May 2017 Surgery Group

sunnyjay

Fancynancy5: I'm about 10 days post surgery and still feeling lots of pain in the armpit area. I had my left UMX with SNB surgery on the 17th and was supposed to go home on the 18th. My BS called me just as I finished lunch and was preparing to go home. He told me that he got a call from pathology who was starting my path report and found some spread in one of the sentinel nodes. So I had to get the axillary nodes removed. Since I had just eaten (and had to be fasting for 8 hours) I had to wait until the following day (the 19th) to get this done.

I've been home since the 20th, and the pain under my left armpit hasn't left. I had one drain removed last Wed and the 2nd drain removed on Fri but the pain hasn't subsided. I also have numbness in the back of my arm, between my elbow and my armpit. I also have some pain & chest pressure from the tissue expander. None of the pain & numbness I"m feeling really goes away with the hydrocodone pain meds I was prescribed. I'm trying to wean myself from the pain meds by alternating with extra strength Tylenol and only taking the prescribed meds when I'm feeling extreme pain, usually in the evenings. I have a pretty high pain tolerance so this really sucks.

I guess the good news is that I'm slowly gaining range of motion in my left arm. I have medium length hair and have been able to put it up in a back ponytail using both arms yesterday. Prior to this, I could only manage a low side ponytail by bringing all my hair to the left side minimizing my left arm movement.

I have to yet receive my full path report but when I met with my surgeon last week he reported that the rest of the nodes were clear. Yay! However, he presented my case to the tumor board at my clinic and got a call from him on Friday, saying that the board unanimously decided that I would need to get chemo & possibly radiation afterwards. My oncologist (whom I have yet to meet) sits on this board, so we will discuss the details of my treatment when I meet with him in a couple of weeks.

Because I have crappy veins, I will have to get a mediport placed soon. And, because I will likely need radiation, I won't be able to exchange for implants for about a year. I meet with my PS tomorrow to start filling the expander so I anticipate more chest pain in my near future.

JuliaJazz

FancyNancy, I wish you were going to the doctor today.  Maybe you should call their office.  Pain is normal with an axillary dissection but it should get gradually better. I would definitely call the office and let them know what is going on.

Sunrisefish

Hi gals, I had my original cancer treatment in 2014. I had SNB and lumpectomy with 3.5 weeks of double dose of radiation back then. For those getting radiation , I found the process to be relatively easy and painless. I used Miaderm cream twice a day. You can find it on Amazon. My skin looked like it had a bad sunburn but never blistered and healed perfectly. I just had BMX on May 17th due to recurrence, with direct implants during mastectomy. My radiated skin looks perfect so far. I give credit to the Miaderm. The section under my arm where they took out nodes in 2014 has always been tender, not bad... but three years later I can still feel it. The pain gets better gals, hang in there. XO

MamaOz

Notverybrave,

We are all brave! Not by choice obviously..

Im not yet done this journey.. drains still in till Monday and my path report showed 3 of the 29 nodes removed on my right tumor side were positive so I will be facing radiation and hormone therapy I already did chemo

The dr was surprised to see the path on my left side which I opted to just remove as well, showed the beginning of a tiny tumor .that the mri or pet scan failed to reveal....scary. so its a good thing i had the BMX

My right underarm is still numb and its very uncomfortable trying to raise my arm have had a peek looking down yesterday when dr opened the wrappings .. definately flat.. havent seen a front mirror view yet..

But just praying all these treatments do the job for us all

Mamaoz

NotVeryBrave

MamaOz - Good call on the BMX! I had that fear since some of what they saw on the initial MRI was gone on the repeat post chemo. No one could say if it was because of lack of hormones (chemopause) or from the chemo itself. There was still one spot that they wanted to follow in 6 months. No thanks. Ready to be off this ride!

We're all at increased risk already since we've had cancer. Some of what the path showed on the good breast was also an "increased risk" thing - sclerosing adenosis, I think.

I'm sorry about the positive nodes. I think that's good that it was only 3 out of 29, right? Maybe your PS could give you some safe exercises for your arm or send you to PT?

Good luck!

JillGalusha

Hi. I had stage 1 a breast cancer in the right breast. It was only 4mm. I decided to have a double mastectomy rather than a lumpectomy for personal reasons. 6 weeks after surgery I am having severe complications on the right side. This is what happened. April 14 mastectomy. About a week or two after the right side opened up at least 4-5 inches wide and about 1/2 in depth. There was one hole near the center and I don't know how deep it was. I panicked and went to plastic surgeon who said we see this all the time. Don't worry let it air out and it will heal from the inside out. I felt stupid panicking. week or two later woke up with blood all over my nightgown and sheets. Panicked again and saw plastic surgeon who said it was no big deal and he had seen this before and it would heal from the inside out. At this point he wanted me to pack it with moist gauze and cover it. Felt like a dumbass again. A week or two later I was standing in the bathroom when suddenly at least 1/4 to 1/2 cup of clear yellowish drainage came out all over me and pooled on the floor. Panicked again. Saw plastic surgeon and he said that was good and just continue packing it twice a day. I felt like a dumbass again. A week or two later I smelled this horrible smell and thought I needed to take the trash out but when I went to change the dressing I discovered it was my wound that stunk horribly. Panic again. Saw plastic surgeon who said I don't smell anything now. I REALLY felt like a dumbass. Why would I make up something like that? Anyway, he looked at the wound and at first said he would have to go back in and remove the expander because it was exposed. I freaked out. Then the massaged around the perimeter of the wound and suddenly a large amount of drainage spit out over him, me and the floor.He cleaned it up and changed his mind. He didn't think the expander needed to be be removed. Once again he said just pack it with saline soaked gauze and cover it. I never really saw what the wound looked like then.

When I got home I saw the wound had opened up all the way and I could see muscle tissue. Again keep packing it twice a day. It has now been six weeks since the surgery and I have a giant gaping deep wound and all I keep getting is pack it twice a day and it will heal from the inside out.

I am beginning to question my plastic surgeons judgement> My husband and I got into a fight over this. "Are you calling the Dr a liar? and do you think you know more than the doctor?"

Several years ago I had a lipoma removed and had to go to a wound care specialist for a couple of months. The treatment was brutal and painful but the wound did finally heal to a point where the doctor could suture it up. I found out that the rule of thumb is that if a wound does not heal on its own after a month the patient should see a wound specialist. If I just continue packing it twice a day I believe it could take at least 9 months to a year to heal on its own. THEN scar revision THEN heal again THEN begin filling expanders. It just doesn't make sense to me that it keeps getting worse but Im told to just let it heal from the inside out. In the meantime, I have resorted to using a female mini pad to absorb the drainage because the large open wound weeps all over my clothes.

Does this sound normal to you? Please be honest with me. Should I get a second opinion and go to a wound care specialist and piss of my plastic surgeon or accept that it might take 9 months to a year to heal on its own? I really need your advice. I want to move on with my life. Cant lift more than 5 lbs. Cant swim or fish or do many other day to day activities. Advise me on what I should do.

Herculesmulligan

Jill....no that does not sound normal to me. U need a second opinion. Did u have a general surgeon as well as a plastic surgeon? If so, I'd call her; otherwise, find a plastic surgeon who will see you soon. Do you have a fever? Does the wound look red?

Tpralph

jill I am a nurse practitioner. If u were my patient I would be referring you to a wound specialist. Also are you doing your own dressings? They should be done by a nurse trained in wound care and who can contact the wound care specialist as needed.

I'm sorry you are having a poor effect from surgery but this result is not normal and is not cimmin. Complications should not be more than 6 percent.

I hope you get the care you need and you can get your husband inboard. Not all Heath care practitioners are good and we r all human and make mistakes. Some more than others. So you are on the right track advocating for yourself!

NotVeryBrave

I agree. Get to a wound care center for evaluation. Or at least see someone besides your PS. This is NOT normal.

My SIL had major abdominal surgery in December and ended up with an infection along the incision line. They took out the staples and had home care nurses coming to pack it. Eventually it became my brother's job, but it only healed to a point. Then it seemed to get a little worse. Finally - in April - they went to wound care. With the help of a wound vac it was basically healed in like 10 days!

I'm so sorry this has been this hard!

Lordhelpmetoo

Hi ladies, I'm 7 days post BMX. Has post op yesterday with ps. Unfortunately the drains will stay until Monday. The pain has been very manegable. I only took about 10 norcos in 5 days. I think that the anticipation leading to BMX was nerve wrecking. But I honestly say that the worst part has been the drains

ready2bedone

Hi everyone, I had my double mastectomy a week ago today. I had my first follow up with the plastic surgeon yesterday and was disappointed that none of my draims came out. Hopefully next week.

My surgery went better than I expected. I didn't get sick from the anesthesia like I usually do, so that was a great bonus. I didn't have much pain, just a very uncomfortable squeezed feeling in my chest and the sharp stabbing pain when I move my arms in a way that pulls on the drains. Got released the next morning, so no complaints about that part.

But strangely, this morning, a week later, it has hit me hard and I am feeling pretty down. I'm feeling ugly and disgusting. I'm exhausted, a bit dizzy, and still a lot more sore than I thought I'd be. I hate asking for help for what seems like everything. I'm also super stressed about waiting for the pathology report and Oncotype DX score.

When did you start feeling better - both physically and emotionally?

Heidibird

You are not ugly or disgusting! You are a beautiful strong woman who just needs to lean on others for a while while recuperating. I had a UMX in November and if you think something looks....odd...then look at my chest. :-) My drains came out after 10 days and I certainly felt better then. However there was still soreness and some pain under the arm for several more weeks and all I could think was that someone had put a nail studded softball in my armpit. But as the days went by, that pain went away too. I knew that in order to take care of myself and heal well that I had to take it easy for a while. Your loved ones and friends will not mind helping you on this part of your journey as they know you would do the same for them. Look at the calendar and remember a step at a time, a day at a time. I will bet you notice a big difference in just one more week.

Blessings to you and hoping for great path and OncotypeDX scores!

~Heidi

JuliaJazz

Readytobedone, I agree you will feel a big difference in a week or two.  I am two weeks from my axillary lymph node dissection and a month from my BMX.  I feel great, just a little tightness in the chest and the underarm pain is almost gone too.  I got the last of my staples out today and got permission to go back in the pool for my water aerobics classes. Yeah!  I saw the oncologist today and learned that since my Mammaprint (a test of 70 genes) showed I was at high risk of recurrence, I will be having four chemo treatments, three weeks apart with a combination of Taxotere and Cytoxan. The first treatment will be June 23rd and the last will be toward the end of August.  I am so happy to be getting such good care.  My 5-year rate of survival with pills alone would be 75% and with the chemo it goes up to 88% so that is definitely worth doing. Hang in there all you other strong women, we can do this.

Herculesmulligan

ready2bedone........hang in there!! Your black mood will pass, and your pain will get better, and slowly you'll start doing all the things that people are helping you with now. And it will feel great. This is just an awful e xperience that you have to gut through. You don't have to enjoy it; you just have to survive it.

Lordhelpmetoo

readytonedone,

You and I had same surgery same date. I also had apppintment yesterday and drains will be put till Monday. My drainage has cleared a bit but hasn't turned clear or yellow yet.

Lordhelpmetoo

Julia jazz, I also had 4 treatments of TC. No radiation because of BMX. Feel free to pm me if you have questions in regards to chemo. You'll do fine. Make sure you drink lots of water to stay hydrated when you start

ready2bedone

Thanks so much for the encouragement ladies and letting me vent. I was feeling pretty guilty about having a pity party when I know others go through so much worse. I took a much needed nap and called an old friend who made me laugh.

Lordhelpmetoo - the drains on my left side, the one with the cancer and the SNB, has been mostly thin blood but the right side has been mostly a clear yellow with only a little tinge of blood. Does that mean that side is almost done draining? Three of my 4 drains have been in the 20s for the past few days. I don't see the PS again until Wednesday but am definitely hoping I can get at least some out then. That would most certainly help.

NotVeryBrave

ready2bedone - My heart breaks for you. I had a few really bad days about a week and a half after my surgery. I was so unhappy about how I looked and felt - just really down and depressed and exhausted. I found myself wondering if I had made a huge mistake with the choice of surgery and missing my breasts. Just everything was upsetting. I cried a lot for a couple of days. But it does get better!

I only had the drains for 6 days and they were a drag. Definitely felt better without them, but ... I have a small area (actually a couple) of fluid. The PS has tried on 2 occasions to remove it with a needle and syringe - no go. So we wait for my body to take care of it.

I started to feel a lot better physically after about 2 weeks. That constant pressure and tightness feeling is much less now. The achy, bruised feeling is only at times. The underarms still hurt some - feels like razor burn almost. And my sides hurt - worse if touched. PS says due to tissue being removed. Muscles and connective tissue now without cushioning.

But I'm moving so much better and only take ES Tylenol once or twice a day. PT is helping me regain motion. I can tilt to the side to sleep so my back thanks me. Driving is easier now. Everything is.

And how I look is improved. I don't love it by any means. But just having the swelling and bruising pretty much gone is a huge difference. I keep hearing that it takes weeks to months for things to settle. And it's not like I'm wanting any more surgery any time soon.

I hope you get good news on your pathology report. Be kind to yourself. Allow yourself to be sad, angry, frustrated - whatever. At least the surgery part is behind you!

MamaOz

Not very brave

yes she will have me see a pt with lymph specialty

My underarm is well i guess numb but its so sensitive to touch drains still in till monday

Does anyone know how yo update our statusl i added surgery on my profile but its not showing when i post

MamaOz

hello girls, well my post BMX surgery path report was a bit dissspointing and surprised the drs

In case i didn't mention before I had had silicone implants in for years and planned to have removed , it was the PS that discovered the tumor and got my ball rolling in Dec

So back to current after finishing chemo drs could no longer feel tumor and nodes appeared a little smaller on MRI but after surgery path report showed tumor still 3 cm and positive apparently had taken refuge infiltrating the implant! And 3 of the 29 nodes removed were still positive. So they all agree radiation a must with arimidex pills for 5 years. But another surprise was a tiny tumor starting in left breast that was as yet undetectable to scans. So i made the right choice I also have opted for no recon .. so as long as I keep these buggers from travelling elsewhere Im ok with it all

I still have my drains in till monday which will be 16 days im looking forward to that. The little pleasures. Geez so looking like rads starting in july so my journey continues

ready2bedone

Thanks NotVeryBrave! I am having a better day today. I went out briefly with hubby and that helped me feel a little better. I've been keeping my elbows pinned to my sides too so haven't had as much pain from the drains. I still forget every now and then - and ouch!

Got my pathology report too finally. Good news that my sentinel nodes were negative and no cancer in my right breast. I am so relieved! A bit of a puzzle about a missing intramammary node that I shared about on a different post. Bottom line is they still don't know about treatment.

But, I'm not going to stress about that this weekend. I'm planning to relax and enjoy the good news.

MamaOz

ready to be done

That is good news for you! My path wasnt so great as yo can see on a post from yesterday.. but I am trying to remain positive and will follow thru with radiation etc

My drains are in till monday that wiil be 16 days.. so I am looking forward to that but I too sm ready to be done with all this and live my life as fully as I ca

ready2bedone

MamaOz - so sorry about the pathology report not being good. It must be very frustrating but you have a great attitude! I am sure getting the drains out will be a huge relief and at least be one less thing to deal with.

DizzyGirl

Hello everyone! I have been reading through the thread trying to get caught up. I am experiencing some of the same things. I had double mastectomy with 3 lymph nodes removed and expanders placed on may18. My bs filled both about 240 at the time of surgery and I have had 2 fills of 60 since. I am surprised on much this process hurts. I am also having so slow healing at the incision junction. I am worried but so far bs says it is common. Path report came back with good news (the chemo did its job). I had to have a blood transfusion about a week after surgery. Hemoglobin was low. Down to 1 drain from 3. This last one is still putting out 50 a day and I can't understand why.

I have already been through chemo so next is radiation. They want to start that in just a few weeks. I'm not sure I will be healed up by then. I'm feeling pressured to get more filled than I think I can handle so I can start radiation. TEs are painful at times.

Lordhelpmetoo

I had my 2 drains removed today. Ps will start fills next Monday. I'm so happy they're out

Tpralph

lordhelpmetoo why did they give u chemo?

NotVeryBrave

Good to hear from you, DizzyGirl! Yay for drains coming out!

Lordhelpmetoo

Tralph, my onco score was 20. MO said to prevent distant recurrence plus my age. It was a very difficult decision to make. But I wanted to know that I did everything

ready2bedone

Hi folks - anyone here have "red breast syndrome"? I had surgery almost two weeks ago and for the past 3 days, the lower half of both breasts are red and warm to the touch. No fever. I called my doc, and she said it was probably red breast syndrome - a reaction to the alloderm, or the tissue just trying to incorporate into my own so increased blood supply to the area. Makes sense, I guess. I will see them tomorrow. I did ask if I could put ice on them and got a big NO!! Apparently ice or heat at this stage can make the new tissue die! Glad I asked.

Lordhelpmetoo

Tpralph,are you able to sleep on your sides now? I attempted last night and I still couldn't. It was too uncomfortable