June 2012 Mastectomy

@25weeks:  I asked that very same question.  I too thought that was the purpose of chemo.  Apparently, the bad cells get caught in the nodes.  The current school of thought, from my center, is to get out the stray cells that has the potential to create mets.  The chemo is systemic - through the bloodstream.  The micros have surfaced in research and studies because the testing has become more precise than it was 10/15 years ago.  But, some surgeons do not know what to do with this new found information.  Its a very gray area.  The analysis of one doctor went something like this:  If you bake a 10" cake and drop one raisin into that cake and cut it into 4 pieces, what is the percentage you are going to find that one raisin?  Now, if you cut that same cake 200 times, now what is the percentage you are going to find that one raisin?  I will PM my research --

@25weeks, both my surgeon and oncologist said I don't need RT, much to my relief. I have dozens of little birthmarks all over my torso and although all the doctors I asked about it prior to surgery said radiation wouldn't affect them or cause them to become cancerous, I would have worried about them. As it turned out I had enough clear margin that radiation was not necessary. As far as I know yet, chemo (maybe) followed by hormone tx is what my regimen will be.

I had an appointment with Dr F (onc) last week to sign the consent form for the study I'm joining, and he put my info into a site called Adjuvant!online. Unfortunately I forgot to take my printout with me when I left, but as I remember, my recurrence risk was 17% with surgery only, adding hormone therapy cut it about in half, and chemo on top of that would reduce it to around 5% or maybe lower. I don't remember for sure if he also looked at the stats with radiation, but I think not. 

I would be very interested to know the statistics, if there are any, on how often cancer is found in other nodes when there is one micromet in the sentinel. Alas, as I understand it, treatment when there are 1-3 positive nodes is a gray area, treatment when there are micromets or isolated tumor cells in the nodes is a gray area, and use of the Oncotype with anything other than clear nodes is a gray area.

I've just been reading the patient's version of the NCCN treatment guideline for breast cancer, and it would have both of us getting ALND ("If results suggest that cancer is in the lymph nodes, a complete axillary dissection is usually done.")  And, it says to "strongly consider" radiation, even after MX. Only if the tumor is under 5 cm, all nodes are clear, and the margins are wide and clean does the guideline give a "No radiation" recommendation. On the other hand, I signed up for the customized research article feature here, and just yesterday I got this article:  No Difference in Prognosis with Sentinel Node Biopsy Versus Axillary Node Biopsy. I'm not sure whether this applies to either surgery or LX only. Maybe this (treatment of women with micromets) is an area where the standard of care is changing, sort of like the change some years ago from radical mastectomy to modified radical as the standard surgery, then the realization even later that LX + RT had the same survival rate, or the development of sentinel node biopsy more recently than that. 

I don't know what to suggest, other than asking more questions until you are satisfied you have enough information to make a good decision. I think it's on another thread that someone wrote, "make the decision you won't regret, no matter what the outcome is." If you have the ALND, and the rest of your nodes are clear, will you be reassured, or mad that you let yourself be talked into more surgery that turned out to be unnecessary? If you don't have the ALND and it turns out there was cancer in other nodes that causes a recurrence, will you beat yourself up for not having had the nodes removed when you had the chance? In a gray area like we're in, that may be the best way to decide. 

It would really help if you could pour that rum down your throat, followed by the brandy and get a good healing result lol.

Before I kvetch about my situation, let me just say that I wish each of you peace and healing, regardless of what decisions you make. This disease sucks big time. We don't deserve it but who does? I am sending thoughts and prayers to you all.

Now for my rant. I am so unhappy. I should be thankful in a way. My pathology report shows no cancer. My sentinel node was clear. So why so unhappy? Well, the original surg was on 6/7 and it went perfectly well. Went home from hosp 6/9, felt okay. On 6/14 got one drain removed but on 6/15 out of the blue I started swelling up, very painful, up to my neck. Went to emergency and had emergency surgery for a hematoma, had 2nd drain put back in, had TE removed ... blood pressure was down to 81/54...I believe in my heart of hearts I was somewhere on the edge.... Anyway,the great surgeon pulled me through. BUT 6/19 in the hosp, I started pouring blood out of my drains (2) and underarms.  Back to emergency surgery again but this time, after, in recovery, I was just no good. Really really sick. Went to Intensive Care and he scheduled ANOTHER surgery for the next day. During these days I had 11 pints of blood, 2 of platelets and 1 plasma. They could no longer find veins so the surgeon had to put an order in allowing them to use the arm where I had the surgery (waiting for LE, praying not)....Anyway, it is 7/6 - yesterday was 4 weeks from original surg. I am oozing blood from my original cut... I feel like one of the drains might be infected as it smells horrible. I know the longer in, the more painful to come out. And I no longer have TE for reconstruction so don't even know what will happen with that.

I am so sorry. I just needed to vent. I want the drains out. I want to play with my 6 month old twin grandkids. I want to feel better. If this sounds whiney or self pitying, I am sorry. I am just sad, going into my 5th week after what appeared to be a perfect surg.

Peace and love to all

Bev 

@Nan G: Those PJs you're talking about?, we call that a moo-moo & that's EXACTLY what I described to hubby as what would be most comfy rt now!

@Tracy: I am so sympathetic to you right now, our kids are close to the same ages & that just sucks. What about a 2nd opinion?  I'll def be praying that God gives you some clarification & wisdom for your decision.

We can do this girls! Think PINK!

I'M CANCER FREEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I only had DCIS!!! 9cm from the surgery! There was nothing in my nodes, no microinvasion, nothing invasive that they thought they saw and nothing in the left breast!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

She said she took out the initial 8cm and there was some left, so they did a second cut and she got clear margins by over 1cm!

PRAISE BE TO THE LORD JESUS CHRIST! I seriously cannot fathom His goodness and mercy!!

I cried and hugged my surgeon and thanked her for becoming a doctor. LOL!

they said no chemo, no rads, no nothing.  im scheduled for follow up in six months.!!!

Good Afternoon Everyone -

My name is Emily and I am 31 years old. I just joined the chat boards in search of some support during my breats cancer journey. I was diagnosed May 24, 2012 Stage I IDC and underwent a double mastectomy with tissue expander placement on June 20th. Through lymph node mapping the surgeon found traces in one sentinel node but fortunately no traces in the ten axillary nodes that were removed. I hope there is room for one more in this group!

Hi ladies ...i had a masectomy with all lymph nodes removed ..can you tell me how long the drain should have been left in for? I had op Wednesday morning..and drain removed Friday lunchtime and there was still plenty coming out!

Dulcie xxxx

Iggy - PLEASE be careful. I had a similar situation. 8 days after surgery my chest blew up, swelling pressing on my clavicle bone even. The pain was unbearable. Went to emergency where surgeon performed emergency surgery. They took out 1,000 cc's of blood and my blood pressure went down to 84/51. I think I was almost done for. While in the hospital 3 days later, I swelled again and my surgery side turned hard as a rock and I started hemmoraghing from drains and holes in underarm and had another emergency surgery. During that week I had 11 pints of blood, 2 units of platelets and 1of plasma. I am home now, recovering, but my drains are still putting out 60/70 for one and about 90 for the other so they are not coming out yet. I am also oozing blood from my surgical scar. Doc says the old hematoma blood is just coming out any way it can. I am NOT trying to scare you. Just telling you please don't sit back and wait. If you swell and have terrible pain, it could be something like what I had and I know had I not gone to the hospital, I'd not be here. I realize 140 cc's is not 1,000 (plus 700 after surg) but it could be the start of something. Please watch it and hopefully it's nothing serious and hopefully you'll feel better soon.

i think i posted this earlier but want to re-ask....



my ps put in my TE and at my first fill admitted that he put one in too high, remarking to his residents that he was paranoid because hes had a few girls come back with perforated TE...something to that effect. my question is, does anyone else have discomfort with TE? my left TE doesn't hurt in the mildest...THAT IS THE ONE THAT WAS GREEN!!! however my right one is quite sore all the time it seems like. he said it would be sore...he said that was why...and its VERY sore. like i did a major tear to the muscle...im right now at 410cc, which has stillleft me quite flat. i think i must have an enormous frame, because he wants me to go to 800cc which ive shared before.



what are u girls taking for pain for your expansions? are u taking anything? anyone else have te that are just in a bad place? honestly my left one i forget is even in there. however the right side is the side i had the snb on so im wondering if maybe the pain on that side is just because its a little more healing required on that side? that and i think maybe the surgeon had to do more work on the right bc that was the cancer side? i dunno.



also....does anyone else with TE feel like they are compulsively standing with ballerina posture? i get tired holding myself up!

Hi guys,

I haven't posted in a few days.  Went to my PS today and he only pulled out some fluid from my left breast.  He wants me to heal more in my nipple area (which is looking pretty good, some crust needs to fall off) before he begins expanding the Monday after next.  I am nervous I won't be able to handle much in terms of breast size.  I was very small to begin with- with the fluid buildup I was about my normal size, now I"m a little smaller.  I do feel the implants and discomfort, esp every time I sit up in bed in the morning.  But I'm getting used to it.  I do hope the discomfort goes away soon! 

Welcome Dulcie! I think you are the first UK Junebug. I got to study at the U of Bath for a year and would like to go back to the UK some time. My great-grandmother was from Devon--I wonder if the house she lived in is still there.

There seems to be a huge variety in how long drains are left in. Some surgeons leave them in until the drainage is below some limit (which also varies) no matter how long that takes; others take them out after a certain time to avoid danger of infection even if there is still a lot of drainage. Since your drain was removed so soon after surgery, it might be a good idea to check occasionally to see if fluid is collecting in the surgical area. If it is, you can see it sloshing around under your skin...my surgeon described it as a "waterbed" appearance. I needed to have additional fluid removed a few days after my drain was taken out. It was quick and painless.

NanG-

I can't believe they won't give you any muscle relaxers. I can't stand to take the Norco or Vicodin. Makes me feel too weird. Both my GP and my PS gave me scripts for Valium. Hang in there. I hear ya about not being able to scratch in places or shower as easily. Forget washing my upper back. Everything is just 10x harder than it used to be. Those final implants better be worth the wait, because I'm already tired of the lack of mobility & comfort. Here's hoping the physical therapy helps!

Have a great weekend,

Tricia