May 2018 Surgery Support Group
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Congratulations eo2378, sounds like a success!
Readyabout, Im sorry your recovery has been so riddled with troubles. My thought are with you as you traverse these obstacles...
Hoping our collective recoveries offer us minimal pain as we forge on post-op...
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- Kelligirl5 - that is so encouraging to read about all the caring professionals on your team and that your summer trip is still on schedule! Praying radiation is quick and a distant memory very soon!
- ReadyAbout - thank you for the video link on exercises. It is slow going. MO left msg yesterday to set up 1st appt, but I haven't returned the call. Wondering how much of an option it is to turn down hormone therapy. I have not had the neuropathy pain at this point, but I have seen it mentioned throughout the boards pretty regularly. I seem to recall a couple of products that people were using for relief including Vagasil on the chest! 😮
- Sn75 - How is today going?
- Eo2378 - Congrats on getting the surgery behind you!!!!
- TriplePHtown - bummer on the drains 🙁 Hopefully Monday will be the magic day!
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Ughhh these last two drains are really annoying today!!!! They better be coming out Tuesday! Now I’m stressing the incisions are going to start healing around the tubing and it’s not going to be fun coming out!!!
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SLL: FWIW, a friend of mine had several drains in for 5 and 1/2 weeks. FIVE. She simply could not get below the 30ml mark and finally marched into the PS office and demanded that they be removed. She didn't have any problems with drain removal after all that time so you should be fine. Deep breaths....
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Hello all! I hope you all are doing well and healing nicely. I am 3 weeks post-op as of yesterday. I’m feeling pretty good although my left side (cancer & SNB side) is still quite tender. I sometimes feel like I have a sunburn under my arms on both sides and my skin across my chest feels irritated all the time. Anybody else have this that can offer solutions? The expanders are still a pain but I know they’re hear to stay for the next several months at least. I start my fills next week and will start chemo in a few weeks. I will have 8 rounds of chemo and then get to look forward to my exchange surgery and hopefully the end of this journey!!
Stay strong my fellow warriors!! We are stronger than cancer!!!
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Ready- phew!! Glad to hear she had no issues! But 5.5 weeks ughhhh!!
Joy- I’m only 11 days post BMX and my left arm pit feels like it has a sunburn for sure. It is definitely more tender than any other part of me that was affected by this surgery (other than these stupid drains sights as of today!) wish I had some help or remedies for the discomfort
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My drain removal keeps getting postponed too. I am 2 week’s post surgery today. Was scheduled for the last drain to come out. But my ps was tied up in surgery all day, so it’s been postponed for the 3rd time, to Monday at 5pm!!
How long did you all wear the Velcro wrap thinking? I am dying to ditch it. But don’t know if we are supposed to wear it for support?
SPDgirl; I want to turn down all the therapy. I just wonder how necessary it all is. I mean we had surgery and cut the cancer out. Now I just want to move on. My mother had breast cancer 10 years ago. She tried the hormones, but couldn’t take the side effects. She stopped taking them after only a few months.
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Joy- that’s my biggest challenge right now: the sunburn feeling/hypersensitivity in armpits, sides, chest, etc. I am 2.5 weeks post bmx. I talked to the surgeon today and he said it’s not uncommon. He said there are 4 to 6 nerves that are cut on each side of the breast so there’s going to be nerve pain. I told him I’m wary of staying on Percocet (although I’m resentful of the media for making me scared to take pain pills when I’m in actual pain). He said to try 800 mg of Advil three times a day and see how that goes. He recommended that I only do that heavy dosage for about five days but it should get me over the hump of this pain. I am still going to take a Percocet first thing in the morning for several more days because everything hurts. I’m waking up most nights at 2 or 3 and taking Advil. I have always had a high pain threshold (I went to gym day after lumpectomy) so this kind of pain has been an unwelcome surprise. Getting into really soft pajamas early in the evening has been a huge help.
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ReadyAbout: I am having the same type of sensations. I was off pain meds for a day or so, but am back on them now. The muscle relaxers are what I mostly take, but am also taking my ocycodone, especially at night. You have TE? I am assuming that’s why I am still having muscle contractions.
It will get better! Hang in there
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FaithsMama: Yes, I've got tissue expanders - they are gross but I'm trying to be kind to them. I also have some funky autoimmune issues and I think that must be part of my hypersensitivity. I feel really good in the morning because I take a Percocet. I went to spin class this morning and my spin teacher was surprised to see me there and I was like, "Yeah, but I'll be in pajamas by 4 this afternoon and curled up in a fetal position." I feel absolutely terrible later in the day although the Advil helps somewhat.
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FaithsMama - I am so sorry to hear that drains had to be postponed again! That is frustrating
I have never had a velcro wrap. I had a tight ace bandage for hospital stay which was removed when i was released and then i had a lot of dressings and tape for the 1st week. Those were taken off by my surgeon's nurse when the pain bulbs came out and i have had nothing since. I understand on the hormonal therapy. I am really going to have to be convinced if that is the right course for me as there are so many potential issues with struggles I already have. ReadyAbout - I took 800 mg motrin for the 1st week and now have been doing 600 a couple times a day which I seem to tolerate well, but the surgeon has been concerned it is too much ibuprofen. She even said she would be more comfortable with me taking a small amount of the narcotic (Tramadol) instead, but I haven't had to take any narcotics so far and don't think I want to introduce them now. I was not given any muscle relaxers like FaithsMama mentioned. Were you? The surgeon is thinking that the unbearable tightness I am having is a type of pain that I am recognizing differently.
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ReadyAbout, wow, spin class! That’s impressive! My plastic surgeon told me not to go to the gym for 6 weeks,though. I am only doing the arm exercises, walking and elliptical. Be careful!
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Ladies, it will get better. I had the same pain you are describing under the arms and across my chest. It helped to put two small pillows under each armpit. It relieved that area of pressure and additional irritation of my arm rubbing against the tender areas. I had serious pain at my drainage sites under each breast/armpit. I couldn’t do anything about that pain until the drains came out. That area was as hard as a rock.
I was taking Oxycodone which did not touch the pain. I alternated between 800 mg of Ibuprofen and extra strength Tylenol. It didn’t give me much relief either. Once I went without meds so I could have a half a glass of wine at dinner. To my surprise I had some relief. I am not advocating alcohol but at a moment when I was so miserable with unrelenting pain I got some relief.
Some women say they turned the corner at week 3...for me it was week 5. Pain relief is coming...hang in there!
Praying you move thru this season of pain quickly
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10 days out from bmx, no reconstruction. I don't really need the Norco any more and am doing okay on Tylenol.
I have hard swollen lumps under my arms, with deep grooves from the elastic binder. Gental massage doesn't seem to help so I'm just leaving them alone.
I'm afraid to use cold or heat for pain relief on skin I can't feel, so I'm probably suffering more than I need to.
First actual shower today after getting by with sponge baths (yeah, I know. It's a long walk to the shower house because the one in the RV isn't much use for anything but storage, and I can't yet drive the golf cart). I'm hoping the moisture will help loosen the steri strips because they are tight and hard.
Follow up with BS is Monday. The cancer side drain has dwindled to about 15cc per day, still getting 25 to 30 from the non cancer side. Hopefully she'll remove both of them and give me an idea what to do with the hard swellings under my arms and on my chest.
The dark red bruising has mostly faded. I have some persistent orange-peel skin on the remains of both breasts which is sort of concerning at least to me. The skin on the most bruised part on the right side (cancer) isn't in good shape. I'm still hoping it's a reaction to the tegaderm.
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Anyone else have an incision vac over the MX breast incision? I guess my skin was very thin from years of weight and this vac is supposed help with wound healing and blood flow. Not sure if the excessive tightness is from the vac or the MX procedure itself? It feels like a giant suction cup on my chest, making basic movements somewhat challenging. I decreased my pain meds today to half the dose, and I'm thinking this could also be what's causing me to feel the additional tightness.
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Lasies who had nipple sparing mx....I had a NS BMX 13 days ago, and my nipples have been healing. They have had tiny little scabs and have started to fall off. Well this morning I woke up to find a small amount of blood on one of them, no pain or warmth so no infection, I’m assuming it’s all just the scabby skin falling off? And I guess I’ll take it as a good sign that there is definitely blood flow to the area!? I’ve been alternating between bacitracin and aquaphor on them too. I go to the dr on Tuesday so I’ll keep an eye on things and call if they get worse.
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FasterPussycat: I do not envy your shower situation! Good point on the heat/cold therapy. I too have wondered if anything would be helpful, but not sure what recommendations or restrictions are.
EO2378: I did not have incision vac, but i have incredible tightness that frustrates me a lot.
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Hi everyone! First time poster, but have been reading since diagnosis. Thank you all for sharing your stories, they have been very helpful. Now it's my turn.
I was diagnosed in March after my annual mammogram. It picked up something, I was called to have a follow up and ultra sound. Turns out what the saw on the mammogram was a cyst, but the ultra sound found the cancer. It was a whirlwind - meeting the surgeon, oncologist, etc I elected to have genetic testing (all negative). I read a couple of books (some mentioned on this forum), I found Radical Remission to be very helpful. I believe that a positive outlook is critical when facing serious health conditions. I also believe in advocating for yourself with medical professions - doctors do the best they can but they don't know everything. The surgery was scheduled and cancelled twice - once because I wanted to have the genetics test done, the other because my surgeon did it. I had not felt comfort or trust in this surgeon and opted for a second opinion. This surgeon was confident, not cocky, and I felt like it was the right decision.
I'm 9 days post op - not where I thought I would be. The surgery went well, nodes were clean. I was sent home that day (check in at 6:30, surgery at 1, left around 5), it was a long day. I had wires implanted with mamography (painful but not as bad as other posters experienced) and nuclear dye inserted (my lymphatic system runs fast - person before me took over 1.5 hours to finish and pushed the surgery schedule back). The following day, I had incredible body pain (legs, core, back) like I had been working out extremely hard. The pain lasted 2 days. I started to feel better after the first week, and then on Thursday, I decided to get up and walked around for several hours. I felt fine during my wanderings, but the pain came back hard that evening and my left breast got very swollen. It's now Sunday and the pain has gone down a little. I'm mad at myself for pushing too hard and setting my healing back several days. But oh well, seemed like a good idea at the time.
So, for those of you still healing, take it easy. I know there are those that will spring back and at the gym, others (like me) need a little more time.
To all of you on this journey, best of lucky to you. And please share your stories, they are helpful!
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I'm on day nine post-op. Drains are getting less - about 60 on each side in a day so I think it will be awhile before they are pulled. I have my first follow up with the oncologist and I'm hoping she has my pathology report. Fingers crossed they didn't find anything more. I also have my second visit with my PS. He mentioned last week he might give me my first fill. I have 150 ccs in there but is it common to put in more when my drains are still in? He mentioned last week he might pull the drains but he won't do that if I'm not under 20 ml right? I don't want them pulled too soon even though I hate them. The expanders don't feel great. Kinda like a vise around the chest. I'm staying quiet and resting a lot but getting a little stir crazy
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I'm 4 days post op and I feel like I'm starting to turn a corner. I'm feeling a little less tightness in my chest area, the soreness from the SNB is gradually improving, and my biggest accomplishment of the day is successfully pulling my pants up without any assistance after using the restroom!! I've been able to get by with a pain pill in the morning and one in the evening before bed. I was able to get a mile of walking in over two walks today. Everyday I find small things that remind me that I'm slowly walking the road of recovery.
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sn75: every PS is different, but the general rule seems to be 30ml per drain/day before they are removed. I've heard of some PS who want it below 20 ml, but 30 seems to be the standard. I had all drains removed at 2 weeks post-op, but I won't have my first fill until one month after surgery because my tissue wasn't healing well when I saw the PS and now his schedule is full. I don't know of any rules about drains and fills, but I'm sure someone here can weigh in. I have tissue expanders and I guess there are ccs in there but the PS never told me anything about it and my boobs remind me of 2 aluminum cans that have been partially crushed.
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SPDGirl - Thanks for the good wishes because one drain was removed today on Day10 post op.
Sn75 & ReadyAbout - my doctor also wants each drain below 30ml consistently for at least 2 days before taking out drains. She hopes the next one will be ready on Thursday. Today they replaced the air in my tissue expander with about 250 of fluid & will probably try to fill more in one week. A bit worried as I haven't received pathology report ye.
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- Madkitteh - congratulations on being on the other side of surgery! Wow, your surgery day was fast and furious!
- Eo2378 - 😁 congrats on your milestone. I am working on hanging up my towel and I keep asking myself why we put the hooks up so high
- TriplePHtown - that is great on a drain removal! Did the process bother you at all?
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6 days post OP. I fell better but I am still in some pain. BMX. I was super disappoint in the fact I had no morphine. Lol. I was really looking forward to it. However I got a Q bag. It is a little black beg that holds medicine that keeps the full breast area pain free. Not the arm pits. For arm pit pain I needed Oxycotin. But the doctor would only write a script for 30 pills. The pharmacy wou.ld only fill 28. State of Florida crack down on drug misuse. It is crazy as real pain is not addressed. But alas I ran out of pain meds Including Using the little black bag attached to me with tiny wires. Now it all down hill NOT. I have found that the pain In my arm pit area goes away if I drain my drains more often so I have doing it up,to 4 times a day.
I will see the BS tomorrow I am hoping things go well. I know they found something in my left node. Not looking forward to that news
Here's hoping everyone is on there way to mending.
In the long run my daughter has come over every day to help thank heaven for her. Hubby is completely overwhelmed. If it's just him I was missing my Med schedule and having to drain my own drains.
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I just caught this on the cbs evening news, very interesting and hopeful treatments!
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Long and technical. tldr: nodes clear, mucinous carcinoma about 11 x 8 mm. Good prognosis.
Followup with BS today. Drains removed (painless!), steristrips removed. Incisions still a bit goopy so the doc cleaned them up and covered with gauze to let them dry out. I'm back in an ace wrap for a couple of days.
As I suspected, about 2 to 3 square inches of skin on the right side (not part of the incisions at least) is dying due to poor circulation. Doc is confident it will be fine once the dead skin sloughs off in a few weeks. I can only imagine the complications if I'd opted for reconstruction instead of going flat.
Us old farts don't heal as well as you young squirts. My skin is very delicate and reacts angrily to anything it doesn't like. I have blistered skin around the edges of the tegaderm that I removed several days ago. Even the metallic trim on the effing pink ribbons I was using to wrangle the drains raised a line of blisters one sweaty night.
I already had to remove the bandaids over the drain holes from earlier today because the skin was burning. Same thing happened after the biopsies -- I rejected the bandaids bigtime.
Oddly, the most painful area of my chest is over my sternum. the rest is still swollen here and there, with a real mishmash of sensitivity and numbness. I could swear something was taking a pair of pliers to my non-existent nipples.
The doc very kindly gave me a copy of the path report: 3 sentinel nodes plus 1 axillary node removed, all clear. My breasts weighed 653 and 728 grams respectively or just over 3 pounds total, which I found slightly amusing.
Tumor was 11 x 8 mm microscopically, unifocal (good, only one -- this type is often multifocal in the same breast), mucinous carcinoma with sheets of neoplastic cells suspended in mucin. Tubule formation <5%, nuclear grade 2, mitotic count 6 figured in 10 hpf, no lymphovascular invasions, no microcalcifications.
TNM classification: pT1c, pN0, Mx
Stage: IA
Lymph nodes showed mild sinus histiocytosis, no atypia, no metastatic cells. I have some googling to do to see what those words mean lol.
Left breast had benign parenchyma with fibrocystic change and no significant nuclear atypia or ductal hypoplasia. No in situ or invasive carcinoma. Presumably the entire suspicious area of papilloma and sclerosing adenosis on the non-cancerous side was successfully mined during biopsy a month ago.
Next stop is the medical oncologist, who will probably want hormonal treatment as the tumor is ER/PR positive. No chemo needed as it's HER2 negative. No radiation required as all breast tissue was removed.
Mucinous carcinoma is a rare tumor type (1 to 3 %), and tends not to be as likely to spread as your standard invasive ductal carcinoma, which is good news. The combination of rarity and non-aggressive behaviour means it doesn't get studied much, though occasionally it does show up as stage IV.
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SPDGirl - Drain removal was fine and did not bother me. I did take pain meds an hour before so that may have helped.
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Thank you all for continuing to post “post-op" experiences; it's been interesting and helpful to read about our similar and different recoveries.
My drains came out 6 days after my bmx on 5/25. I was anticipating minimal pain and much reward once they were out, but no such luck! Maybe because they were ready so early... the areas were soooo tender, I jumped off the table when the NP just tried to snip the stitch! She then gave me lidocane to numb, and that pain was mind numbing -worse than any thing prior! The ultimate removal was then managable, however 4 days later & I'm still sore & not able to sleep any better.
Although I suppose I dont need the big pain meds, I could have used one prior to that procedure (i took an ativan to no avail), and I wonder if I still had any left, if I would be getting better sleep, but was only given 8 dilauted and took them 2x day for 2 days, then once at night for 4nights. Not even a weeks worth! At my drain removal no more meds were offerred, I reported the big pain was intermitent & I didn't want to appear drug seeking, so didn't ask. I realize there is much concern about addiction these days, so I’m thinking I was hesitant to ask for more to take at night to sleep (and I was out of it being freaked out by both the pain & from having a first look at my flat and currently lumpy & bumpy looking chest -I'm told the a smooth “flat look" I chose in lieu of reconstruction will ultimately appear) 😏
Still I’m toughing it out, and doing generally ok -feeling blessed to have a clear path report, but also know good solid sleep would help with my healing...hoping it comes soon!
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Marena, I am so sorry you are struggling with pain. I too had pain when my drains were removed, but I believe that is when the healing really begins.
Do not be shy about asking for meds. You just had your breast amputated! That is a huge surgery! I have Xanax, a very low dose. One 30 Day prescription would last me a whole year. I would only take it if I was experiencing a season of insomnia and then would only take a half pill. When I was diagnosed I started taking .5mg every night at bedtime. My anxiety levels were so high and when my head hit the pillow my mind was racing. The Xanax helped me get a good eight hours of uninterrupted sleep. I continued that dosage through to two months post op then have tapered off to half a pill .25g.
The pain relievers didn’t offer me any pain relief. The Xanax lowered the anxiety I had about the pain and let me drift off to sleep at night.
If the pain relievers helped you by all means ask your surgeon for a prescription! Just because it wasn’t offered to you doesn’t mean he won’t give it to you. Experiencing pain that is affecting your ability to sleep is impeding your healing process.
Go to your surgeon, gynecologist, or PCP...you will get help.
Blessings!
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while I didn’t have any pain with the drain removal my chest is so tight and sore after my first 60 mL fill.. i’m taking Advil and trying to remind myself to keep my posture super straight since that seems to alleviate the pain. I was having major issues sleeping at night when I moved back to my bed and I found five MGs of melatonin has been a godsend. Not sure if anyone else has tried it and I’m told it doesn’t work on everyone, but it’s a more natural approach if you are worried about taking pain meds to sleep and I find that in combination with Advil knocks me right out.
Right now I am worried about how I’m going to handle all these fill ups, I’d like to get back to a small C cup but since I’m so tall in order to do that I am going to need to be near 700 CCs and right now I’m at 460 in each and my skin is so tight it seems unimaginable I have room to fit anything else.my exchange surgery is set for August 24th so I guess I have some time to try and stretch things out, but man, this isn’t fun feeling this tight.
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