling on the breast below the nipple when I lifted my left arm. This was where the lumpectomy was performed so there was some volume loss. It was not at all noticeable otherwise. The skin sensitivity I am experiencing now is from the mastectomy/sentinel node biopsy and seems to be a common issue. With this recurrence, because I had previous radiation and they do not repeat radiation on the same breast, another lumpectomy was not an option. My breast surgeon told me they are doing repeat lumpectomy without radiation if the recurrence is greater than five years out and it is lower grade DCIS. Will you be taking arimidex or tamoxifen?
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I had a lumpectomy on Dec 30, and everything is going well so far. My scar is incredibly ugly - is this normal? For those that have jobs, when did you go back to work?
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hopeful - Thank you for sharing your lumpectomy experience, it makes me feel better about my decision. I'm sorry that you didn't get a choice this time. My doctors haven't talked about Arimidex or tamoxifen.
Twinkle - I had my surgery on Dec 31st. I haven't been able to see my scar yet because of the steri-strips and stitches. My surgeon said I should take two weeks off work mainly because of the lymph node removal under my arm.
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positivelyhalffull - my incision has clear strips over it, so that's why I can see it. I didn't have any lymph nodes removed, so I believe my recovery is easier. I have 2 wks off, but I don't know if I'll need all of that time. I want to save my sick/vacation days for when I'll have radiation. I know it'll be tough going everyday.
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Thank you for your response, #nervous but all of you strong ladies gives me hope
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Positivelyhalffull I have my post op appointment on Monday and from what the surgeon told me, that's when I will be referred to radiation and medical oncology. So those appointments, and treatments, are still pending.
I wasn't told to do or not do anything. Other than not lift anything, but I've been doing some of that. Not meaning to, but it happens. I wasn't even given clear instructions about the meds; my husband picked up 6 which included oxycodone, tylenol and ibuprofen along with stool softeners. If I felt like it could be managed, I'd have my husband shop. I will have to see what happens after the appointments. I may not be able to be out. The virus is nuts here. thanks for responding.
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twinkle—not that this is much help, but I had a dmx with tissue expanders (filled to 450cc), one node removed...2 weeks ago, and I feel like I could handle going back to work on Monday (which would be 16 days post surgery). I’m going to assume you don’t have drains, which was what kept me from leaving the house mostly. My surgery was way more than yours...so I’m going to say you will not need the full 2 weeks of recovery time! I’ll be thinking good thoughts for a speedy recovery.
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twinkle- very normal to have ugly scars, at this point. I cried for days after my lumpectomy two years ago. But they healed nicely.. now I’m 2 weeks post op on my mastectomy and yes I cried again looking at those scares. As my children told me, “Mom you have to trust the process” ... it looks better every day... I was back to work pretty quickly for my lumpectomy but it depends on what you do for work. I’m taking extra time off this time.
Does anyone have terrible swelling in the shoulder blade? Swollen and numbness.. that’s what’s bothering me the most .
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Thanks for your info. I’m really hoping my incision is not infected. This is the 4th day since my surgery, and I feel a lot worse than the previous days. Just really down today.
I’m sorry that you you’re going through the mastectomy 2 yrs after the lumpectomy. So much to go through
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Thank you for the well wishes! I hope you continue to feel good
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Stacey, I don’t have swelling or numbness at my shoulder blade. Have you had any improvement?
Twinkle, hang in there. This is a tough process, but we will get through it. I think it’s difficult to know what the final result of an incision will be so soon after surgery. I hope you reach out to your doctor if you think there could be an infection.
I need to take my own suggestion and remind myself that I will get through this. This skin sensitivity/burning is really getting to me. I’m so tired of being uncomfortable. And I’m disappointed in myself for not being tougher especially when I have so much to be thankful for in this process. Getting the drain out this week will certainly be a step forward, so I’m going to hang onto that.
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hopeful23 - Five days ago I was still extremely uncomfortable - everything still felt tender and sore, with the burning skin sensation and implants that felt like heavy, sharp-edged wooden blocks on my chest. Every day since then, though, I've felt incrementally less uncomfortable. The wooden block feeling is gone and the burning sensation is significantly reduced (though now I've got some phantom itches - totally manageable, though). There were several long stretches of time yesterday when I didn't even think at all about what was going on in my chest!
Based on what everyone else has been experiencing, it looks like this is all part of the normal healing process. That doesn't make it any easier to bear while you are going through it, of course, but it will pass. I certainly felt exactly the same way as you are feeling - both extremely uncomfortable, and disappointed in myself for not being tougher when I, too, have so much to be thankful for. Here's the thing, though: you ARE toughing it out; you ARE putting one foot in front of the other, and moving forward despite significant physical distress; and, you ARE dealing with all of this in a strong and appropriate manner not only by sharing your experience with other people who are going through the same thing, but by also consistently supporting everyone else in the process.
I hope you are feeling better soon!.
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I had my lumpectomy on Dec 30 - not sure how to add it to the list. I was worried about my incision being infected, but I emailed a picture to my BS nurse (secure email), and they both said it was fine. I’m so relieved bc I was pretty stressed out yesterday. How is everyone feeling today
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typhoon, thank you for your encouraging and caring post. It was much needed. Today has been a better day 😊I’m so glad you are doing well!
Twinkle, I have added your surgery to the list. Wonderful news that there is no infection! I hope you continue to feel better!
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Bennett - I’m sorry for all you have been going through. Has your incision healed quickly? I was feeling very alone before my surgery even though I have supportive family, friends, and church. I found it very hard to describe what I was feeling. Even now, I sometimes feel as if I’m watching myself go through everything, but it’s not really me. I want to get this over with! It’s hard seeing a lot of these women going through a recurrence because it has to be so discouraging. I hope all goes well with your radiation.
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I’m very interested in finding out about your radiation experience
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I broke up with my breast surgeon today! Or he broke up with me... My lymph nodes were clear, my margins were clear, and I’m healing great! No need to see him again! PT was an eye opening experience as I didn’t realize there was so much to watch for and be careful around the lymph system. But I got new exercises to work on in 2 weeks. And strict instructions I can’t just pick up my knitting again and spend hours doing that.
Also met with my plastic surgeon. Everything is good there, will return in a month so to even out my expander fill, as one looks smaller than the other. But I’m to continue to take it easy and heal.Also, waiting for my oncologist to review my pathology to see if I need radiation, and then will continue targeted therapy!
Happy healing to all of you ladies!!! Hoping and praying that everyone’s journey is going well
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So happy for you! Been lurking on the site for a few weeks now. I had bilateral mastectomy on 12/18 and just got my drains out today. Found out my margins were clear as were my lymph nodes (sentinel). Plus oncotype came back as 7 so no chemo or radiation. Now just waiting to talk to oncologist about estrogen blockers but since I have no uterus or ovaries, I may not even need that. Best part is I can take a shower tomorrow!!
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mtspacekace - Congrats on the news! Out of curiosity - as a fellow knitter who is going to have some nodes removed - what's up with the knitting? Is that permanent or just while you're healing?
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I’m having pain in my breast after lumpectomy. It’s not horrible but it definitely warrants taking ibuprofen. A lot of articles I’ve been reading have said there isn’t too much pain after 2-3 days. What have you experienced
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Kimberly1981-Not permanent! My pt said that things you used to do can over work your lymph system so you have to train it... We were taking about golfing and how I would have to work back into that (even if it’s months after surgery) and out of curiosity asked about knitting (because honestly I didn’t think that would be affected) and she said to set a timer for 20 minutes to start and work my way up...even the smallest little pain, what normally you would write off and push yourself could be your lymph system telling you it’s too much. And if that happens, you can either quit the activity or wear a sleeve (which they make really fun ones) so I’m going to try and take this pt serious, because the lymph system is important.
I got a call from a radiation oncologist to schedule an appointmenttoday, so I’m going to assume that means I’ll be headed for radiation next. The nearest place to do that is a 2 hour drive. I think I may look at renting a place for the 5 or so weeks...because even though we have had an extremely mild winter, my luck the roads will get miserable as soon as I have to travel them daily.
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mtspacekace...I have my radiation simulation scheduled for January 21 and radiation will begin Jan 25. I decided to go to Mayo for it so I will be staying there for almost a month. My radiation oncologist is going to do the hypofractionated radiation which is done in 3 week with 4 boosts. So rather than 6 weeks there I will stay 4 weeks. My wonderful friend will come and stay with me for some of the time, my sister in law will come for a few days and Hubby plans to come the weekend of his birthday and then will fly down to drive me home when I am done. It is a 7 hours one way trip so thankful for his help. I was able to get an apartment style rental through the Mayo clinic for $65 a night. There was a property management company that had a beautiful 2 bedroom condo for $2800 but the cancellation policy was too rigid. In our world of covid I did not want to be stuck with that bill in the event I could not do my radiation at that time. And yes our winters can change quickly. The apartment has an on demand shuttle service that will take me wherever I want or need to go so I shouldn't have to drive anywhere if I don't want.
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Twinkle - I'm sure everyone's experience is different, but my lumpectomy was the day after yours and I've had little to no pain in my breast. When do you go for your followup with the surgeon?
Rmh - Congratulations on the fantastic news!
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mtspacekace, so happy for you! If radiation is needed, I have no doubts you will do great. It would be challenging to drive 2 hours each way for appointments, especially with the possibility of wintry weather. They do not want you to miss any appointments. I hope your appt with radiation oncology goes well! I'm a beginner crocheter and an avid golfer. Thanks for the info about taking it slowly.
rmh2744, what a great report for you! And congrats on getting the drains out! Enjoy your shower!
Twinkle, hopefully others with recent lumpectomy will be able to tell you their experience. I had lumpectomy five years ago, and although I don't recall much discomfort it's been a while and I think we tend to forget. I hope you are feeling better today. Please don't hesitate to reach out to your doctor.
Iamloved, you have a terrific plan and wonderful support. Please be sure to update us on how you are doing.
My radiation experience: I had whole breast radiation five years ago. Hypofractionated for 3 weeks with 4 boosts. Left breast done in the prone position. I did not do the “breathe and hold" done sometimes for left breast because my simulation indicated my heart and lung were not going to be affected. I remember having a CT scan and having several sharpie marks on my back/sidewith tape placed over the marks. You live with these the duration of radiation. Although it seems they would be annoying, they really didn't bother me. I think some people get tattoos, but that was not offered and the sharpie did the trick. I could shower, and they would re-sharpie as marks faded. The hospital where I had my radiation was very accommodating and made these daily visits as easy as possible. They had parking reserved for radiation patients right by the door. At your appt, they would call you back and you would undress waist up and put on a gown, and then wait in a room by the dressing rooms for your treatment. For treatment, you go into the room with the machine and they get you in the perfect position for the radiation. I was prone with my breast basically in a hole in the table and my neck turned to the side. Although the treatment was fairly quick, I learned to make sure I had my neck in a comfy position before they had me all set up and asked me not to move. I did great with radiation. I don't recall fatigue although that is certainly a common complaint. They gave me cream to use. My favorite was “Geritrex Hydrocerin Moisturizing Cream for Dry Skin.” It is basically a heavy cream. I would go into the bathroom after treatment to get dressed and put the cream on liberally. Don’t wait until you get home if possible. The cream “cooled” my skin and I think the immediate application really helped. After the first few days (and before I learned to put the cream on right after treatments), my breast was getting pink and I was concerned. My radiation oncologist gave me a prescription for mometasone furoate cream. I don’t recall how often I used it, but I believe it was morning and evening. This cream was amazing and I had no skin issues whatsoever. You can look up studies for the use of this cream during radiation treatment. It has been shown to be a significant help for those who need it. Don’t hesitate to see your radiation oncologist during treatment with any concerns or questions. You want to stay ahead of any concerns you might have.
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positivelyhalffull - I go back tomorrow for my post op. I’m glad you’re not having any pain.
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hopeful - Thank you so much for all the radiation info!
I'm really struggling with when to return to work. My surgeon wants me to be off for two weeks, but will release me to do desk work sooner if I think I'm ready. We are very busy at work and I began hearing from coworkers about upcoming deadlines on my projects four days after my surgery. I don't think they're trying to pressure me to return, just keeping me updated. I feel generally good. My sentinel node incision is sore and I occasionally have shooting pains along my shoulder and arm, but it seems manageable. I have enough paid sick leave to cover the full two weeks and to be honest, I think I just want the time off to relax and feel sorry for myself for having cancer, but maybe that's a bad idea. I went to work many days during chemo when I really didn't feel well and I think that was a bad idea too.
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