June 2014 Surgery Sisters

It is important to know that distant recurrence is not affected by whether you do LX + rads or MX, the distant recurrence rates are similar. Once the horse is out of the barn (meaning the cancer is invasive) it cannot be shoved back in, even if you remove the breasts. It does reduce risk of a local recurrence or new primary, but you still need to be vigilant as MX does not remove all breast tissue. However, MX seems more common in ILC than LX because of its sneakiness, the difficulty in getting clean margins due to its nature, its tendency to be closer to or in the chest wall, and it is a higher risk for contralateral BC.

My mother had an ILC dx in 2006 at 48. Hers was missed on annual mammograms, CBEs, self-exams etc. It was found about 3 months after her last mammogram when she was getting physically examined for another reason and then was sent for MRI. By that time it was over 6+ cm and in 19 nodes. ILC is very very sneaky as it grows more in sheets than lumps (and feels more like a thickening which might be hard to distinguish in denser breasts) and often does not show on mammograms...my mother was quite vigilant about screening due to our family history, but no one ever thought to send her for MRIs or US despite breast density and that history.

It is not recommended to screen regularly for distant recurrence. The standard of care is only when symptomatic. The reason for this is because of the risk of radiation and so on from so many scans (remember, mets can show up in many places in your body, so you would need a lot of body scans of different types) and blood markers are known to be unreliable. There is scanxiety. Things can light up that are benign and not mets (like in lungs) causing even more stress. And, finally, research shows no improvement in survival time with diagnosis by scan before symptoms. It just means you know about it longer.  

My mother's mets were found in April after having a symptomatic hip (pain, stiffness) that was different than her bone pain from her arthritis or her AI. So far it is only in her hip/bones and hopefully stays that way for a while. She was still on an AI at time of her mets diagnosis (her original treatment was chemo (she had 8 cycles as the first 4 were found not to be effective enough on her tumour), bilateral MX, 6 weeks of rads, Tamoxifen for 5 years than AI for last 3). She is now on Femara and getting rads to her hip, and waiting for biopsy results on hip to see if chemo would be advantageous.

ETA: here is link of mets symptoms and what tests they may run to determine if you have mets: http://www.breastcancer.org/symptoms/types/recur_metast/where_recur/metastic

My PS has the same mindset as Sandra's, no activity until the drains were out and I was only allowed to use T-Rex arms as well.  I had a large output of fluid from the very beginning and he wanted it at or below 20 for two days in a row.  I was so tempted to go for a walk but not enough so that it might hamper me getting the drains out - at that point I wasn't taking any chances. Many other doctors don't feel the same way; it's crazy how their views differ.

Bethq, glad to hear from you.  Valium made all the difference in the world the first few days, especially at night so I could sleep.

This us how sneaky ILC is. This is my MRI following a negative mammogram, ultrasound and CT.  

Hello ladies, so glad to hear the good news that everyone's been reporting.  My June 5th surgery went well.  The staff did a wonderful job at managing my pain, and I had no nausea whatsoever.  I haven't found out yet exactly how many nodes were taken, but the prelim reports stated that they were clear!  It was a good experience to wake up with breasts.  I was released from the hospital today, and even the 70 minute drive home was comfortable.  I was expecting every bump to cause me pain, but I did well.  So far I'm very happy with choosing DIEP, and don't think there will be any regrets...I am truly blessed!

One love,

tp4ever

Hello all! I'm so sorry I haven't checked in until now. My surgery last Tuesday went well. I had BMX with SNB on the right side and DIEP flap reconstruction. Oh my, the nuclear injection for the SNB was painful, even after the shot of lidocaine. No node involvement, although I'm still unclear if or how many nodes were removed. I'll get answers to that in a week or so. Bottom line is that I should not need chemo. They did find more DCIS in the right breast and atypia in the left breast so I'm definitely pleased with my BMX decision.

Surgery was long - about 8 1/2 hours - and then I had trouble breathing so they had to reintubate me. I wasn't able to get to my room for another 3 or 4 hours after surgery was over. I had to wear an oxygen mask the first night, and it's been strongly advised for me to have a sleep study done for apnea. On Wednesday morning when the PS said I could probably go home Friday I thought he was nuts but I did indeed go home Friday. I still have all 4 of my drains. I honestly think that's the worst part right now. The drain sites are extremely tender and the ones on either side of my abdomen are placed such that I can't pull up pajamas or even underwear very far. I am allowed to shower and I quickly discovered that not only is the lanyard a great thing to use for the drains when showering, but I actually hook the drains to the lanyard 24/7. Then I don't have to pin and repin each one to my clothes. I have two lanyards (one was sent to me from a breast cancer group and the other is actually from a trade show conference!) so one can get wet.

Funny story about pain meds: from after surgery until noon the next day I had a PCA pump but I didn't push it much because a) I was so out of it even though I was checked on a minimum of once an hour and b) I either wasn't told or didn't remember that the minimum amount of time between pushes was 10 minutes. So somewhere around 10 hours after I got to my room the nurse checked the history and told me that I was allowed up to 2 mg per hour. I had only used 1.6 mg during the entire 10 hours! 

I'm glad the doctors and nurses always made a point to say how good my incisions look because I think they look very Frankenstein-ish. I'm very bruised and swollen and I have some awful blisters from tape.

I have a follow up with PS tomorrow morning. My drain output is pretty low now so I hope I can get all of them out, but should definitely be able to get rid of 2 of them.

I'm sure I have a lot more I can share and I promise I will but I think it's time for a nap.

Muscle spasms: I forgot to mention.....I really advise warm showers BUT only if your bathroom is also warm when you get OUT of the shower...the first one, as soon as I got out I started shivering and the spasms really took hold. So now we use a space heater in the bathroom to get it really warm.

Today I am going to attempt to wean from my Percocet and Valium because I am feeling like a zombie. Hoping Tylenol  will go the trick.

gila, glad we're both on the other side!  We're official flappers now, my friend.  I should not need any chemo either, so that was good news for us both, right?

worryocd, yes, the anticipation is worse than the surgery.  I am just amazed that I haven't had any issues or complications, and it's been such smooth sailing.  Even if I end up with a few bumps in the road ahead, I couldn't have been more blessed.  The DIEP flap and reconstruction is awesome.  I truly feel whole, even though I'm still recuperating.    

My surgery started around 7:00 am, and lasted about 4.5 - 5 hours.  I stayed in recovery about 2 hours before they wheeled me to my room, so I was all settled in the "sweet suite" by 2:00 that afternoon.  

God is good.

One love,

tp4ever 

Hello Everyone. I just came across this forum and thought I would say Hi. I had my bilateral mastectomy with TE implants last Monday.  I was in the hospital a little under 24 hours and was home by noon the next day.  I had very little pain and was up walking around the halls of the hospital the evening of my surgery.  I had a rough day on Saturday...a lot of crying and a "why me" moment when I looked in the mirror.  I was diagnosed with triple negative cancer in my left breast in October, so I have already undergone 7 months of chemo.  During my chemo, I continued to work full time as an orthopedic physician assistant and took care of my two children (currently 15 months and 3 years old.)  My husband is a CPA so he was busy with tax season during my chemo.  So I really did not have time to worry about what if's.  It just took all the energy I had to get through each day.  

Now that I have had my surgery, it is a lot harder for me.  I am forced to sit all day and "recover."  Currently I cant lift or take care of my children and its killing me.  I have been more depressed this last week than I have since being diagnosed because I finally have the time to sit and think about everything.  But as far as my surgery is concerned, I am happy with the results thus far.  I have one drain on each side and already have some shape of breasts from the TE.  I see my plastic surgeon tomorrow for my first follow up and I am hoping that everything goes well.  

Today has been my roughest day so far.  I overdid it yesterday playing with the kids and cooking dinner.  I admit that I gave my baby her bottle and then put her in her crib when she feel asleep rather than waiting on my husband to do it.  I got an earful from him and really felt it today.  I was barely able to move my arms this morning.  But I have been a good patient today and have barely been off of the couch.  I feel much better now.  

I just wanted to say Hi and introduce myself.  Its great to hear all of your stories about your surgery and your recovery.  It makes me feel like I am not the only one.

Thanks!!!

ok so have to vent.  hospital called for pre-admission and stated i was scheduled for 11:45 a.m. surgery.   Dr's office told me surgery 7:15 a.m.  So anxious as it is and now will have to deal with this tomorrow.  argh.

I continued to get around pretty good today - kinda hunched over at first and able to straighten up the more steps I take. I have not used a walker at all - at home or in the hospital. I walked with the assistance of the arms of others at first, just to make sure that I was steady, but now I walk alone. I'm sleeping and resting in my recliner. I am able to lower and rise from a regular toilet seat without assistance. I would say that if your thigh muscles are a little in shape, it helps. You will have to use your thigh muscles alot to sit and stand. And my recliner is not an electric one - just a regular manual one that I purchased last year. I have my daughter or bestie lift and lower the foot rest for me. I'm not ready to try and do that just yet. I have to admit that I get kinda stiff just sleeping on my back, but I am able to rest, so I guess that's all that matters. I would give anything to just be able to shift to my side for about 15 minutes. Lol, but I can't - don't want to compromise the blood flow to my flap. I came home with the typical four drains - one from each breast and one from each hip. My output is way down in the breasts. I think those two drains will come out at Thursday's post op. I don't know what it is, but my daughter/nurse has been recording it on the Log sheet provided by the hospital. The drains are AS irritating as I thought they would be, but they are sometimes a pain and get in the way. Oh yea, and my daughter says that I'm "jumping" alot in my sleep. I've felt it myself a few times and woke myself up. I'm not sure what that's all about...lol

Sammyjokk, you will do fine.  I was feeling the same way you're feeling now.  But when our surgery sisters say that all you have to do is show up, they are telling the truth.  You do not have to be brave, just show up and be ready for a nap.  And my breasts look so good - even when I feel myself getting down about not being able to do much for myself, I think about my breasts and smile!  I hope to take some pictures soon and share on the picture forum.

Nicole, welcome friend!  Be sure to take it easy and not overdo it.  Allow yourself to be down and cry when necessary.  It will help you have more "up" moments.   Hope your follow-up goes well tomorrow.  Stop back by here and let us know...

jbokland, love the head bedazzle designs!  What a great idea!  Go, Sassy Head!

trish, argh is right.  With everything we've got going on right now , we need those things to be set in stone, and the care team to be on the same page.

aff, glad to hear you're doing well.  Here's wishing you continued healing.  When the time came for me to go home, I really wanted one more hospital day.  But once I got home, I was glad to be home.  I just feel so doggone helpless.  Oh well, it is what it is.

One love,

tp4ever 

Good Morning May surgery sisters.  Just checking in on you all and seeing that it seems to be going quite well for you.  That is great

Gila - sorry to hear that you had those issues - scary stuff but glad to hear you are ok.

Jbokland - ordered a bedazzled head today - will take a picture when I where it - I think I will save it for my next PS visit - that will be June 30th - I always try to do something different each visit there.

I had my one-week post-op drain check appointment yesterday and was so happy to have one of the two drains removed.  I'll return Friday to hopefully have the other one removed.  I had a hard time emotionally over the weekend; I was so done with being so friggin' uncomfortable every minute of the day.  Getting even one drain removed cheered me up immensely.

I agree- go with the emotions. You have every right to feel them and feel bad, whats happening sucks!  My first few months were super hard, but it got better.

Sleeping on your back: I found laying back on pillows, or semi propped up on my back was much more comfortable than flat back sleeping. Also Id highly recommend a pillow under each arm, makes it much more comfortable. I still do months later.

Hate when they change your surgery time to later!!! But what can ya do