March 2017 Surgery

2FUN

wallan, I'm glad your employer is not taking advantage of you. The next time someone from work calls slap yourself upside the head for me! (Totally sarcastic! LOL )

Bluebirdgirl

Hi, everyone, I'm tired and skimming all the new posts, will try to catch up in the morning. I saw PS today. He thought my infection was mild and that it looked good, They removed the tape and now I have a nonstick bandage on leftie, some bacitracin on incision, and see him again Thursday. I'm feeling much better! Raven, sounds like you are doing better too, that's good news. Sorry to hear elphaba is still around 😕 . Good night

MariH

Bummer, bummer, bummer. BS called this morning to let me know that margins still not clear of DCIS after re-excision. Next step recommended is mastectomy with immediate reconstruction. Meeting with PS tomorrow. And scheduled 2nd opinion meeting on Thurs.

My questions are since there is no invasive cancer in the re-excision tissue, is it possible that AI and/or RADS would be sufficient for DCIS grade low to intermediate? If I do have Mx, can they do implants over pecs? They believe that my skin is fine and possibly my nipple as well. I just would like to minimize potential complications. My personal opinion has always been that quality of life is underestimated in importance for healing.

:-

LisbethS

Mari, I'm so sorry about your bad news. That sucks! I know implants over pecs is becoming more common these days--I think they're recognizing the benefits, but don't know what the criteria is. Is your second opinion with a PS? Because I know that sometimes the PS has a preference for under pecs regardless of what the patient wants, so a second opinion from a PS would be good. I know my PS mostly does under the pecs. And I would definitely question them about an AI or rads instead of an MX, but I'd ask an MO not a surgeon. Some of my doctors have been great, but some of them I feel like i'm just a big dollar sign to them.

Bluebird, so happy you're feeling better!

Wallan, I agree with your hubbie, screen your calls. Then it puts the ball in their court to complain (if they have the nerve to) rather than you having to complain to get them to stop.

Raven, glad the abx seems to be helping, hope cultures come back with good news.

Regarding Elphaba, you should do what I did w/my first MX drains. I was going to my BS to get my low output drain removed but keeping my high output drain. I taped bags over my drains for my shower then when cutting the tape, I cut right through the tube & of course it was my drain I was supposed to keep. I swear it was by mistake, but maybe a Freudian slip? haha. But then I had a few seromas on that side afterwards, so not a good goof for me. Though the look on my BS's face when I told her what I did--priceless, I still crack up when I picture her face. Maybe you could have a "Freudian slip" with your Elphaba? LOL!

I don't know Scottie, I'm 4 weeks post op and it still hurts a lot. But my pain is hardly at all with movement though unless I bend over for too long, so it wouldn't hurt to ask PS if your continued pain is to be expected. My pain is worse in the morning, gets better as morning goes by but by afternoon starts getting bad and continues escalating, especially since my drains were removed.

Do those of you with TEs feel hard lumps, because I have all these weird lumps and after 10 months of checking my remaining breast for lumps, it keeps freaking me out. There's this lump on the inside of my right foob that sticks out but when I push on it, it pops back in. Is this what those of you with TEs experience? And my left TE seems to be more in my armpit than foob area. I know these aren't cancers, but are the hard lumps the TE? I would think since my TEs are under my muscles, I wouldn't be feeling all these lumps.

Healing thoughts to everyone!

Bluebirdgirl

Lisbeth, I experienced the same thing with my TEs. They were hard and lumpy. PS explained that unless they are filled to capacity they can "fold" (not sure that is right word) and feel lumpy. I ran to his office when I felt a hard lump on inner corner of breast. I thought it was something gone horribly wrong, I was putting heat compresses on it lol. But it's perfectly normal with TEs. I'm so happy to have my soft squishes now lol! I also had a dog ear on right side where the cancer had been. It's still there but not near as bad as it was, 50% reduction. Looks fine in a bra. Good luck with the TEs, they are a pain but won't last forever 😉 Hugs

Marie, sorry to hear about your margins! I hope you can get over the pecs if that is what you decide to do! Good luck to you.

We have all been through so much, it's the small victories we celebrate!! Here's to victories, big and small, to everyone! 🍻 ❤️

wallan

Hi Mari:

Sorry to hear about your small margins. For what it is worth, the first time I had BC, this happened to me and I ended up having a mastectomy. The DCIS and LCIS was more extensive than they first thought and I did have more invasive ILC too that did not show up on imaging. They found this after the mastectomy. Of course, this was 13 years ago, and I had only had a screening mammogram and ultrasound which showed a cyst before surgery. No MRI back then or not even diagnostic mammogram.

Having said that though, a friend of mine has stage 2 IDC right now and she had a lumpectomy and had small margins (DCIS in the margins) and is just getting radiation and AI to manage it.

Good luck to you.

wallan

Molly50

Mari, do you have a MO yet? Ask for a consult with an RO first if you don't want more surgery. I had to have a mx after lx due to extensive lvi which was all DCIS. I still had to have radiation even after mastectomy because of two positive nodes. You have time to make an informed decision including meeting with PS.

You can tell if the lumps are the TE if it pops back once you press on it. I was convinced that I had a lump under my arm but it was the TE. The implants are so much better.

Scottiemom11

Mari, definitely concur on seeing MO and maybe RO as well before you decide. Sorry you are having to deal with this. I also had only a small ILC on right and one spot of LCIS diagnosed via biopsies and MRI pre-BMx. I made the decision to have that surgery rather than lumpectomy. Results from BMx showed LCIS in all four quadrants in both breasts. Clean margins so no Rads.

Raven, fingers crossed that Elphaba goes soon.

So PS had me come in today. He told me to take the muscle relaxer soon and changed pain meds. He said I can start doing the wall crawl and shoulder rolls. Hoping pain will go away.

On the brightside. . .PS took off all the surgical tape and I'm very happy with how the new scars turned out. Skin work looks good and the scars will fade nicely.

Scottie

Sitti

Hi everybody, I'm having a hard time keeping up with all the posts. So sorry to hear about the set backs and infections, hope those dealing with infections will see improvement quickly. MariH sorry about your margins not being clear, seems like some of the advice offered will help you formulate some good questions for your medical team. My drains came out about 10 days after surgery. I noticed that my right breast, even though there wasn't much in the drain, had some fluid on the bottom half. I've had to have it aspirated (?) a couple times already and it seems to be getting larger again........... I saw where some of you have dealt with seromas. Was there anything you are aware of that helped them to absorb/quit draining or does it just take time. I went in yesterday and they mentioned sometimes having to put drain back in. I'd love to avoid that.

Dafne

Hi there sisters,

it's been hard to keep up with all the new messages and updates but i wish you are all getting better day by day; me on the other hand, cant say i m on my best of times.

It's two weeks, 16 days to be exact since my bmx with sln biopsy and tissue expanders placement and 8 days that i'm back at home.

I stayed at the hospital for 8 days, till the all the 4 drains were removed. It might seem quite early, but they were not giving more than 30 cc per 24h, so the doc removed them one by one.

What seemed strange to me though is that they were cutting the pain meds pretty soon, they started reducing them whille I was still at the hospital, so the last couple of days I was there, I was on Apotel through IV and then a couple of Depon pills 3 times a day (Both meds are European ones, similar to Tylenol and Brufen). Talked with a friend who had tammy surgery and she mentioned the same thing, that they cut down her meds pretty soon and her doctor refused to presribe anything stronger.

Also, a couple of days ago I had my first filling of 100 ml, plus the 120mls that were put in at the time of the surgery, i'm on 220 ml total. You can barely see the outline of breasts forming and they are really high, almost under my collarbone. BUT this is NOT my issue right now, PAIN is.

So, here I am, experiencing the notorius "iron bra" feeling I used to read about, dear God, now I know what all these ladies before me meant. It's like i'm wearing a bra 3 sizes smaller or like a really tight armor, I cant bent over, or lean back, can't sleep on my sides, cant even breath deep enough. It even hurts while i'm walking! Whith each step i feel my chest muscle squeeze and getting tight. At first, while i was still at the hospital i thought the feeling was due to the tight bandages, but now i know thats not the case. Plus, my PS did not prescribed any medication, he told me i should be ok with a couple of brufen.

When I told him I wasn't, he said the tight feeling and the pain was due to the pectoralis muscle, but he did not want to give me any valium or other med. He told me its gonna get worse during the expansion process and to bear it out or I could end up depended on the meds! Dear Lord, I could punch him on the face for having the guts telling me to bear it out!

So, should I tolerate this dreadful pain for at least half more year? In the hopes of it might go away with the implants? And if it won't?

Whatever happened to the quality of my life? I feel incapacitated, and I just cant imagine living like this.

And yes, I KNOW i should be greatful the cancer is gone and my lymph nodes were clear, but somehow I find it hard to feel greatful and happy when I'm in constant pain 24/7.

I went to the pharmacist and asked for muscle relaxers which i m taking in the evenings when pain gets worse so i can get some sleep, but the man told me not to use them more than a month. What can I do?

Sorry for the rant but somehow i feal cheated. If somebody had told me that I might need to endure non-stop pain and feeling worse than better, I might as well chose not to reconstruct. Not sure it worths the trouble...

LisbethS

Sitti, both my PS and BS told me in order to prevent fluid building up (seromas) after the drains are removed, to keep the area tightly wrapped with a compression bra or an ace bandage--you can buy them real long and 6" wide on Amazon and I'm sure other places if they didn't give you one at the hospital. If the area is compressed, then the fluid has no where to accumulate. They told me that too on my first MX but it was impossible to wrap because I still had my one big boob and then my flat MX area. On retrospect, I should have found a small hard pillow for my MX area and then wrapped with an ace bandage so I didn't have so many seromas. That's one of the main reasons I'm in a compression bra now is to prevent seromas, the other is my PS doesn't like me and wants to punish me, LOL! Luckily none of mine got infected.

It might be kind of hard to wrap once you already have one, but maybe it will keep it from growing. I'm surprised they didn't wrap it after they aspirated it. You might want to ask before wrapping it, maybe there's a reason they aren't wrapping yours.

Love and hugs to all and lots of healing thoughts to everyone!

LisbethS

Dafne, I am so sorry you are dealing with such pain and morons who don't want to make you comfortable. I don't know why the PS thinks the pain is mild and can be handled with tylenol and/or ibuprofen. I know there's a lot of issues with addiction, but it's ridiculous to have to suffer like that. Like Raven said, I think they should have to have similar surgery so they can understand the pain. I was thinking TEs for my PS in his testes then fill them 400cc and when he screams, tell him to take some tylenol for the pain because it's just mild pain he's experiencing! Haha, sorry if that's crude but how a male doctor thinks he can tell us what level of pain the surgery causes, is ridiculous.

There was someone on one of my groups who was given a new med that is related to Ultram (Tramadol) but much better for severe pain. It worked very well for her. It is non-addictive and not a narcotic so a doctor shouldn't have a problem prescribing it. But I don't know what the name of it was. I'll try to find what it was called although I know it will have a different name in Greece if they have it, but often meds get approved over there sooner than here. I know it was a stronger version or related to Ultram. I'll see if I can find the post.

Molly50

Dafne, I am so sorry. I can't believe that after a huge surgery you are not allowed pain meds. You might benefit from some physical therapy, it really helped me.

LisbethS

Dafne, I think this is the name of the medication that someone posted about that helped her so much. Nucynta (tapentadol)

Sitti

LisabethS, thank you, interesting how different PS's can be regarding after BMX procedures. My PS hasn't had me in any kind of bra and I've had no restrictions post-op whatsoever. Nothing has been mentioned about compression. Dafne, I'm so sorry you are dealing with so much pain. I wonder if anyone on the TE threads would have helpful insight on managing pain.

raven4mi

Scottie, sorry you're still having so many problems. It sure sounds like the chest wall muscles seizing up. Sorry if you've already said this but have they given you any muscle relaxants?

Wallan, I'm with your DH. Screen all calls.

Bluebirdgirl, so glad you're doing better! Whew! I was thinking of you so much, hoping and praying. Glad it's improving!

MariH, I'm so sorry you're faced with yet another decision. I have to admit I didn't know what AI was so had to go to the handy abbreviations guide! Sorry I can't speak to that but good luck through your decision making process. I can, however, speak to pre-pec implants and if you can find an experienced surgeon then highly recommend it. There is a pre-pec thread that I think I've linked to before here that has a growing list of surgeons across the country that are doing pre-pec implants. You might be able to find someone on that list in your area. Just search the forums for "pre-pec" and I'm sure you'll find it. The thread is called Te/implant over muscle can exercise and no ripples and the pinned post at the top has the entire list broken down by region. Lastly, I agree with the others – ask for recommendations from RO and MO if possible.

LisbethS, thanks for the "advice" on the drain but I had to laugh because I did break a drain once (latex gloves + rubber line + friction = broken drain tube) and my guy, being the hard-ass he is about them, simply put it back together and left it in!

Sittie, sorry you're dealing with Seromas now! That's the reason my PS is so against taking the drains out too soon. (I get that, of course, but I still hate them.)

Dafne, I'm so sorry you're dealing with so much pain. It's strange to me that they won't give you anything stronger than Tylenol or Ibuprofen. I agree, the medical community seems to place such a low priority on quality of life and often send the "Suck it up, Buttercup!" message instead of treating the individual patient. It's nonsense and no, I don't think you should "settle" for a life of pain. Is switching doctors a possibility for you?

As for me, the abx seem to be working and no more pain and I'm getting less tired now day by day. I went in yesterday for a 50g Vitamin C IV infusion, so hoping that will kill anything left that the abx may not be getting. The breast is no longer red but it's still dark and looks almost bruise-like but, again, still an improvement. At least things seem to be getting better while I'm patiently waiting for the culture results. Elphaba has been at 25 ccs the last two days; if it stays there again for a third day I'm going to see if I can get her removed tomorrow. I'm heading out of town to visit family for Easter and would love to not take her with me. I could use a damn break!

Scottiemom11

Dafne. . .sending you hugs and prayers. Any man who dares to question the pain we go through should have to experience have a body part cut off, reconstructed and expanded. Ask your PS or other doctor about Tramadol. That is what my PS switched me to yesterday do to continued pain from my latest surgery. He also upped the frequency of my muscle relxers at least short term. I wanted off the main pain meds and it's a good option. I have a high degree of nerve pain and was on pain meds from BMx with TEs for at least 6 weeks then still had to take something with the fills. I can imagine what your going through without even muscle relaxers.

Raven. . .so glad to hear that the ABx are working and praying you lose Elphaba tomorrow.

I am much better today with the change in meds. Now to start light arm stretching. Also, I have been dealing with LE for months and finally remembered that I needed to ramp up the green tea. Makes a huge difference in the swelling which has been increasing the pain. Fingers crossed I have finally turned a corner.

Wallen. . .I am only responding to funny texts from work. I've been where you are, having to answer questions while on family and surgery leave. Not this time. Screen your calls. Lol

Scottie

Molly50

Raven, I am so happy you are doing better. Prayers for removal of the beast before your trip. My incisions are suddenly looking fantastic. The scabbing is easing up, the tenderness is nearly gone. I think a couple more days of antibiotic ointment and I can start scar reducing measures. Scottie, I am so happy you are doing better! I have done some light stretching but not pushing anything until PS says I can have my life back.

wallan

Hey scottie: I wish I got funny texts from work. LOL. I am now screening calls.

I hope everyone is slowly getting better.

My pain has subsided even more now and as long as I do not do too much reaching up or carrying anything during the day, I feel more like myself, although I did go for a long walk yesterday and it wiped me out completely. So not completely back yet.

I do notice if I go shopping or do my sewing hobby or go am busy all day, my burning pain returns where my TE is placed. It has been 5 weeks today since surgery.

wallan

raven4mi

Molly, so glad you're incision is healing nicely for you finally!

Wallan, also glad that you seem to have gotten some control over the pain. It really makes you feel like a new person again, doesn't it? Good for you.

2FUN

wallen, glad you are feeling more like yourself. I am a seamstress also, and have not been able to wrap my head around sewing for a different body. Take it easy !

LisbethS

Molly glad you're incisions are looking better. I would be interested to find out what scar reducing measures you are doing. I think I read somewhere, coconut oil?

Raven, that cracked me up. Your PS really likes drains.

Wallan glad your pain is getting better. Sounds like your body is telling you to not rush it, you'll get there.

I noticed a lot of people getting fat grafting. What is that for? Since my PS seems to dislike me so much, I hope he doesn't skip any tweaks that would make my foobs look better.

Speaking of tweaks, is anyone getting tattoos?

Scottie, thanks for the tip about green tea, I didn't know it helped inflammation and I've been having a lot of joint pain lately so I'll try it. I must admit, I am terrible about eating healthy. I know what I should eat, I love reading about nutrition, and our fridge is full of organic veggies and fruits but I am just so tired and my husband has no interest in healthy food at all, and of course my kids naturally want nothing but sugar. I even bought a Vitamix, a juicer, and a One Pot that are all still sitting in their boxes. I live on chocolate milk and sometimes toast until my husband gets home and I eat whatever he gets me for dinner. I gotta get my act together with eating better if nothing else then to be a role model for my kids who have a 50/50 chance of inheriting my BRCA2 gene. I'm very motivated, just no energy. I get about a thimble full of energy a day and it all goes to my kids.

raven4mi

Lisbeth, FG can be used toward the end of the reconstruction process to smooth out any uneven textures. My PS likens it to spackling any imperfections out of a wall post-construction. (Ha!)

I had extensive FG back in October to repair damage from my first infection, so there are other reasons for it but the above is the most common.

Sitti

Molly50, glad your incisions are healing well. Raven, glad the abx is working, fingers crossed the drain comes out before your trip this weekend. Both of you have endured a long journey with all this, hopefully nothing but a smooth road ahead. Bluebirdgirl, glad your infection is better, hope you get a great report from your PS today. Scottiemom & Wallan glad your pain has been reduced, it just helps so much to feel more like yourself. 2Fun, sorry you had to deal with the flu on top of recovering.Hope you are on the mend. LisabethS, my PS recommended Biocoreum & Retamax at some point to help with scarring and healing. I am not sure when that should happen but just asked the nurse if they would prompt me at the appropiate time. Prayers for continued healing and hugs to everyone.

Scottiemom11

Molly. . .I would also like to learn more about scar reduction. My original ones faded nicely and are even. The new extended scars appear to be healing nicely as well. PS finally took off the tapes this week. I'm not terribly vain but was really happy before that I could wear a bikini top without my scars showing. I now have straight scars under my arms from the skin/pocket work and want to do what I can to fade them as they will show. I have to wear a swim shirt in the sun any way but I want to do what I can.

LisbethS. . .I have gotten great tips from the Tamoxifen and LE boards with regard to supplements. I'm not eating very well either at the moment but now trying to. I mostly follow the LE diet (anti-inflammatory and limited artificial sweetners/preservatives ) and I'm vegetarian and Gluten-Free. The GF diet cured the stomach issues that I have had for years and which Tamoxifen made worse. It's hard to eat well.

My pain is much better as long as I don't try to reach too far or carry anything. I'm still exhausted so going to have to work on that.

Scottie

Molly50

The office my PS used to work out of recommended Arnica internally and externally. Arnica Montana, I also have had great success with calendula cream over the entire breast. It really helped especially after I healed from radiation. PS said my radiated side skin was really nice. What is Calendula and how to use it. I used organic baby Calendula lotion or you can make your own.

wallan

Hey ladies:

PS office just called. Next surgery - May 3. This is to continue fat grafting procedure on right side from the mastectomy I had 13 years ago. Its a 2 hour surgery - home same day.

I am shocked this next surgery is so soon. Initially, the PS said the surgery would be in June or July. I guess because I do not need radiation, the surgery date was moved up.

I am still recovering from the last surgery. I have fatigue that seems to hang on. I am waking up after a full night sleep, still exhausted. I go for a walk and I feel wiped out. Its been 5 weeks since the last surgery. I have read about this as cancer related fatigue. I must admit, if I am more active for a few days, the fatigue is worse. I am hoping this fatigue will dissipate soon.

wallan

Molly50

(((Wallan))) are you getting enough protein? After my ruptured hematoma following umx #2 , I was so exhausted from the blood loss and slept about 10- 12 hours each day. I wanted to get back to work and so I went on a mission to get my energy back. (appetite too!) I had my daughter take me shopping. I bought red meat (pot roast, hamburger), prunes, bags of fresh greens like kale and spinach and made meals centered around protein, greens and prunes. It really did work though it was tough at first to force the food down. I was back to work 3 weeks post emergency surgery. I credit it to mainly the red meat and yes the prunes lol. My BS still laughs at that one!

wallan

Hey Molly50:

maybe I am not getting enough protein. I have meat everyday but at supper and just a bit.

i will boost it up. My appetite is good. My spirits are up. Just tired. And not sleepy, but brain fog and lack of energy.

Thanks... I will keep you posted.

wallan

raven4mi

wallan, there's no law that says you HAVE to have the surgery when they've scheduled it. You should feel comfortable asking to postpone it until you have more energy and then do the suggestions Molly gave you for increasing protein and other energy-boosting foods. Good luck whatever you decide to do.

In other news...........

DING, DONG,THE DRAIN IS DEAD! Which old drain? The Wicked Drain.

Woohoo! I'm so happy! I e-mailed my drain output for the last three days (20, 25, and 20 - I may or may not have fibbed by 5 ccs or so. Sshhhh!!!) and PS let me come in this afternoon to have it taken out. His intern asked how long it has been since surgery and it is 4 weeks tomorrow, so he let it spill that they would have "fish or cut bait" soon anyhow (which I believe is a phrase someone else's PS used too.) So I feel better about whining and pushing to have it out.

And, even better, my culture came back negative. So it's a bit of a mystery as to what that whole episode was about last week-end. Personally, I think it may have been my body giving me a "whoa" warning. After 1 year since original bmx I'm so anxious to get through all this that I pushed for a 100 cc fill, followed by lifting some heavy boxes over that next subsequent week-end. My boob had had enough! LOL! I may never know what it really was but that's ok. Lesson learned. If I don't get through this until the fall that's OK - there's no race to win here.

Hope everyone has a blessed and enjoyable Easter week-end. We're off to visit family.