January 2021 Surgery Group
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susiemommie: I had baseline assessment presurgery. Compared to everything else I’ve been through, this was easy. They took some measurements of both arms, looked at the range of motion for both arms, told me what to expect moving forward.
I have my first post-surgery physical therapy appointment tomorrow. Not looking forward to it. My arm (and arm pit) are still super sensitive and I haven’t been doing the exercises. (I’ve done some.)
I also have my oncology follow up this week, so I’ll learn their recommendations for next steps now that pathology report is in
meet with radiologist next week.0 -
I had my first post surgery physical therapy today. For those who are curious they measured my arm and compared to pre surgery baseline (I still have 2 cm swelling)
they then performed a ... massage... trying to teach my lymph system new pathways to drain.
As I said before, PT appointments are relatively painless compared to all the other things (surgery, biopsy, chemo, blood draws, scans, etc).
The process will likely be at least 8 weeks long.
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Well, I get to join the February surgery board too. Lucky me. The surgeon called today and basically said there is too much DCIS to get clear margins (and not enough breast to work with!), so I am meeting with the plastic surgeon on Thursday to discuss right mastectomy with reconstruction. Good news, it's still just DCIS, nothing invasive, nothing in lymph node. Bad news, need more and bigger surgery. Good news, no radiation and no hormones because its ER negative. Just for fun, I also have a colonoscopy scheduled for February 10th. Good times! LOL
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MEM127 - sorry to hear about the more extensive DCIS - I can totally relate. At least you can avoid the 2 extra lumpectomy surgeries and you found out now as well as the radiation and hormone therapy (good to look for the silver linings)
My other update for today is that my husband removed both of my drains today. It was really easy and very little discomfort! I’m so happy to be done with those! Hope all of you are doing well
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I'm back home, surgery was yesterday. I was very apprehensive but the nurses were fantastic at explaining everything and for having nice, normal conversations too. The patch did help control nausea: I had none. I opted to get the block and woke up not feeling that awful. The sentinel mapping was quick and not a big deal, I only felt the numbing shots. I'm uncomfortable but the entire thing isn't as awful as I pictured. I'm just glad I'm past that, now waiting for the pathology report.
MEM127- sorry to read that you need additional surgery. I'm finding out that there are too many surprises with cancer. Your colonoscopy comment made me laugh! Sometimes life is just a series of miserable events and humor make them easier to go through.
NotascalmasIlook- none of my doctors have suggested physical therapy but I found a certified lymphedema PT not too far from me and plan on giving them a call. This site is just loaded with insightful information! Thank you.
Kimberly1981- I'm glad you are on the other of surgery and that you have loads of support at home. I do have support at home from my husband and as it turns out teenagers can be so helpful at times too! I was ok with the one night at the hospital despite our bad covid numbers, but I certainly didn't want to stay two nights! There really is no place like home!
KLMN surgery drains are just glorious, are they not? Your husband gets major points for freeing you from that!
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MEM127 — Ugh, sorry to hear. As GreenOutdoors said, too many surprises with cancer!
We got our own surprise. Pre-surgery, I was diagnosed wit DCIS, but pathology found both DCIS and invasive ductal carcinoma. Yay. Right now, my doctor is hopeful. We still got clean margins and this new IDC is small, which is probably why they didn’t pick it up in my needle biopsy. We’re now adding a lymph node sample to my mastectomy in a few months. Given the new pathology, it makes me feel better that we chose the mastectomy route. Still sucks.
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Has anyone had to resume infusions post mastectomy? I have herceptin + perjeta scheduled for tomorrow but I can't fathom sitting in an infusion chair for 2 hours. My pain and discomfort is manageable while I'm cradled in a nest of pillows on my bed, but moving around is not pleasant. Thinking about seeing if I can postpone by a week...
Also, I HATE sleeping on my back. I cannot wait to have these drains out and be able to sleep on my side again!! I'm hoping I might be able to get them out today and be able to take a glorious shower again! I hope everyone is healing well and things are getting easier each day.
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Hi everyone,
Reporting in on D+2 after Monday's BMX. Everything went fine from what I can tell. Thanks to what many of you shared on this topic, I opted for the nerve block, which was a good thing. My discomfort is minimal (the tape over one of the drain incision sites is the worst source of pain when I move). I also got the anti-nausea patch, and that seems to have been effective. They were willing to discharge me at 8pm that night but I opted to stay over, and I'm so glad I did that too. The nurses were fantastic, and I had a chance to see how they checked and handled my drains.
Like GreenOutdoors and many others here, I'm waiting on test results now, and hoping for good news... for all of us who are waiting right now. I am also really looking forward to getting the drains out, hopefully soon.
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Kimberly -- I got a lumpectomy not a mastectomy -- but they delayed my H&P infusions by a couple of weeks after my surgery to give me a chance to recover a bit more. I was originally scheduled to get an infusion about a week after surgery and could have done it without a problem, but my oncologist insisted that I wait a couple of extra weeks.
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had surgery 1/15 and my daughter removed drains ( she is an RN) 11 days post-op. 1st drain al little uncomfortable & more difficult to remove than the 2nd. Wasn’t having much drainage in either. Beginning to wonder if they were kinked because since then the drainage has increased. I’m also having more discomfort & left chest swelling in last few days. Contacted SO & sent photos. No signs of infection, thankfully! Warm compresses are helping with discomfort. One drain site still open so still good amount of drainage. Helps lessen swelling in chest and relieve discomfort. Ibuprofen works best. Also taking Acetaminophen for pain control. All in all 1 st week easier than week 2 post-op for me.
Wish you all well! Hang in there! We will get through this
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Thanks, Melbo! I called and delayed until next week.
And I got my drains out today - hooray!!
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just received best new ever! No residual cancer in the breast or 7 axillary nodes removed!!! Thank-you God! Since I was Stage IIIC, will still need radiation and immunotherapy to complete the year, but, feeling like I can handle anything right now! Hope is only 1 call away! prayers for all every day ! Hoping everyone can experience this same feelng of hope .
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Good morning everyone,
DeniseML--That is such wonderful news, I'm so so happy for you!!!
MEM127--I'm sorry you have to deal with all this additional stuff, it's so hard. I got blindsided myself a few times already since being diagnosed and it's the worse. I hope you hang in there!!!! Let me know if you have any questions about the mastectomy process!
Kimberly1981--Hurray for all drains coming out! I agree that sleeping on the back is horrible. I use a wedge pillow and an infinity of other pillows of all shapes but still have not found a comfortable way to sleep.
I'm on day 8 post-op and doing well, except for the huge anxiety that comes with awaiting the final pathology report from surgery. I won't know anything until Feb 3 at least. I am bracing myself for a situation where they will end up finding some IDC on top of DCIS (which we already know has microinvasion). They usually don't test for HER2 status with pure DCIS, but because of the microinvasion they did test mine and I'm HER2+++ (hormone receptors both negative). So based on my research, even the smallest IDC would warrant chemo and herceptin, though honestly I'm not sure if HER2 status can change when cancer is/becomes IDC. Can't wait to talk to an oncologist to help me navigate this poorly understood "in between" DCIS/microinvasion/potential IDC situation I find myself in.
In terms of recovery from the mastectomy, I really can't complain. They removed 2 of my 4 drains on Wednesday, and I'm hopeful that the other two will come out Monday or Tuesday. I haven't had to take Tylenol around the clock the last couple of days because the pain is really quite mild, it's mostly on my sides, around the drain incisions, and under my left armpit, where they did my sentinel node biopsy. That arm hurts. The rest is basically tightness and mild discomfort. I do a lot of stretching exercises and feel much better after each session.
I also wonder if this drug that I've been taking since being diagnosed to help me get through this health crisis--clonazepam 0.5, which is a benzo but also has muscle relaxing properties--is helping with my overall comfort level. I've always been so against taking drugs of this kind (always believed more in therapy), but in my case I have to say that the clonazepam has been a HUGE blessing in terms of reducing my overall anxiety and catastrophizing and helping me sleep and lead a normal life. I would highly recommend it to anyone who feels overwhelmed and hasn't attempted this route yet. I also see a therapist a couple of times a week, and I find that the combination of the clonazepam and being able to mourn and talk about my feelings with a therapist is incredibly helpful.
Wishing you all easy surgeries if you're still facing one, and much strength and light ahead!!!!!!!
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Just checking in to see if everyone is still recovering well.
DeniseML - that is wonderful news.
Jasmin2020 - hope you get good news on the 3rd.
I'm going back in on the 16th for the right side mx. I hope all your good recovery vibes come my way!
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Good morning,
I sincerely hope you are all recovering well and getting lots of good news from pathology! I’m sorry for those of you needing more surgery and additional treatments.
I just wanted to update with my pathology results. I knew going into surgery that I had bilateral IDC. I was mostly concerned about the left side. That side is fine, 8mm tumor, no positive nodes, stage 1. Prior to surgery I was told there was a satellite tumor but pathology didn’t find that.
The right side isn’t so great, two tumors, one 2.7cm the other 5mm, 1/1 positive node, stage 2B.
My MO is reviewing the report before deciding which chemo treatment will be best for my case, he said I’ll start in 3-4 weeks. I am also being set with an appointment with a radiation oncologist to discuss axillary, breast bone and collar bone radiation. I’m feeling angry that my dense breast tissue hid all of this and I’m just really upset. I’ll be ok, just need to feel sorry for myself for a few hours.
On the good side, surgery recovery has been going well, pain is minimal, discomfort I think is from the tissue expanders. The drains are annoying but manageable and my reclining couch is my best friend! I can’t recommend a reclining chair/couch enough for those facing breast surgery.0 -
GreenOutdoors — My pathology report sucked too. Went into surgery with DCIS so not invasive. Pathology came back with a small 3mm spot of IDC. Oh, and it’s triple negative. So headed to onco soon, which was not part of the original plan, to see if I need to do some chemo. We didn’t take lymph nodes because weren’t expecting the invasive stuff so that’s on the plate now too. It just sucks. I‘m now 1A, which isn’t bad, but the pathology just went the wrong way. Although it confirmed that the mastectomy was the right plan from the beginning
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GreenOutdoors and Knitnerd - I’m sorry. I wish you both had heard better news. Hang in there. You know you have all of us, to lend an anonymous ear
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KnitNerd thank you for your answer. I’m sorry your report also gave you worse news. It seems like you have a sound plan B with a mastectomy and sentinel biopsy. I'm hoping yours will all be negative nodes and that the plan doesn't change yet again. Maybe you won’t need chemo? That's been the worst so far, the always changing diagnosis. I’m glad both our teams are still optimistic about our outcome.
MEM127 thank you for listening!
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My surgery was January 27–left breast mastectomy and sentinel lnode biopsy with tissue expander placement. I was expecting a central lumpectomy but my surgeon advised the change minutes before surgery. That was tough. I had my post-op appointment today. The pathology report confirmed Paget's Disease and DCIS and that all was successfully removed and lymph nodes were negative. I'm very thankful. I'm expecting at least a couple of more surgeries for reconstruction, but trying not to think about them too much. I'm having pain under my arm. My surgeon mentioned cording to me today so I'm trying to learn more about that.
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Joan272021
Cording can happen after lymph node surgery, I got axillary node dissection, it can make you have limited motion in your arm, I may be referred to a physical therapy (just my experience)
Thanks
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AB45,
It's like a totally different language and world that I'm having to learn about. I'm thankful for breast cancer.org and the communities here. Good luck to you.
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Completed chemo December 18th, had double mastectomy on January 21st. Both the breast surgeon and medical oncologist we're disappointed to see that the chemo only reduced the lump from 2 1/2 cm to 1 cm. Although the tumor was removed with the double mastectomy and the Sentinel lymph node biopsy pathology was negative, my medical oncologist still wants me to go on an 8-course treatment of Xeloda. I guess I don't understand the point of it if they had removed the rest of the lump during surgery and with the negative pathology. The medical oncologist did say that if chemo had obliterated the lump he would not even recommend the Xeloda. Thoughts and opinions?
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Not sure if we have a separate thread for follow up surgery updates? I think for those folks facing what we went through in January it would be good to tell of experience. I had double mastectomy on January 6th with sentinel node biopsy just prior to surgery. I was terrified of the SNB but didn't feel it. Applied the lidocaine prior to the drive to hospital, went in little room and dye injected. I have to say didn't even feel the needle and over in one minute flat. The wait was the hard part. From there zipped over to surgery. Hubby was a nervous wreck but for some odd reason I was calm. Surgery was scheduled at 1pm and of course was a little later before I was wheeled back. But to back up a little. I really liked the warming blanket which was an inflated michelin man blanket. Would like to have one of those at home! They hooked me up to IV's and wheeled me back to surgery center. I remember seeing all the surgery stuff scattered around and next thing I remember I was waking up the next morning in my recliner. My husband on the other hand had a horrible day. The surgery was six hours and I kept getting sick when they tried to get me awake. He said they would give me medicine for the nausea and that would knock me out again. They left him to get me dressed which was not right as he was trying to dress a zombie. He called the neighbors on the way home and they met him at our house at 12am and helped him get me out of the truck and in the house. Bless neighbors for being such good friends to hubby (they don't always like me because I am too opinionated:). There is a vague memory of being sick sometime in the night but it was more like a dream than anything I really remember. I had to wake hubby for the trip back to the plastic surgeons office the next morning at 10 am. Needless to say I don't remember much of anything of that first week at home. All in all the surgery was not that bad and I had very little pain afterward. I credit that to my husband as he was very diligent in making sure I had Tramadol/muscle relaxers/Tylenol/Advil in the rotating schedule advised by the PS. The only time I really felt pain was when I accidentally pushed myself up on the bed with my arm. Not something I made the mistake of doing again that is for sure!! I am 7 weeks out and can once again use my arms but definitely have a loss of muscle tone and can't go full extension over the head but that is slowly coming back. I have tissue expanders which is another story in itself. Much more uncomfortable than anticipated and looking forward to implant surgery like you wouldn't believe. To all facing what I just went through please know there is a light at the end of the tunnel. My decision for a double mastectomy was drastic but due to other health issues I felt it best decision for me and the surgeon told me I had made the right decision because the left breast pathology was indicative of heading towards cancer also.. No invasive cancer found from pathology although DCIS was larger than thought and nodes were negative. No chemo or radiation for which I thank my stars every day. All in all the best of outcomes considering where I started.
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