June 2012 Mastectomy

Infobabe

I haave a question, do they always take nodes?  Is there a way to get out of that.  

I am planning on a mastectomy but I am Stage 0, Grade 1,ER/PR+.  No nodes with the lumpectomy.  Could I sign a waiver to get out of it because I think I don't need it and is a miserable addition.

LAstar

I'm sure you can make a good case for not taking nodes.  If you don't consent, they can't do it.  

Infobabe

 LAstar

You are Stage 0 also.  Did they take any nodes from you?   You show 0/0.  Does that mean none were taken?

LAstar

None were taken in my lumpectomy & re excision. I am having a bmx next week with snb on the side with dcis. I don't really want to, of course, but the dcis is high grade & widespread in my left breast. If anything invasive was found, I would want to know the status of the nodes.

Lynn27

I'm back and semi-cognitive.  Still keep fading out, I think my body holds onto narcotics for a pretty long time.  Perhaps good for pain control but makes it hard to be functional.

More update since my DD's post.  Choosing a prophylactic right MX was the right decision.  The path found LCIS. 

The great news, of course, is the SN was CLEAN!  The not-so-great news is that my left diagnosis is now IDC, not DCIS.  I'll meet with my BS on Tue to discuss oncotyping, MOs, and next steps (chemo and/or hormonal).

LAstar

Wow, Lynn27 -- you must feel so good about your choice of BMX!  Great news about the node!  I hope that the necessary treatment for the IDC is easy and effective.  Heal well!

beata44

Ok, I have a few questions for those of you who btdt.



1st: what is a BS- breast surgeon? I've seen it also referred as OS - oncology surgeon. Same thing?



2nd: for those who had oncotyping done, how long before you learn results?



3rd: when will I be able to shower? I thought I read somewhere showering with drains is impossible, but then other ladies say they showered pretty quickly. What's the deal on showering (I value my showers



Thanks. My BMX is on Wednesday and I feel like there is a brick on my chest. Maybe if I concentrate on these details, I can put my mind elsewhere

rhymeblue

June 8 - it's over. No breasts. I look like a mutilated androgynous boxer. Final path came back 1b node negative. 3 nodes removed on right side where DCIS and its invasive friend were cohabiting. Left breast removed prophylactically. Tamoxifen next - I'm 46 - 7 y.o. daughter. I've been taking Wellbutrin for years and now it looks like it interferes with Tamoxifen efficacy. Not great as it's the only antidepressant that I can take and Tamoxifen is supposed to make you depressed, right? One doc says i may still be able to take them both - thoughts anyone? So I'm healing pretty well still have 2 drains out of 4. But I'm an emotional wreck. I was terrified before the surgery, relieved given the node status, feeling good about the final path report. Then I made the mistake of looking through the recurrences topic on the boards and I'm terrified again. Please give me some tips about how to deal with all of these emotions! Fear, and now a new one is anger. What's that about? Thank you for all being here and sharing your bravery and feelings and experiences...

Ami1026

Hi Beata-

BS is Breast Surgeon, yes. On the shower, I was told that I could shower the day after I came home (so 2 days post surgery.) In fact, the nurses and BS told me I HAD to shower (I was threatening to put it off a day because I was scared to look.) It really wasn't bad.  They gave me a pouch that I could put the drain in and loop the strings around my neck to hold it up in the shower. They said to let the water run down over the incisions and everything, just don't get soap in them. I know what you mean about valuing showers, it felt good to be somewhat normal again.  Was even able to wash my hair and shave LOL!

Good luck with your surgery. I know how you feel, but it was such a relief when it was over. My thoughts will be with you!

 Ami

sandpiper1

Dear infobabe, I will not profess to any expertise regarding BC or choices made for surgical procedures. A clear discussion with your surgeon is of course always the way to go. Every physician has to explain the surgery/procedure and risks vs benefits prior to you consenting. I do not believe taking nodes is routine for a dx of DCIS purely because it is non-invasive. I would think that if your disease were more extensive or your dx changed to invasive then you would be looking at some type of node sampling. I will tell you my understanding from my experience. I too have a dx of DCIS. MRI indicates that the total area of involvement measures roughly 7.7 cm. Very extensive, especially in a little "B" sized gal.

Until I have my MX, we can not know if there is an invasive component or if this is just pure DCIS. That said we erred on the side of extreme caution. My BS (who is quite experienced and skilled in pre-mx SNB) suggested we do the procedure. His reasons were sound. Besides the extensive disease in my right breast we would have an idea ahead of time if there was any invasion to the sentinel nodes and he would know whether I would require a more comprehensive AND, which he would perform at the time of MX. This saved me from having a MX w/SNB then having to go back later and having a full AND if the sentinel nodes were positive. That would have required 2 trips to the OR under general anesthesia and more recovery time.

Doing it this way I was able to have my SNB as an out patient (conscious sedation rules!) and of course......

I am happy to say I have clear nodes!!!!

Even if we find an invasive component in the final surgical path, we know ahead of time that it did not travel.

I had a very positive experience. Except for the injection of the radioactive substance....ok that was uncomfortable. Not the needle but the actual injection. They quickly massaged it in and the pain subsided within a minute. By the time I got out of the OR, I was in PACU for an hour then back to same day surgery bed for my discharge (Eat, drink, pee)

I have tenderness around the SNB site. I also have a bum shoulder which lends to me having more discomfort when I have been laying down for long periods of time. My surgeon put an occlusive dressing around the site so I could take a shower. My incision is about 1 inch +. I peed blue from the dye for about 12 hours. Drank a ton of fluids. I went back to work last night and suffered some swelling as a result, but iced and elevated my arm and it subsided by the time I got up today. 

The worst part is that I have very sensitive skin. There is no adhesive that I can tolerate and now I have had a reaction to the operative cleanser that was used. I believe they used chlorhexidine (sp).

I took Vicodin the first day and alternated with motrin. I am now using 1 gm of tylenol 2x/day and 600mg motrin every 6-8hrs. I went to the playground with the kids and have walked daily since the procedure.

Just for laughs..................

Apparently after that fine cocktail for my sedation (Fentanyl, Propofol and Versed) I announced to the OR and my surgeon that I was a 'surgical virgin'!

Nurse for BS said he got the biggest kick out of that!

Infobabe

sandpiper1

Thanks for that summary.  

I notice as I have read probably thousands of posts, that nodes are always negative for DCIS.  I remember one woman (cant remember what stage she was) the doctor told her he would take 7 nodes.  Well, he took  22 and they were all negative.  Pisses me off.

I think you have to be very careful what you sign.  It is like giving them permission to do whatever they want. 

rhymeblue

Hi sandpiper - just a quick clarification - DCIS is rarely associated with node positive however in some cases where the tumor is large and the grade is high this is not the case. The MD Anderson site has some good content related to this issue...

curveball

@beata44, I was also OK'd to shower the day I removed the bandage, which was the day after I came home from the hospital, i.e. 2nd day after surgery. I had my followup appointment the day before yesterday (8 days after) and my surgeon said the skin should be healed together by now, and the tapes will come off by themselves with continued showers.

Yesterday I drove for the first time since surgery, but just on surface streets, not the freeway. My left shoulder is still somewhat stiff, and I am not confident I could do an emergency evasive maneuver at high speed. I had read on these forums to put a pillow under the seat belt and over the surgical site, and had been doing that while my mom was still driving me to appointments & stuff. In the driver's seat, the shoulder belt doesn't hit any tender spots, so no pillow is required.

The surgeon also said it is normal for there to be more pain the 2nd week after surgery due to inflammation, but so far mine is no worse. I'm still taking the ibuprofen, but more to see if it will reduce the swelling than for actual pain. I'd sure like to get rid of this drain! I'm still getting almost twice as much as the required level for removal so I guess it will be in for several more days. Anyway, there's no way to get it out over the weekend even output was down to the required level. Nice thing is, once it's time to remove, it's a same-day appointment.

curveball

@infobabe, is a sentinel node biopsy what is being suggested to you? If so, I can somewhat understand why. If I understand correctly, it's impossible to locate the sentinel node after mastectomy, so if you had the MX and path report later revealed that there was some invasive cancer either around where the lump was removed in May or elsewhere in your breast, at that point there'd be no way to check the nodes except to remove them all.

sandpiper1

Dearest infobabe.......we are charged with making tough decisions. I can only tell you that I am so thankful to have a BS who explains every little detail and gives me time to make informed decisions as to how I wish to proceed. It's amazing too that through his experience and quick analysis of the individual, he is able to tailor his approach in a way that is very unique to surgeons. Although we are doing some things outside of the DCIS norm, it is with great wisdom and understanding that I always have the option to say no. I remember the first visit to his office. I told him that a MX was much too drastic for a simple DX of DCIS. (what I didn't know then....LOL). He 'suggested' an MRI........gave me a suggestion for a PS (when that time came), suggested the SNB....etc etc.......The irony is my sissy is an oncology nurse (the reason I am with this amazing BS). She checks every piece of information with NCIS guidelines. I too, do my research. The nurse in the BS office is a long time friend of my sissys. Regardless of their relationship, she too, treats me as an individual and with the utmost respect. I have never been immeshed in the health care arena as much as I have been in the last 2 months. If I could make one wish, it would be that everyone could have the team I have. I was afraid of my initial procedure, sedation and the way I would be treated by hospital staff. I was pleasantly surprised and satisfied with my experience. I know I made good choices, even if I had the benefit of someone in the know. My gyne group e-mailed BS's on my behalf and were also making arrangments if I was not happy with my initial choice. I don't always know the questions to ask or how to respond. Don't be afraid to express concerns or ask questions. I am constantly learning. I have also learned to be more verbal in this time. It is, afterall, my body, my decisions and my unique situation that warrants attention.

TY rhyme for the info. I understand that pure DCIS is non-inavasive,. I guess I was trying to clarify why someone in my position would consider an SNB. Extent and grade weighed heavily in on that decision. It would make sense that SNB after mx would be extremely difficult due to possible changes in lymphatic pathways after mx , although I did read an interesting article from 2010 that MX may not be an absolute contraindication as once thought........anywho..........off my soapbox

curveball

@rhymeblue, have you thought of joining a support group to help you cope with those fears? That's an option available through my medical coverage, but even if yours doesn't include that, there may be a group near you sponsored by others, e.g.  the American Cancer Society or local cancer-related organizations. I've been to three meetings so far, and really found it helpful. I also talked with one of the priests at my church before my surgery, about weird thoughts I was having. (I am really going to ask for part of my body to be cut off, how crazy is that?) He really knew where I was coming from, as he is an amputee himself. Or you may be able to see a counselor or social worker either through your health coverage, or with some employers, through an employee assistance program. The doctor who prescribed the Welbutrin may also be able to suggest some resources to you. Hope that helps.

A second thought...have you looked into naturopathy at all? There are herbal remedies for depression/anxiety, and maybe some of them don't conflict with tamoxifen. I took one some years ago for anxiety, and it really worked for me.

Infobabe

 curveball

No one is suggesting anything right now.  I only decided last Thursday to cancel the 5 weeks of rads I was slated for.  The more I investigate this, the more overkill it is.  I should add, I am 76.

The American Cancer Society says sentinal node not neccessary for DCIS Mastectomy though some doctors do it.  I have to line up some more doctors.  My MO is on maternity leave, wouldn't you know.

I got off on the wrong foot.  I went by recommendations of my prim who I love.  But she had me going to individual doctors she has a high oinion of.  This would be great but now I think I would have been better off going to the breast cancer center in our hospital.  The have board certified surgeons for BC and all the diciplines, speak to each other.  Also, they are in partneship with Mayo Bros.  

I am a little fragmented right now. 

NanG

i am now in the countdown....32 hours before my surgery. oh-my-WORD! i am so so sososososososososoosososooooooososososososossoosoooooooo nervous.

to help with nerves today, i cleaned the whole house from top to bottom with the help of a few friends, than went shopping for satin pj bottoms to slide outta that hospital bed nice n slick....and tank tops i can step into...etc.  I also bought a nice box of diabetic cirulatory socks that are really soft n cute. pink n white.  so that while i am in the hospital, my feet dont get cold. 

i also...bought....an epilator!  okay, i dunno if anyone else out there has done this, but ouch.  i like it though.  i can't wax because i have sensitive skin, and last time i waxed it was pure agony for like the next two weeks.  i was itching like mad. it was sad.  ;o(

so i thought epilating my underarms would be a good idea....so far so good, but with all the issues surrounding lymph node biopsy, and i am having snb on both sides....i was wondering is that a risk associated with lymphedema?  anyone...

LAstar

My BS said not to shave for 3 days prior to my lumpectomy.  I'm not shaving before surgery, but I live in western Oregon where no one does anyway!  I think it's more of a risk of infection from a cut.  Best wishes!!!  

jenlee

Just wanted to check in again, now that my surgery is done. From the day I was diagnosed, I wanted to be rid of my breasts. My chemo was very successful, so they suggested that I do lumpectomy & radiation after, but I chose to go ahead with the BMX. In the days before, I became extraordinarily anxious and wondered if I was doing the right thing. I almost cancelled the surgery several times, but was slightly nudged in the right direction by my husband and several of the women here. Now I'm about 1.5 weeks post surgery and am very glad that I made the decisions I did. I had some painful early days, but the worst is behind me. Healing thoughts to all of you and best wishes to those with upcoming surgeries.

Lynn27

DCIS and SNB - I think this was covered in several posts, but I'll add my two bits.  Technically, DCIS can't get into the nodes because it is "IS" - in situ, still encapsulated and hasn't spread (ditto LCIS).  However, if your biopsy showed  a high grade DCIS the BS may want to do an SNB as a safety check to see if spreading has occurred (you actually have an additional form of cancer). 

An SNB can be performed a short time before your surgery or as part of your surgery.  With SNB, only the sentinel nodes are removed.  You and your surgeon should discuss what s/he recommends be done if the sentinel node(s) comes back "dirty" in the frozen section path report (the path report performed while you are still in surgery - it takes about 15 min).  If the SNB is done before surgery, you'll have a fixed section path report, which is more reliable, before surgery begins.  I'm not a BS or MO and I'm tainted because my BS is one of the folks who did the research to develop SNB as a less invasive diagnostic tool, but there's no way on earth I would have allowed any BS to randomly guess which and how many of my lymph nodes to take.  That's 1950's medicine:  there's a reason why lymphedema isn't as much of a problem as it used to be.  I'm pleased to hear there's research into node mapping post-mastectomy.  Folks have thought that you couldn't map after a mastectomy because the normal operation of the breast has been disrupted (after all, the breast isn't there any more).  Unless the research is a lot farther along than I understand it to be, I wouldn't count on it as a reliable tool quite yet and would not put off having an SNB. 

Why am I posting so adamently?  I went into surgery with high grade DCIS and came out with IDC.  If I didn't have the SNB report that it was clean, neither I nor any doc would know whether that missed-on-every-mammogram tumor had spread further. 

JenH13

NanG- I am with you!  Surgery tomorrow. I did ok up until last night. Then i dreamed about it, woke up thinking about it.. am so incrediably nervous.  Have to find something to do today to keep my mind off it as much as possible or I will go crazy!

Thoughts and prayers with everyone going tomorrow!

faithhopenluv

Thinking of those going into surgery tomorrow. Hope you can find a way to relax and enjoy today.



I'll echo what the other ladies have said, you will feel better once it's done and you can focus on healing.



I'm still feeling very good, my legs have a duller but more persistent pain. But I'm sure that means it's healing. My two drains have slowed down a lot. One is barely out putting anything. Don't want to get my hopes up too high, but it will be great if they come out tomorrow at my followup apt.

Infobabe

 NanG

Are you sure they are taking nodes?  Sounds like you are.  How necessary is that with DCIS grade 2?

Infobabe

 Lynn27

" I'm pleased to hear there's research into node mapping post-mastectomy.  Folks have thought that you couldn't map after a mastectomy because the normal operation of the breast has been disrupted (after all, the breast isn't there any more)."

I had been wondering about that.  I have seen my own digital mammogram and the nodes are clearly visible. 

As I have read thousands of these posts, not one DCIS has had a positive node. 

I find that very interesting.  I am likely headed for a UMX.  But I have Grade 0, Grade 1.  I am going to insist that they take no nodes.  Might have to shop for a surgeon.

my3sunz42

For those June Bug ladies with surgery scheduled tomorrow please know I'm thinking about you and wishing you an enjoyable, anxiety free day. My surgery was last Monday ... I know how rough the final countdown can be, but I will repeat what every other post surgery gal has said ... the waiting is FAR HARDER than the surgery. Do something special for yourself today, enjoy a couple of wonderful meals and start making plans for your new, better normal ... trust me gals, it's great on this side of the surgery :-) 

I have my follow up appt with PS tomorrow ... looking forward to an all clear on the healing process and perhaps some hope for removal of 1 or 2 of my 4 drains (however, I'm in no rush on the drain removal ... I'd much rather this junk get out of my body via drains. And trust me, the drains really aren't that bad). 

Cheers ladies ... together we are stronger! 

loriio

My3sunz42- so glad you're doing well. Same for all of you who have gone before. I love the name June Bugs.

Best wishes for all of those coming up this week. I have a list inside my devotional and I pray every morning.

I am still over a week away and anxiety is starting to build. I will get MRI results this week. (probably Wednesday). I also have pre-op on Wednesday. I am nervous but I'm really ready to get the show on the road.

Again prayers and best wishes to all my fellow June Bugs!

rhymeblue

Thank you curveball for your suggestions. There's not much organized support in Ames though more in Des Moines. Alas I can't drive yet I have some friends who have been through this and one with stage 4 (I used to do mehndi for her head after her chemo treatments.) They help me a lot. Just nice to connect with all of you too. I wasn't prepared for the anger part of this - sadness, fear - yes...but was just wondering if anyone else had a similar experience feeling anger after their mastectomy (not the woe is me kind, more like the I want to break a lot of plates kind).

rhymeblue

loriio - the waiting is the hardest part. Hang in there - I'm thinking of you...

7of9

Hi ladies...sorry been off the board all week. We buried my dear father and friend on Friday.     Yes, I know like it wasn't a shitty enough spring...my only comfort is we did a big family vacation a week before my surgery and had a blast. He was also over my house for a small get together the night before his heart attack and it was 8 days after my surgery. He knew I was going to be just fine. Lonely and scared for my mother...but what the hell can we do about these curve balls life throws at us?

Ryhmeblue: hang in there sister....my chest looks the same way but we are in the phoenix stage now...time to rise up clean and cured from the ashes. My son is going to be 3 in a few weeks....you are doing and did all you can to raise your daughter. Good job MOM!!! She is or I'm sure as she grows up is going to be so very very very proud of you.

I have to go troll around on some of the other topics and start combing for some advice on birth control...condoms just aren't safe enough for me and obviously with ER+ birth control pills are out. We would have welcomed another baby but weren't planning on anymore so permanent options are on the table but of course damned husband hasn't volunteered a V yet. I'm actually a little pissed at him....then again our insurances are separte and I've hit my deductable of course so I need to see what I can do. Maybe time something with my exchange surgery in 2 - 3 months?

For those of you still waiting...the TEs aren't too bad. 2 weeks and 2 days out no pain meds what so ever. Drains came out at 4 days (thank you God...really needed and appreciated the low end on those) A little wierd, sometimes feel snug but I love to feel no more damn lump and I think as flat as I am, I'm probably still an A cup and just look "athletic". I don't know if I'll go back to a full C or not...fills starting this Wednesday....