June 2014 Surgery Sisters
Comments
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jbokland- Like you, I have very dense breast (not as big 32C) and almost always received a ultrasound after my mamo's. However, after my mamo last year they felt I did not need an ultrasound. The lump I found did show up on the mamo my doctor ordered. After my biopsy and talking to a surgeon the MRI was ordered. That's when another lesion showed up on the same breast (left) and a precancerous lesion on my right side. I ended up getting a CT from my neck to abdomin but that was because of my past history and they wanted to check if it had spread anywhere else. I never asked if it showed up on that. I ended up getting another MRI. This was a research MRI at the Stanford Breast Center. It's the latest and greatest MRI scanner. After that, a 3rd lesion was detected on my left breast. The second two lesions are small and the think they are not connected. Given the sneaky nature of ILC I will not be surprised if they are when final pathology comes back. I'm praying and holding the light that it hasn't spread to the nodes.
Wildflower- I don't know what my follow up will be yet. I worried about recurrence and that's why I have chosen the BMX as my surgery instead of a lumpectomy. Because I'm ER+/PR+ the doctors say that the tamoxifen I will be taking will significantly reduce the chance of recurrence. I'll have to wait for final pathology after surgery to see how much ILC I really have. Becuase of its sneaky nature, I would not be surprised if there was more than all my tests showed. I see you are ER+/PR+. Are you taking any hormones as part of your treatment?
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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
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I saw my onc last week for 3 mos check up. I have had a dry cough for a few weeks and if it doesnt go away by end of month I call them and will get a ct scan of lungs. I doubt its anything, but its scary anyway....
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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.
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I agree that Valium is a life saver. I had no muscle spasms with the BMX, even though immediate 800 cc implants were placed. But two weeks later when I had the second surgery (because of infection), the left implant was removed & an empty TE put in, WOW. The spasms hit on that left side and I was pretty miserable that first night. The PS ordered Valium the next morning after seeing me on his rounds. Life became tolerable right away. Now before each surgery I ask him to order Valium in case I need in again that first night in the hospital.
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Ucfmom, I think we have the same surgeon.
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ojoy-- yes, I'm hormone positive and start tamoxifen shortly after surgery. Like you, the recurrance concern is why I ended up opting for the BMX. I too have dense breasts and felt I would never feel cancer free after a clean mammogram. I am a very proactive person so it's going to be hard to just let go and not worry but that looks like the healthiest approach. I don't want to drive myself crazy worrying all the time.
DiveCat--thank you for sharing the information on your mom as I don't know of very many women who have had ILC. I hope her mets stay under control-- it has to be much harder the second time. As you mentioned, the risk of radiation is the reason my surgeon gave for no scans for two years so that must be the standard of care. Knowing that scans do not increase the chance for survival is helpful in reducing my anxiety. BC has had my full attention for almost 7 months so it's going to be a challenge to just move forward after the surgery and not focus on it. Hopefully the chemo did its job and I've done everything I can to prevent recurrance.
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This us how sneaky ILC is. This is my MRI following a negative mammogram, ultrasound and CT.
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Oh wow - this is making me question my UMX decision again. Not to mention I have dense breasts and absolutely hated the MRI. I hope I'm not leading myself into many of those - UGH. Buyers remorse today, hopefully tomorrow may be different #can'tchangeitnow.
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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
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Thinkpink-- glad to hear you are doing so well and that y. Lymph nodes were clear. Sounds like you are on the road to recovery and the worst part is over.
jbokland-- Wow! Your MRI is amazing-- I never saw mine. Sneaky is understatement .
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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.
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I'm so happy to read that you all are doing so well after your surgeries :-)
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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.
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Hi ladies!
Think Pink and Gila I am so glad to read that your surgeries went well. I am sure it's a relief that the surgery is over.
Divecate..thanks so much for info about ILC. Your post is a reinforcement that I am doing right by having a PBMX.(braca1positve)
Jbolkand..thanks for sharing the MRI pics. I did not get the chance to see mine.I have a question...so the spots that are suspicious are the yellow and red?
I keep reading that the anticipation for the surgery is the worst part. I am just enjoying my life as it is right now. Enjoying my boys and husband. My boys are 7,5 and 2. Since my MRI was clean, I pray my pathology will be as well. My story to my kids is that I am having by breasts fixed. It's not a lie! They are getting fixed.
This site is a valuable resource and an excellent support. Thanks to all who share!
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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
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jbokland,
Not sure if you saw my Congratulation on the last day of your chemo last week. Thankyou so much for sharing as much as you do on here. It's awesome you are such an open book. I too have very dense breasts and DD, a very small amount showed up on my mammogram and ultrasound but not the full size of it. I don't have ILC I have DCIS and just knowing they only saw about 2cm. And ended up 7.5 cm. goes to show they need some other means for screening us large,extra dense breasted women. Guess after my BMX I won't be worrying about it ever again. Was it the red/orange the cancer? I'm worried when I have my surgery they will find something more because of the size of my hidden findings.
Thinkpink4ever
It's great to hear you are doing so well this soon after sergury. Especially since you had the Diep. It really eases my mind a bit knowing your moving around and made that long drive home. I'm happy to know you are having a positive experience and are satisfied with your decision. I've been questioning if I made the right one. I hope your recovery keeps on getting better each day and you get good news on your final report.
gila4936
I'm also happy to hear you are home and doing well after your DIEP. Sorry to hear your injection for SNB was so painful. They do it while your awake? Great to know you didn't need much pain medication. Hope your recovery keeps going well.
Bethq..slappy squirrel..sweatpeakisses,
Also anyone I have missed, happy you are all home and on the other side of your surgery. Sending good energy for a speedy recovery.
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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!!!
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On the MRI...The blue is the cancer...Yellow and red are suspicious. It was a large tumor, quite a distorted picture when you are dangling the titties downward!
Another subject:
When I was bald, I started 'bedazzling' my head. I just couldn't be comfortable in a wig and I preferred to go topless, but was a bit shy about it. It was SO wonderful to decorate my head and have people stop me to chat instead of give me that sympathetic half-smile and a nod. I could not get through a shopping area or public place without being stopped or complimented . More importantly, I was having wonderful conversations with people about their stories, their cancer experience. It made me proud and confident.
Anyway, through lots of encouragement, I launched my own product and I call it Sassy Head. I only have one design now, but I REALLY need some people to give it a test spin for me. It works wonderfully on my skin ( I could sleep in mine and get 2-3 days use) but everyone is different.
I have a very simple website (not pretty, but it works) if you would like to try one out. I am selling these for $8.00, but if you use the dropdown next to word Standard and select BCO, it will give you a price of just $2.00 (plus 3.00 for shipping).
Below are some pics. The first group was my head when I was bedazzling, and the second is my available design. I plan to do additional designs, including a pink ribbon and designs for children. Your suggestions are welcome!
www.sassyhead.com
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Welcome Nicole32. I understand exactly what you mean. At first it's all "hurry-hurry" and lots of worry about what pathology will find. After surgery, the reality of it all sets in. Dealing with drains and restrictions makes it even more difficult to cope. Somehow you MUST figure out a way to rest. With small children, it would have been a good idea for a friend or family member to be with you the first week. It's not too late to get some help. You cannot ignore the restrictions unless you don't mind healing to take even longer! We have a saying on BC.org - "Just because you can, doesn't mean you should." Most of us find recovery is one step forward, one step back at first, then slow progress to about the 3 week mark. Most of us feel better by 3 weeks. It's still to early to be picking up anything heavy and even though you will have some more energy, don't be surprised if the least bit of activity wears you out.
Glad to have you join us Rose111. Most of our group has had good luck with their surgeries and recoveries so far, so you've come to the right place!
Think and Gila, great reports on your surgeries. So glad it's going well. Keep checking in regularly.
Dense breasts have finally been given the spotlight in the war against cancer. Many states now require doctors to alert patients if their mammogram showed dense breasts, and advising them to get further studies. (There is a good website for an organization of women with this condition. LOTS of good info for us at every stage. Google Are You Dense.) I had them too but didn't know anything about how they can affect diagnosis. My mammo showed trouble in only one breast and another mammogram agreed. I had an MRI to make sure nothing else was in either breast and got a thumbs up...right was the only problem. I ended up choosing a bilateral mastectomy anyway. Pathology showed the DCIS was already to the edge of the ducts and we caught it just in time. No node involvement yet. They checked 4 nodes on each side with the SNB. What we thought was the good side showed lots of LCIS which had been totally missed. It was also ready to break through the lobules. If I hadn't insisted on the BMX, I would have given that LCIS another year to grow and maybe become ILC and escape to the nodes. ILC is only 10% of breast cancers so it doesn't seem to get the research money that IDC does, but women with ense breasts seem to be leading the fight to bring a spotlight to lobular breast cancer.
On another subject, sentinel node biopsies (SNB) can be done two ways. Find out from your surgeon what is planned for you. Some women have it done the day before surgery. Mine was done two hours before surgery was scheduled. Radiology will inject one of two substances into the areola around your nipple(s.) The substance flows from the end of the ducts in the nipple all the way through the ducts and lobules into the lymph node system. The first lymph node(s) that the substance goes into is the Sentinel Node(s.) Often they are like grape clusters so several are removed. If the SNB is clear of cancer, they don't take more nodes. Many women have a blue dye injected and most report it didn't hurt a bit. I understand it will turn your urine blue or green for a while afterwards. It stains the SNB so the doctor can find it easily. Others, like me, have radioactive isotopes injected. The doctor uses a special Geiger counter to locate the SNB in the OR. If this is what you are getting, ask you doctor to order an anesthetic cream, Emla, that is put on your nipples before the test. The radioactive isotopes are a different Ph than your body so the injections sting. But it's 5 seconds and then over with, so it's not a big deal.
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Hi everyone. Surgery went very well last Friday. I was in the ICU from Friday night thru Sun morning due to the DIEP reconstruction. Have made significant progress since being transferred to my own room yesterday. I was able to get in and out of bed on my own today and should be going home tomorrow.
Best of luck to everyone scheduled this week.
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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. -
trish I hope you get your surgery time sorted out, that would make me anxious as well.
aff That's good that you can now get in and out of bed on your own, that's a big step
jbokland I love your bedazzled head! I only wore scarves but would have loved to have jewels like you!
Kendra
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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
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jbokland, love the bedazzled head!
Glad to hear everyone is doing well from their surgeries.
Trish, I hear ya, we have the surgeries on the same day and I feel like I'm running around trying to get last minute things done especially around the house(my hubby decided the room I'll be in, our library isn't sanitary enough so he's painting, ripping up the old carpets and putting in hardwood floors so when I come home everything will be ready for me) and you don't need another thing to worry about especially mixed surgery times! I just got my pre-admission call today. I have to check-in at 6am and the surgery doesn't actually start until 8a and I was told the surgery would be 6 hrs. What a long day, but luckily I'll be asleep for most of it. Hopefully, you'll get it all squared away tomorrow, still what a pain!
Getting a bit nervous as the clock winds down, so much things to remember to tell the anesthesiologists, the PS, and my doc on things they told me to remind them. grrr. My biggest one is that I don't want to wake up during the middle of surgery. It happened during the last lumpectomy. It was an instant wake up shock in pain and realizing I'm laying in the OR still being operated on, ugh talk about never wanting to relive that again! Granted as soon as I woke up and groaned with pain, I was given something to go back to sleep but the remembering part is what gets me. ugh.
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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.
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Nicole - what is happening to you emotionally is quite normal. Many who have surgery first then chemo hit this emotional and depression wall after chemo. You are hitting it now as you have now basically finished your treatment. It is sort of like, well it is, post traumatic stress. You may want to reach out for help for this issue if it persists. There is no shame in needing help to deal with all this emotionally - and especially with small children to take care of also. Remember for the last 7-8 months your were in serious fight mode.
Let yourself cry when you need to - you have every right to be sad. Crying actually releases stress so sometime crying is what our body needs. Rest is important right now and I agree with Sandra - it isn't too late to ask for help at home. Even if it is just a few hours here and there.
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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.
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glad to hear everyone is moving forward!
Mulligan- Bravo to your hubby to do all that work in your best interest!
Nicole- I was warned about the emotional let down. I thought I was exempt, after all, I am Sally F'en Sunshine! Nope!!!! The adrenaline dump after the fight for hour life months is a force to be reckoned with. You take stock if the casualties this has caused and really feel it.
Don't let it last longer than a week tho. Go see your doc if you don't swing around.
Linda- thanks for trying it out! It's in the mail!
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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
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