March 2020 Surgery Group
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great news 2girlz1boy!!! I am home after double mastectomy yesterday...my surgeon came out and told me no cancer in the lymph nodes!! Yay, now I wait two weeks to get these drains and wound vac removed and to find out pathology results!! Stay safe everyone!🙏❤️
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Sage - I am also at UM. Who is your surgeon? My surgery was on Feb 27th. I am so frustrated with the clinic being shut down. I should have been 1/2 way through my 6 planned TE fills by now. I cried and cried when they called to cancel the first. I was so looking forward to that date on the calendar! I am adjusting now that I realize how bad the virus is spreading here in MI.
2girls1boy (and Sage) - the drains coming out is NO big deal. I, too have vasovagal syndrome, so I get the passing out issue. I will tell you this: I didn't even know when she pulled it out. I had worked myself up into a nervous wreck when I went in. I had to lay down and take big breaths because of the fear I would pass out. She assured me it would not hurt. And as she said that she was putting on the bandage. She had pulled it out and I didn't even feel it! lol
Also the hormones and emotions are NORMAL. I am now 4 weeks post-op and cry at everything. I am not a crier but this ordeal has made me into one. At first, it bugged me, but others remind me this is perfectly normal. Here is my not so experienced advice: go easy on yourself. Give yourself space and permission to feel all the emotions. It will help you heal emotionally. Physically? Rest, rest, rest. In fact, I plan to take a nice long nap this afternoon. I am a go-go-go person, so I am not used to inactivity. But my body tells me to rest, so I do.
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OnlyGirlof5-my breast surgeon is Dr. Jeruss and my plastic surgeon is Dr. Wilkins. How about you? I was frustrated too when all TE fills and PT cancelled but what are you gonna do? I certainly could not handle the Coronavirus right now. Not sure my body could handle that during recovery. And as you know, SE Michigan is now a hot spot. Recovery after my first surgery was with a full hospital but when I went back for my emergency surgery the place was dead as all non-essential surgeries were cancelled. I had the recovery floor all to myself. It was the silence before the storm.
I am nervous about the drains... removing the stitches and getting the drains out easily as I had a drain 9 years ago when lymph nodes removed. However, that drains have changed and are much easier to get put (so I hear). So nervous still. But I know I will feel much better once they are out. I hate hate HATEthem
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Sage-my SO was Dr. Chang, and I also have Dr. Wilkins. Based on all the clinics now closed and merged at the hospital, I am guessing my next week's tentative fill will also be cancelled
They were hopeful they would get back on track by the end of this next week, but probably not. His nurse told me on Wednesday they are very backlogged and really want to keep all of us on track. You are fortunate you were scheduled before they began all the surgery postponements! I sequestered myself and worked from home for 2 weeks before my surgery, so I am now going on week 7 of staying put. It's getting very old!My husband watched the entire drain removal and said it was a smooth process. A snip of the stitch and Lauren pulled it right out. Like I said, I didn't feel anything. You can do this!
Yes, the drains suck. They sucked every single minute they were in. I wish I would have figured out earlier, but the last 3 days we started taping the tubing to my side. This made it so much more comfortable as the tubing wasn't getting bumped. My husband wrapped a small amount of gauze around the tubing and then place the tape over the gauze and then to my skin (about 4 in below the incision). That way, he he didn't have to pull the tape off the tubing when he milked it. Like I said, every bump was becoming uncomfortable.
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@ onlygirlof5 that is such a relief to hear! I am have anxiety about it already!
@ maryjv that IS great news - nothing in the nodes!
Today started off MUCH better ! I got 9 hours of sleep, felt energized when I got up! Made the coffee, had tea on the porch (40 degrees in Maine in March is amazing!) and stayed sitting up for 2+ hours.
I have found it hard to sit upright for any length of time before pain starts in.
I took the bra off for a few minutes this afternoon, let the ladies breath a bit. Finally checked out my scars and bruises... the side with the node removal is the size of a softball and the other side a tennis ball.
Drains are much clearer, hoping to have them out next week. I have to drive 2 hours to my follow up appointments, not looking forward to making that drive on these damn rough roads three times next week. But if it means these things come out.... I'll do it!
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Just came from PS office and I was able to have one drain removed! Yippee! The other drain is still putting out fluid like crazy. So I’m still on lockdown with movement. My fills are now being scheduled 3 weeks apart due to the pandemic. I’m okay with that considering you wouldn’t be able to schedule exchange surgery anyway
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My husband is a rock star! He just removed drain #1 and drain #2 coming out tomorrow. Thank you God. No TE expansion probably until June. *sigh* Besafe out there everyone.
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So I was ready to head to my appt Tuesday, 2 hours away when the dr called and asked about my output and decided to move it to Thurs. Man that was a disappointment! I washed my hair and did my nails for this, and it was the first time out of the house in over a week! LOL
I don't know about you guys but these expander thingys are freaking weird! My swelling has gone down so they are flat and wrinkly, weird feeling. I'm told they will fill out and be more comfortable. This was one of my fears of getting implants, the feeling of them in there and not part of me.
On the plus side I have more energy and able to get thru the day without napping twice a day. Sleeping well, actually quite comfortable propped up with my wedge pillow, I may keep that thing forever! (kidding , not kidding)
@AngieB92 that is good! I have my appt tomorrow ! Rescheduled from Tues, cause I wasn't down enough output.
Fingers crossed I am down to the level they want.
@sage I hope to get both done Thursday, I'm freaked about it! I don't know if I would let them do one, cause I prob won't get the other done! (kidding)
How was it pulling the drains, I have heard horror stories and I have heard it's nothing!
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2girlz1boy - don’t sweat it. It doesn’t really hurt just feels strang. It is so freeing and you will feel amazing after. I sure hope your outputs permit removal tomorrow. I can’t wait for removal of drain #2! Moving forward!
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@2girlz1boy - my TEs felt better after each fill! I’ve had 150ccs total and it made them feel less.....foreign.
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@2girlz1boy - my TEs felt better after each fill! I've had 150ccs total and it made them feel less.....foreign.
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OMG you guys! the drain removal was soooo easy! I didn't sleep a wink the night before, totally been stressing over it!
Dr. said she was gonna pull them, and snipped the stitch holding them in and started ripping the tape off, omg that sucked! She said breathe in and we'll pull them out, and before I could breathe all the way out, she says there you go, drain free!
What!@#$& Yeah I didn't even feel a thing! The worst part was the tape!
Then she drained one of my fillers cause it was causing too much pressure, that felt soooo much better!
So today I am a free woman!!!!! I can shower and raise my hands over my head stretching, so I can wear my hoodies again!
Amazing how these little things make you feel so good!
The WORST part of my day???? THE RIDE!!!!! 2 hour ride bumping over rough roads, caused a ton of pain! It was so weird cause all the pain was in my chest muscles and ribs, cause my boobs are numb and no feeling!
My oncotype has not come back yet so the need for Chemo has not been determined yet. But they did say NO radiation!
Day --whatever-- of quarentine.... I'm going crazy, but in the long run it was a good time for me to be recovering when my business isn't open right now anyway!
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2girlz1boy - Ah sweet freedom!!! I got my last drain out today and the freedom feels amazing!!
The doctor went ahead and drained some built up fluid off of my other breast. That didn’t hurt because my boobs were numb.
I hope you all are weathering our this weird time.
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How's everyone doing? We've made it to April! Still surreal these times of isolation.
I got a message that my oncotype results were in and I have an appointment with my oncologist Tuesday!
Fingers crossed it doesn't dictate that I will need chemo! They already said I don't need radiation thankfully.
I finally got out and drove my JEEP today with my pup! I've missed my girl so much! Our friends twins drive-by 3rd birthday parade was the perfect excuse to get her and take off the top! After all it was 50 degrees up here in Maine!
I'm personally feeling much better! My best times are in the morning! I get up feeling refreshed and energized, and by noon, I am done. Need a nap.
So discouraging I can't keep the pace all day, I know it will come back, just frustrating for me since I am on the going 110% all the time. I should be enjoying this down time! LOL
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Lovetoberestored I have the same burning, numbness and PAIN under my arms. cake8icing, I loved your description of your cat poking you with its claw. For me, the problem has been getting worse and there is not much that can be done since this is from nerve damage. I am a bit discouraged from all this. It is debilitating. The burning extends down my inner arms and around to my back/shoulder blades. PT is difficult. Is anyone else experiencing nerve damage due to having lymph nodes removed? Maryjv, how are you doing with your BMX with DIEP?
sage, your husband is indeed a rock star! AngieB92, I'm celebrating with you on the drain removal. It was a piece of cake. I got mine out last Thursday and I'm hoping that this might help my under arms feel a bit better.
Maryjv, I was sorry to hear your reconstruction is being delayed. My MRI was also delayed. I'm happy that your path report showed no cancer – that's wonderful news!
2girlz1boy, I'm celebrating with you that you had a great path report as well. My itchiness is better now. On my doctor's recommendation, I used some hydrocortisone cream for a couple of days, and everything felt better after that. I echo your issue with the RIDE. I only had a 15-minute drive to my drain appointment and I felt EVERY . . . LITTLE . . . . bump. Thanks for posting the picture of your pup. It still a little cool here in PA, so I have not been out much yet.
My path report was good and bad. My left side showed no more cancer in the breast or in the 4 lymph nodes that were removed. Unfortunately, my right side still showed cancer (microscopic cells and cell clusters of 0.4 mm or less). On the right side, 2 of the 4 lymph nodes were positive for cancer, so radiation is in my future. Starting in May, I'll have four weeks of radiation (Monday through Friday). I'll also be on chemo for a year (Kadcyla) due to being HER2+ (every three weeks). This may seem like a lot and IT IS, but I'm managing. The key for me is to try to have a long life while having MBC, (I had a small lesion on my spine that chemo helped.) Although having MBC means that I am Stage IV, my doctors have decided to treat me like a Stage III. Although I'm on board with being aggressive to try to beat this cancer, I do have days where the pain and fatigue are getting to me.
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Thank you cyathea!! Sorry your path was a mixture of good and bad but women are continuing to thrive with your kind of report!! Keep rockin, sister!!
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Cyathea, hoping and praying you feel better soon! I am having a lot of pain and discomfort post surgery...feeels heavy and painful when I move around...I also feel a lot of pain on the arm side where lymph nodes removed...if I straighten the arm...feels like nerve pain in several spots??? I am not sure just trying to take this day by day...I will have a telehealth call on Thursday for the pathology report, praying for good results 🙏❤️Keeping you all in my thoughts and prayers, please stay safe🙏❤️
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Maryjv, I’m praying you get a good report tomorrow. Although I don’t wish this nerve pain on anyone, it is a comfort that I am not the only one and that we’ll get through this together.
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Cyathea-thank you! My SO actually video conferenced me today because I have some hard knots-he days it’s normal and to give my body time to heal, also told me the pathology came back all clear!!! Chemo did it’s job, such amazing news!!!
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Yes sleep is elusive. I was diagnosed in Feb 2020; had the biopsy, lumpectomy and now hormonal therapy because the radiation is on hold due to the COVID 19. I have not slept since the first week in Feb. I take benadryl but it may or may not work.
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I have hard knots under my arm where they took out the nodes; I had a seroma after surgery and the surgeon took out some fluid but now the knots are driving me crazy. They hurt and I have been trying to exercise and get my arm back in shape. I have not said much to my doctors because they want to do phone medicine which is unsatisfying.
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Maryjv, that is wonderful news! I’m celebrating with you. Sorry that you and Darlene63 are dealing with hard knots.
Rather than knots, both my underarms feel hot, numb and that “pins and needles” feeling. It’s like I have sponges under my arms. I’m not sure if this is from swelling or that this is just what fat tissue feels like when it is numb.
Have you ever burned yourself with a curling iron and felt the burn all day long? That’s what my underarms, inner arms and back feels like.
The Gabapentin that they gave me for the nerve damage makes me drowsy. I think it is also making me feel a bit “down in the dumps”. I keep wondering if I will ever feel normal again. It’s been three weeks since surgery. Before surgery, I had thought that I would be feeling pretty good by now and getting back to my long work days.
I am still working on my laptop from home, but my stamina, mental clarity and focus are not what they used to be. This makes me sad. I love my work. Helping my clients is what gives my life purpose. Being behind in getting their projects completed is stressing me out
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cynthea - I had my axillary lymph nodes removed on my right side 9 years ago. I remember that tingling “pins and needles” feeling. It was creepy. My husband helped massage the area while I rested my arm on his shoulder and that helped a bit. I also did tons of stretching to stop any cording.
In the end, I do have numbness in the area as not all the nerve tissue regenerated. But honestly, I don’t really notice it and there is zero tingling. I really just think that feeling is related to the nerve endings healing so don’t fret over that. It definitely is nothing I experienced for very long. So let your body heal, be kind to yourself and remember you just had major MAJOR surgery (which is why your stamina/mental clarit is still low) and it will just take time to return to a “normal” feeling. You will get there but only with healing time and patience. Hang in there!
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oh ladies!! Surgery was two weeks ago and feel like the pain is getting worse!!! My chest feels very tight and then the hard knots (above both drain sites) are very large and painful 😣 wishing I could move and sleep on my sides but no!!! I feel your pain Darlene!! Also my right arm prob has cording or nerve damage because I can not straighten out completely within feeling a pain running down the entire arm!!! Very very painful, and I forgot to ask my doctor on my phone visit 🤦🏽♀️ Def don’t like the telehealth calls!! Not the same
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Hello everyone!
I had my mastectomy and eleven lymph nodes removed March 13th. I was given a nerve block, in addition to anesthesia, my surgery was early in the day, and I was sent home that afternoon!
Was great to be back home. Like a quick trip out, then back. The nerve block lasted about two days and was wonderful. But after that, I was getting no sleep from the pain and the drains. Was given gabapentine and that helped, then I found some tramadol and that has really helped.
The tylenol and ibuprofen didn't do much for me.
I, too, have the burning sensation underneath my upper arm. I've found if I rub the skin all around it - the skin that does not hurt/burn - it has helped. I think maybe the increased blood circulation might be it, but not sure. At least I can now let my arm rest against my side. It was as bad as the incisions and drains.
I feel I turned a corner about two days ago. I am doing home PT because of the virus. Not having to do chemo, thank heavens.
Hope everyone feels better today.
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Cyathea, It’s been 5 weeks since my lumpectomy and sentinel lymph node surgery. I finally feel better. I had 4 weeks of PT(1 to 2 times a week) and did the exercises and stretching even though it was very painful. With very careful stretching I could actually feel the scar tissues breaking off from whatever they were attached to, whether nerve or lymph vessels, who knows.. It took daily painful stretching to get here though. Without PT I would’ve not survived the pain. I have low tolerance to pain I am learning. Sigh..
I’m also finding that once 6pm hits my armpit and surrounding area gets swollen and uncomfortable. I end up massaging the lymph fluids away from the surgery sites which relieves it a bit. I was told the numbness will take a long time to go away, kinda like how after my 3 C-sections I still am numb around the incision.
I’ve started radiation this week and maybe it’s psychological but I am feeling a bit more tired. Everyone at the cancer center says I shouldn’t feel tired yet, lol. I guess the worse is coming later? I hope it won’t be too bad.
Living with the pain for the last 4-5 weeks was really difficult. I’m now thankful for the simple things like being able to chop and cook for the family, being able to shampoo and brush my hair, getting dressed, and most of all just being able to lay down and sleeping through the night without waking up from pain. Anyone who’s going through it right now.. it WILL get better! Hang in there everyone
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Lovetoberestored I’m so glad you are feeling better from the surgery. I can definitely relate to being tired. Who knows what the ultimate cause is when our bodies have been through so much? Hugs and best wishes that your radiation treatments will be successful. I’ll be having them later in the month.
Maryjv and abc54321, I hope your pain has eased even more now that more time has passed. My burning has definitely gotten better but it is still with me on my left side. Thanks for sharing my pain.
OnlyGirlof5, sage and AngieB92, how are you doing with TEs and your reconstruction? sage, thanks for the encouragement that the burning and nerve damage does get better with time. Darlene63, how are you doing now? 2girlz1boy and pjb61, are you back to 100%?
My low grade fever persisted after my Kadcyla treatment so I went to an urgent care last week and found out that I had an infection in my surgery wound. It was just a small opening under my right arm. Several doctors had looked at the wound and thought that it was fine. I had been treating it with Bacitracin ointment. The type of bacteria that was causing the infection was definitely the result of surgery and not something you get at home. An antibiotic should take care of that and I should be healthy again for my second Kadcyla treatment on Thursday.
It has been over 6 weeks since I had my BMX. I had hoped that I would be fully healed in half this time. Others had warned me that it was going to be a long process, but I had hoped that I would not follow in their footsteps. Living with pain is exhausting. I stopped taking Gabapetin due to the SEs. I'm taking a normal dose of Ibuprofen to help with pain and swelling now (down from very high dosage).
I have a wonderful therapist that is treating the cording in my left arm and massaging to reduce the swelling under my arms. Due to feeling so bad after chemo and with the infection, I missed a few appointments but now I’m seeing her twice a week and it is really helping.
My scars are looking pretty good now. I’m starting to use silicon tape to make them look better. I’m able to sleep on my stomach again. (Yay!) I have excellent range of motion and will continue to work on my PT through radiation to try to prevent lymphadema.
My next step is to buy prosthetics. With everything being closed, I have not been out of my home much and I’m fine with being flat at home. Has anyone done this already?
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cyathea - good to hear from you and glad you got some answers on your fever! I had my second Kadcyla Friday and made myself busy Friday night and Saturday to ward off the muscle and joint aches and it seems to be working!
My TEs are filled to where I want them to be. I didn't want to be as big as I was before (D cup) so what I have now is perfect. My exchange surgery is scheduled for July 2. I'm excited. I'm a side sleeper and cannot sleep like I used to with these TEs.
I hope everyone is doing well with having to go in to the clinic visits alone. When I was waiting on my Kadcyla a woman was talking to another woman and started crying. The isolation she was feeling due to the pandemic in addition to finding that the cancer was still there after her CT just broke her. I don't even know that she had breast cancer. Several of the people around her stepped up to offer her encouragement - I offered my secret stash of tissues with lotion - and we all talked it out. That was so profound to me. Bottom line is no one can understand what we go through except the rest of us. This is our way of taking care of each other.
So far, tamoxifen and Kadcyla have been kind to me. I hope it stays that way and I hope you all are doing well and at least able to relax and smile during these tough days
You mentioning prosthetics made me think of my grandmother. She had a single mastectomy and was fitted for prosthetic bras. They looked amazing!! Later in life, as dementia took more control over her, her prosthetic bra was her favorite place to hide her dentures!
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AngieB92, I love that tidbit about your grandmother. Maybe I’ll find something useful for those bra pockets as well. 🤣
Thanks for the encouragement on keeping moving. Now that I’m feeling a bit better, I’ve started doing some low impact exercises. I know these are good for me, but I need all the encouragement that I can find to keep doing them consistently. I hate having sore muscles. I guess these are the penance I must pay for being a couch potato this past year
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Hi There,
What brand of silicon or scar gel are you using? I am shopping around for the most effective right now. Any suggestions
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