February 2010 Mastectomy

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  • Lainie55
    Lainie55 Member Posts: 2
    edited March 2010

    Hi Everyone;

    I had my right modified radical masectomy on February 16th. It's comforting to read that I'm not the only person who is experiencing some "issues" after surgery, though I wouldn't wish it upon anyone. I still have both of my tubes but am hopeful that they will be removed tomorrow by my surgeon's nurse. I did great with the surgery but have been physically wiped out since then. I had chemo to begin with to try to shrink the tumor and to reduce the size of some of the nodes so was worn down by that in the first place. But it was really the surgery that did me in. I haven't experienced much pain and have only had to use ibuprophen or aspirin to take care of it. The only pain I really have now is under my upper right arm where (I assume) the nerves are starting to grow back and where the tubes go into my body. I have been able to drive short distances but am very careful as I don't have full rotation on my right side yet. I'm not familiar with the abbreviations you use so would appreciate it if you would explain them to me. Also, I will be seeing my oncologist again on Wednesday so am wondering what information you might suggest I ask him? Up to this point, I guess I've been in la-la land and don't have some of the information you seem to have. Here's to wishing everyone who has to go through surgery the best of luck and to just take it as it comes. Sometimes that means minute by minute.

    Take care,

    Lainie

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  • toughtitties
    toughtitties Member Posts: 17
    edited March 2010

    I too had clean margins and negative nodes. My onco score was 3 so I am told I don't need chemo and radiation is not needed. They are just telling me to take the Tamoxifen. The side effects scare me. I had a PET/CT scan last week and everything looks good. I am cancer free.

    Is there anyone out there who has had a relatively side effect free Tamoxifen treatment? I know its like an insurance policy of sorts - I just wish it was easy. I guess I am a wimp and I don't want my life messed up more then it is all ready. :( 

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited March 2010
    Groundhog, best of luck tomorrow with your chemo. We'll all be thinking of you. Good idea getting the chocolate in while you still could.
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  • rockermom
    rockermom Member Posts: 15
    edited March 2010

    hello all trouble sleeping so i thought i would check in.  hope all are recovering well.  i had my two week follow up this afternoon and still have all 4 drains.

    i checked in a couple days ago and saw where a lot of you are still on pain meds-- i had tried to go without them but it wa tooooooo uncomfortable so i have started back and fell a lot better.  having sharp pains shooting thru my chest and rom is not real good but, Dr. said as long as i have my drains he does not want me trying to do very much i feel like such a weakling when i cant even pull open a door but this too will pass.

    i hope cakeisgreat is doing well.

    good luck to all going for treatments and results.  starting to feel like i can sleep so i'll check in tomorrow with chocolate cake YUM.

    hugs and prayers to all.

    rockermom

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  • hereandnow
    hereandnow Member Posts: 322
    edited March 2010

    Hi Rockermom, I tried to be all "brave" and go without my strong painkillers today, but by tonight, it's really sore, so I'm diving back in. Ahh, the relief of oxycodone. We don't have to put up with pain, we're putting up with enough without that. And I'm going to have some more chocolate. Hope you ended up having a good sleep,

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  • LauraM
    LauraM Member Posts: 251
    edited March 2010

    Hi all, it has been a few days since I have checked in, been on sort of an emotional roller coaster since I got the path report back that there is new cancer under my underarm in that fatty tissue area.  Was scheduled for surgery on Friday to remove that whole area and all of the nodes under my left arm but we are still waiting on Sloane Kettering to get back to us with their second opinion so surgery is iffy at this point.  I have haven't been sleeping very well, still in the recliner because I can't get comfortable in bed and I really don't want to have to wake my dh up in the middle of the night to get me up to go to the bathroom.   I really can't wait to sleep in my own bed again.  My incisions seem to be healing really good but I am getting lots and lots of burning in my core ab area that seems to keep me up at night and unfortunately is making me cranky and easy to cry.. I usually have such a strong pain tolerance that this has me all out of sorts.  I had been getting by on 3 x strength Tylenol every 5 - 6 hours and 1/2 Valium at nap but the last two days that hasn't even touched the burning.   I got up this morning and went back to taking my Tylenol with Codeine and that finally seemed to take the edge off the burning.. YEAH!

    My Oncology appointments set for the 18th, chemo now seems definite since they found the new stuff, but I will consider my self fortunate they found it since as they tell me only about 5% of the patients get cancer in that area and it is hard to find.

    I hope we hear from Cake soon and that the rest of you continue to heal both physically and mentally.

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  • toughtitties
    toughtitties Member Posts: 17
    edited March 2010

    Laura M - How did they miss the second cancer on the first MRI? I can't imagine it grew in that short amount of time? 

    Ladies - are you having PET/CT scans? These are so sensitive at pinpointing areas of concern.  

    All doctors and hospitals seems to take a different approach. It is totally confusing to me.

    Do all hospitals have tumor boards where your case is presented by your physician and then reviewed in front of all the doctors to form a treatment plan?  

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  • Faith316
    Faith316 Member Posts: 2,431
    edited March 2010

    PET/CTs are sensitive.  Sometimes they pick up other inflammations other than cancer.  For example, arthritis will often show up.  But, a cancer has to be about a centimeter in size before it will be picked up by a PET/CT.

    I don't know if all hospitals have tumor boards or not.  I would suspect that most do.  My local hospital does and my case was also presented at MD Anderson Cancer Center's tumor board.  I was glad for that.

    Hope all are well today and don't forget your chocolate cake today!

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  • star-light
    star-light Member Posts: 10
    edited March 2010

    Hi,

    I had a bilateral mastectomy and sentinal node biopsy and tissue expanders on Feb 24.  I felt pain mostly from the tissue expanders for the first 10 days.  The pain was more of very tight pressure from the expanders.  I still have one drain in my left breast that still cannot come out until the fluid is under 50 cc.  so I try not to use my left arm too much.  Otherwise I feel great and started walking outside about 5 days after surgery.

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  • star-light
    star-light Member Posts: 10
    edited March 2010

    Hi,

    I would like to be added to this group.  I had a bilateral mastectomy, bilateral sentinal node biopsy and bilateral tissue expanders on Feb 24,2019.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited March 2010

    Welcome star-light.  I'm going to add you right now!

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  • chalex
    chalex Member Posts: 131
    edited March 2010

    Hi Ladies,

    Sorry Laura to hear you are feeling so much pain. I say stick with the pain meds if we need them. I know you are confused with what to do but I would try to research as much as you can. What chemo will you be starting? Can you do surgery and chemo at the same time? I guess I am asking can the chemo get rid of the cancer in the fatty tissue without surgery......

    Welcome star-light. I hope you feel comfort with us ladies who can understand what you are going through.

    In Ontario, PET scans are not part of standard care. There are long waits for them and if you want to go to a private clinic you have to pay yourself. CT's are part of you work up for staging but I don't believe I will getting one until 1 year after diagnosis.

    cornellaum- I PM'd you.

    Question:What are tumour boards? How do you know your case was presented?

    Chalex

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  • badger
    badger Member Posts: 34,614
    edited March 2010

    Hey all, just a quick note to say first chemo went pretty well, fairly uneventful so far.  It's TCx6 which means six treatments of taxotere and cytoxan that I will have every three weeks.  One down and five to go. 

    Thanks for the prayers and well wishes!  It doesn't look like we heard from cakeisgreat yet so sending good vibes to you sister and {{hugs}} to all.

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  • hbowser
    hbowser Member Posts: 253
    edited March 2010

    Good evening all.  I hope cakeisgreat is doing okay. Hope to hear from you soon.

    Chalex - At the hospital where I went after being diagnosed with breast cancer, I met with a nurse navigator first.  She set it up and told me the time of my appointment with the tumor board.  My husband and I were put into a examining room and the different doctors came to see me.  They all had copies of my biopsy and MRI results.  I was seen by my breast surgeon, another breast surgeon, plastic surgeon, medical oncologist and a radiation oncologist.  They all went over what their purpose was in my treatment plan.  At this point, I was scared and had a lot of questions.  They explained everything thoroughly and then they met again.  Then my surgeon and medical oncologist called to go over what the tumor board recommended as my treatment course.  Hope that helps.

    Question:  Is anyone continuing to experience sensitivity to clothes touching their skin?  I am still feeling soreness/sensitivity in the outer area of my surgery site and not near the incision site, if that makes sense.  

    Welcome, star-light.

    Praying that all of you are continuing to heal nicely and feeling better each day.  Take care.

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  • cakeisgreat
    cakeisgreat Member Posts: 660
    edited March 2010

    hey guys!  It's Cake!  Just quickly checking in...I feel like BLEEP BLEEP BLEEP BLEEP BLEEP!  And I'm asking myself...why did I do this!

     First time I sit here and PRAY to Poop!  More later when I am sane :)

    Love you guys!

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  • LauraM
    LauraM Member Posts: 251
    edited March 2010

    Chalex - All of the second opinions came back and recommended surgery to remove all of the nodes and the fatty tissue around them.  I don't know the type of Chemo yet, won't be going to the oncologist until the 18th.  Surgery is now scheduled for Monday.

    toughtitties I was told by my doctor that mamo's and MRI's don't catch cancer in this area and there is only 5% or less chance to be cancer in this area.   Everyone agrees so far that if my bs had not taken the tail swipe we would not have found this.  What they actually found was 2 new tumors one under .2mm and one under .3mm so both very small but different types.  When ever they tell me there is a less then 10% chance of something happening.. I usually fall under it.  Just my luck!

    Hope to hear from Cake soon!

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  • Faith316
    Faith316 Member Posts: 2,431
    edited March 2010

    Cake -- glad to hear from you.  We can ALL relate to praying to poop after surgery!! 

    Regarding tumor board --- I was referred to MD Anderson Cancer Center in Houston, TX because my situation was very unusual.  I was originally dx with IDC in 4/08.  While I was still on chemo and in the midst of radiation, my cancer came back as IBC.  My local onc had never had a patient present with more cancer while still on chemo and radiation, so he referred me to MDA.   They are the only place that has an IBC program.  My onc there had also never seen this happen.  So, my case was presented to their tumor board to determine what treatment I should have at that point. 

    Apparently, at MDA, their tumor board only meets once every couple of weeks and only unusual or difficult cases are presented.  My case was only 1 of 2 cases presented during that particular tumor board meeting.  I had met with my onc. that morning and he asked me to come back that afternoon for the tumor board meeting.  When I got there, they took me to exam room and I talked to my doctor again.  (He had already met with the other tumor board doctors and told them the particulars about my case.)  Then, all those doctors crowded into my exam room and all examined me and asked me lots of questions.  (There were maybe 8 doctors?  Some surgical oncologists, some radiation oncologists, some medical oncologists, some breast specialists, some ????)  After they were finished, they all left and reconvened to discuss what my treatment should be.  Later, my doctor came back in and told me about their discussion and what they recommended for my treatment.  I don't know how other tumor boards operate, but that was my experience.

    Everybody keep hanging in there.  One day at a time!

    Love to all.

    Faith

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  • olivia218
    olivia218 Member Posts: 257
    edited March 2010

    Cake - 

    So glad you checked in! Sorry you are feeling so bad!! Hope we hear from you soon!

    Olivia 

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  • badger
    badger Member Posts: 34,614
    edited March 2010

    {{cake}} thanks for checking in -- we are officially past the surgery phase and onto the recovery phase!!

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  • LauraM
    LauraM Member Posts: 251
    edited March 2010

    Cake - Glad to hear from you! 

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited March 2010

    Hey, Cake! It's good to hear from you!

    I went in today because I noticed a light rash yesterday when emptying my drains. Since I have my node surgery Thursday, I wanted to be sure it wasn't anything to worry about. They said it was probably a reaction to the vicodin. Anyone else had that problem? It hasn't been especially itchy, although my whole torso has been a little itchy since the surgery.

    I was expecting to get my right drain out and thought they might leave the left in because of Thursday's procedure. Turns out I had them both removed. Yay! It's amazing what a difference that makes in how I feel and in my posture. I actually got to take a shower! I'll enjoy it for a couple of days, then I'll have to start over on the left side again, but it's nice to feel really clean.

    hbowser, my skin has also been really sensitive. It's all I can do to endure the camisole, and that's mainly because it's better than anything else. Well, I guess walking around au naturel would be lighter, but that's maybe not a great idea. And it's been pretty chilly, even here in California.

    Karen (caltex_catlady)

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  • olivia218
    olivia218 Member Posts: 257
    edited March 2010

    caltex_catlady

    I had a rash too. I was so worried it was so infection. I called the BS and he said to put some biatracin on it and take a benadryl. If it increased or did not get a little better to come in.  It did get better.

    hbrowser - my skin is still sensitive especially later in the day.  I am still so bruised and it has been almost 5 weeks.  

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  • rockermom
    rockermom Member Posts: 15
    edited March 2010

    Hi Cakeisgreat--glad to hear from you i'm still saying those prayers hahahaha.

    hbrower-yes, i still have a lot of soreness where my clothes hit--i can't seem to use the cami it is worse but, i got a few larger shirts and pj's and that is the best i can do

    i'm still at about 50-60 cc's in 24 hr period so i still have all four drains looks like another week.

    hope you all enjoyed the cake talk to you soon

    hugs

    rockermom

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited March 2010

    Hi Ladies.  I don't need to be added to the list, but I wanted to let you all know that if any of you have any questions, feel free to ask.  I had a bilateral MX in October '09, simple on the right, modified radical on the left (cancer side) with node dissection, TE and power port at time of MX.  I complete my chemotherapy tomorrow (Toxotere and Carboplatin, along with Herceptin, 6 rounds, 18 weeks), and I will have my silicone implant transfer at the end of April, beginning of May.  Had 19 nodes removed, 1 positive.  Will have nipple reconstruction with tattooing after transfer.

    I wish you all luck and positive attitudes.  It's all downhill after the surgery.  The chemo, if you're having it, is never as bad as you imagine it, and you CAN do this.  Keep your mind busy with others things, and don't fall into a depression because of your situation.  I KNOW that it's a hard thing to accept.  You are losing so many things that define you as a woman, but you have to realize there are so many other things that make YOU, YOU!  Concentrate on getting well, not on the physical changes your body will go through.  And remember, after you do this, you can handle anything.  Listen to your body.  Sleep if you need it, and don't push yourself -- you will make yourself feel worse.

    My only advice right now:  When you go for your drain removal, just bite the bullet and drug yourself up.  If you have painkillers, take them.  If you don't, take 4 advil (talk to your doc, of course.)  But, it will take the edge off.  Some people have almost no sensation when they remove them (I didn't on the cancer side), but on the other side -- well, let's just say I wish I would have been on the Vicodin.  Don't be afraid to take your meds that make you feel better, even if that means you'll sleep for hours -- that's what your body needs.

    I know it seems like I'm rambling, but I didn't have a single person to tell me these things.  I am the first in my family, and they were all as lost as I was.  Oh, one more thing.  If you have children, especially young ones, try not to feel guilty about sleeping instead of spending time with them.  What's important is that you are getting well for them down the road, and when they're older, they'll understand why you were feeling so bad.  Children can be your biggest reason to forge on.

    Be strong.

    --Lisa

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  • cornellalum
    cornellalum Member Posts: 191
    edited March 2010

    Cakeisgreat - hooray!  You're back!  I know you feel like crap right now, but it will get better.

    Hey everyone - wasn't today cake day???  I had a big slice of chocolate cake after dinner.  If I was wrong about it being today, I will have another slice tomorrow, and every day thereafter until it is whatever day we decided to eat cake.  Just to be safe, you know.  Solidarity and all that.

    BTW - my infection is clearing up, slowly.  I still have a nurse coming in every day to pack it, but it is getting better.  I am hoping that in no more than a week, I will just have to bandage it, and not need packing anymore.  It is getting time for me to think about getting back to work.  I'm four weeks out now, and feeling much better.  I still get tired easily, and have the barbed wire feeling around my chest at the end of the day, but I feel more like myself every day.

    I'm thinking of all you, and praying that you are healing, and sending hugs to those of you who are continuing treatments.

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  • chalex
    chalex Member Posts: 131
    edited March 2010

    Hi Ladies,

    Hey Cake, Good to hear from you. I hope you improve everyday.

    Faith and hbowser- Thanks for explaing the tumour board to me. I have never heard that term before. I am not sure if they do that in the cancer centre I am going to. It is a teaching hospital so I suspect there would be discussion b/w surgery, oncology and radiation..... Very interesting and informative. Thanks again

    Laura-I am glad you got second opinions that seem to say the same thing regarding the surgery. I know it's tough to have more surgery. I will think happy thoughts for you.

    Chalex

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  • guardienangel
    guardienangel Member Posts: 26
    edited March 2010

    hey gang! how you all donig tonight.. I was a tad dissappointed today... i wasnt able to get my last drain out,, and! damn it... i also wasnt able to have a fill.. as i am stlll to swollen and bruised.. so a tad of a delay!!! but thats ok, cause i have had a couple of really rough days and nights... So tonight is gonna be a oxycodone night for me... When will i ever be able to sleeep,, and sleep on my side again.. ugggh

    CAKEISGREAT! - omg,, while you are in rough shape right now! i totally understand as most of us here do!!! it was so GREAT to see your words from you!!!! weither it be,, bleeep bleep bleep! we all understand and know how you are feeling.. big hugs.. coming.. and when you are up and to typing send us another note..

    hugs debbie

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  • Faith316
    Faith316 Member Posts: 2,431
    edited March 2010

    Morning all!   Seems to be lots going on with everybody.

    LauraM - so sorry you face another surgery on Monday, but we're gonna help you get through it.

    Debbie -- sorry you're still so uncomfortable.  If it makes you feel any better, you aren't the only one who can't yet sleep in a bed.  I am still in the recliner, too, and my surgery was Feb. 4.  Every few nights I try, but I end up going back to the recliner.

    Cornellalum - Yes, yesterday was chocolate day.  I had some, too!  But, hey -- we're all still recovering and you know that chocolate helps with recovery so I say more chocolate is in order and will do us all good!  (You know they say to eat a balanced diet, and since chocolate IS one of the food groups ...............  Wink)

    I *think* I have added everyone to our list who has asked, but if someone has posted and I have missed it, please let me know.  This thread is getting pretty long and I may have missed a post somewhere along the way.  If I did, I apologize.  Just give me a shout and I'll add you!

    Hope you all have a great day!

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  • toughtitties
    toughtitties Member Posts: 17
    edited March 2010

    At Hoag Hospital here in Newport Beach, each patients case is presented by their treating doctor (in my case my breast surgeon) to a room full of oncologists, pathologists, radiologists, plastic surgeons, nutritionists, counselors, patient coordinators etc... a host of multiple disciplines are present - other doctors also attend. My plastic surgeon was there and goes to most of them even when her patients are not being presented. The way it was explained to me is that it really is like a brain storming session with all these experts - more heads are better then one mentality. I also believe there is a Southern California tumor board where doctors from all over the region attend. The outcome of my tumor board meeting was that I should definitely have the oncotype dx test (which I did) and take Tamoxifen. But they all agreed that I didn't need to take it for five years because I do want to have another baby down the road if it is in God's plan. :) I hope so! 

    Oh and I was told that a PET scan can pick up mm sized tumors? Again... so much conflicting information out there! 

    Oh - it is a closed door session so patients are not allowed. Which is kind of a bummer. I would have loved to be there and ask my set of questions.  

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  • hbowser
    hbowser Member Posts: 253
    edited March 2010

    Good afternoon.  Lisa, thanks for stopping by to give your advice and support.  Congratulations on completing chemo today.  For me that day was emotional for me.  I was happy to have it over it with and onto the next step in my treatment. 

    Thank you all for responding to my question.  It is good to know that I am not the only one to have this continuing pain. 

    Sorry to hear that some of you still have drains in (but, better to have them in than out too early) and are in discomfort or down in the dumps.  Praying for better days soon.

    Well, I better get back to work; I will write more later.  BTW, I am in total agreement with Faith.  I will continue to eat chocolate until everyone had some.  :) 

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