March 2017 Surgery

2FUN

Remember the job of the PS is to have you look so good that you refer your friends and family!

I'm getting ready to go back to work, and I am so not excited. I've been out since early jan. Argh. Oh well, gotta pay the bills!

Sitti

2FUN good luck heading back to work. Take it easy and don't over do it.

LisabethS don't know how accurate it is but my PS said I'd be numb for two years. Maybe that's if one is indeed going to get feeling back. I guess it's a wait and see thing. Hope you PS is having better bedside manners these days. Is the seroma under your arm where you were describing? Glad your infection is healing!

Haven't heard alot lately, hope everyone is healing and feeling better. Hugs to all.

carmstr835

Hi everyone. I have pretty much recovered from my surgery. Thank you for the well wishes and support. Bilateral mastectomy left was simple but right was modified radical. I wear a compression sleeve on my right arm when I am awake, and supposed to keep it elevated when I sleep to ward off lymphodemia. I don't always succeed with that, I wake up in some rather weird positions lately. I also wear a warning not to use that arm for medical procedures, not even blood pressure.

I still have the stitches in, but no longer wearing the breast binder or bandaging. I go back to see the surgeon on May 1st.

That is my issue. I was told I would need chemo when I returned, and radiation after that. Now, on the basis of the Oncotype score of 19 both breasts same score. They no longer believe I need chemo. My oncologist called this a low to intermediate risk of occurrence or metastasizing. He said the chemo will only give me a 5% advantage, and not worth the risks and side effects. Those 5 people out of 100 would probable disagree with him, in my opinion. He said we will talk about it at my appointment on May 2.

Also changed several the cancer characteristics from the biopsy to the surgery pathology:

March 13 Biopsy Rt breast Er+; Pr+ ;HER2Positive(FISH); Ri-67 15-20%

March 28 Surgical Rt breast Er+; Pr-; HER2Negative(not FISH,IHC); Ri-67 low

March 13 Biopsy Lt breast Er+;Pr+ HER2 Negative(FISH); Ri-67 1-5%

March 28 Surgical Lt breast Er+;Pr+ HER2Equivical(FISH pending); Ri-67 low

The original size of the tumors when they did the ultrasound guided needle core biopsy wasn't very big 1.2 x 1.4 x1 cm and with 6 passes through each tumor, it doesnt leave much intact to biopsy for the surgery. I would assume the needle core would be more accurate, but I am not a pathologist.

Also, there was sentinal lymph involvement on the right side. The tumor in the lymph was 2.6 cm and extranodal extension, meaning it burst out of the lymph node. They removed all the level 1 and level 2 nodes and 2/15 were positive on the right, they removed 3 sentinal lymphnodes and all 3 were clear on the left side.

I have read some information on Oncotype that it isn't accurate where lymphnodes are concerned. Then I read that if 1-3 lymph are involved it is still accurate. But what about the fact it burst ope the lymph and assuming it is now in the lymph system. How could both breasts have the same oncotype score when only one was in the lymphnodes.

The Her2 score that was Positive with a FISH, then negative with the less accurate IHC . The left breast is still pending for FISH, but that has been since April 11.

I am afraid I am becoming a number, and if they are comparing apples to oranges to decide my treatment, I am scared.

I also read that mammoprint is more accurate than oncotype. An intermediate score in oncotype comes back sometimes as high risk in a mammoprint score, or it could come back as low risk. but they say there is no correlation between the number if it is identified as an oncotype intermediate score. They have had oncotype scores of 18-19 come back as high risk in a mammoprint, and they have had an oncotype score of 24 come back as low risk in a mammoprint.

Anyone else have these issues? I have called another cancer treatment center for a second opinion, but they don't have anything for 3 weeks. I also heard that if you don't have chemo withing 4 weeks of your surgery, and you need it, your survivability drops by 10% each month you delay.

I guess what I need to know, is did anyone else's pathology change so drastically after surgery? and anyone not have chemotherapy when there was extranodal extension? One more question, I am taking arimidex and have been since March 22. My cholesterol jumped up 74 points and now my primary care physician wants me on statins. Anyone else have cholestrol problems with arimidex?

lovepugs77

Drain is gone! My surgeon wasn't too worried about the bruising. He thought some of it might be fluids collecting from both surgeries.

Great news: he removed 19 more nodes last week, and they were all negative! I have an appt with my MO on Wednesday to determine next steps.

2FUN

carmstr, I'm sorry you have all these numbers to worry about. I'm sorry I can't help you, but hopefully someone will be by soon with some information. Sending you hugs!

Sitti

carmstr, can your primary care Dr refer you some where for a second opinion and possibly get you in quicker? Or is there a tumor board at your hospital? Or do you have a nurse navigator that can give you some help/direction? Sorry you are having to sort through so much information.

Lovepugs Such good news on the negative nodes and drains gone, so happy for you!

Molly50

carmstr, I agree that you need a second opinion. I am not sure I would feel comfortable with extra nodal extension and no chemo either. You can also tell your MO you want chemo. You do get a vote in this.

Whoever asked about BS follow up. I saw mine every 4 months the first year and now every 6 months. I do not see my RO. I still see MO every 4 months.

LisbethS

Hi carmstr835,

I am glad you are recovering well from your surgery.

I would contact your BS and have them call and get you into another MO immediately. If you call yourself, they can take forever to get you in but if your BS or gyn calls them, they should get you in right away.

I don't know enough to help you much.

I thought your OncotypeDX score of 19 was in the gray area and left up to you to decide about chemo.

My MO wouldn't order my OncotypeDX test until the path report came back from my MX on my lymph nodes because if they were positive, we would do chemo regardless of the OncotypeDX so the test would have been irrelevant. That's what my MO told me. So I'm not sure why they are basing their decision on OncotypeDX rather than your positive nodes. But maybe I'm not understanding what you are writing about your lymph nodes.

I'm not on an AI yet, they said I wouldn't go on estrogen lowering meds until I was done with chemo and surgery. I was supposed to find out last Friday, but my appointment was cancelled, so next week I should find out.

I think it said on my path report that HER2 Staus can change at any time or something like that. I figured they were just covering there butts.

Anyway, I would definitely get a second opinion.

Wish I could be more help. Let us know what happens. Sending loving, healing thoughts your way and hoping you get another MO soon or this gets straightened out with your MO. Be a squeaky wheel, we have to fight and be our own advocates in this crazy world of cancer.

2FUN

My MO said the same thing about Oncotyping as what Lisbeth said. I'd have someone on your team get me into another MO. in the BC world people get second and third opinions all the time.

carmstr835

No my primary care physician is VA doctor, and they can't refer outside the VA. I had a terrible time getting a second opinion on a radiology report back on March 1st when I wanted an exscional biopsy instead of a needle core, The places I wanted to go for treatment needed a physicians referral, not however my insurance company, but the medical facilities. I gave in on March 13 and let them do the needle core, since I could not get treatment otherwise and it had grown .2 centimeters in just 13 days and also found a second tumor in my other breast.. At least prior to the biopsy, it was not palpable, and not clinically found prior to the biopsy through the ultra sounds, they stated no lymph node involvement and all with in 10 days after the biopsies, it was palpable and visible on the scans and identified as probable cancerous in the lymph-nodes, by the time of surgery it was extra-nodal and 2.6 centimeters with necrosis and granduloma within the lymph-node.

Now that I have had a bilateral mastectomy, they no longer need a referral from a physician. They will call me Tuesday and if my records deem it necessary to be seen sooner, they will try to fit me in sooner. I feel like a number...

2FUN

if you are having problems with the VA call your congressman/ senator. It will get thru faster. Or call your local news outlet/TV station. Around here they do a good job of bringing to light the faults of the system.

carmstr835

I am not unhappy with VA. I chose not to use VA (I also have blue cross) to treat my cancer, but the VA Dr, is my primary care physician and I really like her. She has all my breast cancer info, but she is just my primary care and does stuff like physicals, cholesterol stuff, and she took out my chest tubes when they were ready because it is a very long way (8 hours driving) for me to see my breast cancer surgeon. I will go back to see the surgeon next week, May 1st.

The issue I had before I chose a breast surgeon was they wanted a physician's referral and my VA doc could not do that, unless I wanted VA to handle my cancer and I did not, I was worried about the time it takes to get appointments and decided to use my blue cross and pay the deductibles and co pays because of the availability to easily choose my own dr.s.

Actually, I credit VA with finding my cancer, in a sense, they ordered the mammogram and it wasn't really due again for another year. My prior hospital does it only every other year. VA every year.

Scottiemom11

Lisbeth. . .I saw my BS every 3 months for the first year then graduated to every six months. They check for any signs of recurrence. Good news I n the infection clearing up. I do have some feeling in both foobs which gradually developed over the past 2+ years since BMx. As for side sleeping, I still sleep mostly on my back but with a total body pillow for support. That pillow allows me to curl up partially on either side. I keep hoping that someday I'll be able to side sleep again like I always did before.

Raven my original PS said she could only guarantee sisters, not twins. My current PS did a good job of giving me close to twins. Hang in there.

Scottie

LisbethS

lovespugs, yay yay yay on negative nodes!!!! And getting your drains out!

LisbethS

Ok, stupid question. At my first MX (rt breast), they removed one lymph node, the sentinel node. My BS didn't give me any exercises and no information about lymphedema--never told me about it, no hand-outs, no exercises, nothing. I didn't even know it existed until I saw a pamphlet at the wig/breast prosthetic store. Then I started noticing people talking about it on these forums, but was busy researching my upcoming chemo so didn't pay much attention to it.

Now I keep seeing more and more alarming things about lymphedema and info like wearing a sleeve when flying, etc. I did know, from the pamphlet and my chemo group, to tell the hospital etc. to not take blood or blood pressure from my right arm, thank goodness.

But i haven't done anything else about it, like measure my arm, or watch for warning signs, or exercises, etc. My compression bra from my recent MX/Recon surgery was causing pain and numbness in my right arm so I did buy a larger sized bra and that stopped the pain and numbness. But I do continue to have off and on pain in my right side armpit that I have had since my first MX. The pain is mild, just bothersome. I have a new BS that did my second MX but no nodes were removed and I don't want to contact my old BS since I left her...

So my question is, do you think I should do something in regards to lymphedema now? My MX with node removal was back in July. I only had one node removed but everything I read says it only takes one node... It's just one of those things I put on the back burner that has been nagging at me. There probably is a lymphedema forum/group so maybe I'll look for that and post there but just wondering how you ladies learned about it and what you're doing to prevent it.

Gentle hugs to all!

2FUN

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LisbethS, LE is one of those things that there is a lot of new information coming out. When I first started in my PT practice 30 years ago, insurance wouldn't cover it b/c it didn't exist ( in their minds!)

Anyone can get lymphedema. You don't need nodes removed to get it. We are at greater risk having had MX or LX. I am at greater risk for having leg lymphedema having had hysterectomy with nodes removed. There is always mild asymmetry between the circumference of limbs. If you think you may be getting symptoms talk to your dr, or if you are in a state where you have direct access to physical therapy , find out who is skilled in LE, and go in for a baseline and education/exercises. When you start reading all the info it can be overwhelming. Higs!

raven4mi

LisbethS, I had only one sentinel node removed on the right side as well and I don't worry about lymphedema at all. I will even allow blood draws, etc. on the right side. The general consensus I've gathered from speaking to various medical personnel through this entire trip is that unless you have several nodes removed then lymphedema is not typical. And with only one the chances are extremely small, somewhere around 6% (I'm sure you can find good info if you google it.) The hospital will still make me wear the warning bracelet in an abundance of caution but I've had a couple of blood draws and IV Vitamin C on that side with no issues at all. That's not to say I'll never have a problem but at this point I have to pick my battles and worrying about something that likely won't happen isn't worth my brain effort.

I'm back yet again from seeing PS today. They drained another 60 ccs and filled with another 50 ccs of saline to take up the space. All this draining is freaking me out as it's just another opportunity for infection. Why on earth my body produces so much drainage seems to be a mystery for the ages. Prelim results on culture they took last Thursday are still negative but he's putting me back on abx in an abundance of caution. I go back in again on Thursday then he leaves for a conference so it may be more than a week until I go back after that unless he wants me to see his partner while he's gone as a precaution. I'm now at 500 ccs on the way to 750. Slow and steady wins the race.

LAW193

I had 4 nodes removed and was told there was only a 2% chance of lymphedema and that I don't need to worry about it.

My mom had a radical mastectomy with every lymph node removed 41 years ago and was told to never get blood drawn or blood pressure or even to wear a watch on her surgery side. She has followed those instructions and has never had lymphedema, so even with a lot of nodes removed, you are not doomed to get it, you just have to watch out for it. She probably isn't even at risk now after 41 years but she still is cautious just in case, although she has never worn a compression sleeve when flying - she wasn't told to do that in 1976 so she didn't know about it.

Scottiemom11

Lisbeth. . .you might ask this question on the Lymphedema Board. Great advice there. Also ask you current BS.

Hugs,

Scottie

Dafne

Hi again to all of you girls!

Been reading your news and waiting for my second fill and talking with my BS

Tappermom383, congrats on the clear nodes and great margins!

Raven SO glad for you being drain free, and lovepugs yeah for your great node outcome and the drain too

Sjsparks I'm 4 weeks out of bil mastectomy with tissue exp and still can't sleep completely flat on my back, but I can lay lower with each passing day. It's a progress. Same goes for side sleeping. It's very difficult still, but with the help of pillows I can short of lay on my side. Not for a long while though.

2FUN good luck on heading back to work!

LisbethS thank you so much for your advice on Nucynta (tapentadol). I researched it online and we have it here. So today it was my appointment with the PS to have my second fill.

My doc was not present today, cause he was having an eye surgery himself, so a young lady doctor was at his place. I knew her from the time I had my surgery, she is on his team, so she was the one giving me the fill today. Somehow I felt better, thinking that her being a young woman, (early 30s), would probably be more sympathetic and willing to work with me regarding my pain issues, so I told her about the drug you mentioned.

Unfortunately, she refused to prescribe it She said it's an opioid (which it is) and the protocol line they follow here is not to prescribe these kind of drugs on what she feels is a "moderate" kind of pain (moderate my ass!) and then went on using the same shit "why don't you try two tylenol or brufen at a time". HELLO lady, I've been telling you I'm on muscle relaxers that already stopped working so good, so why don't you give me something stronger, and you are telling me this?

When I told her that a warm shower helps me relax for abt an hour but then my pec gives me the worst kind of pain as it seems to spasm and contract she said "Are you sure? In my opinion, it's only in your mind". Excuse me? (by the way, does any of you experience the same? )

Finally I told her again and again that I did not want her to infuse more than 50 mls on each expander this time, as I think it's one of the reasons I'm experiencing so much pain. At first, my PS had told me we would go on with the first fill at about 5-6 weeks after the mastectomy, but here I am, just at the start of my 4th week and already at my 2nd fill. My first one was 10 days after surgery. Her answer? "Come on, don't be such a baby". And she went on filling me with 100 cc's. Grrr! So much for female compassion!

I'm so frustrated guys...!

raven4mi

Whoa, Dafne, I'm so sorry you're having such a horrible experience with the pain and the fills. And what the hell kind of responses are "Are you sure" and "it's only in your mind"?? How completely unprofessional. Thank God she is not your "regular" PS - is he more compassionate at least? I realize that because I'm in a large metropolitan area that I'm very lucky in that there are a lot of choices in health care and I've said it before and I'll say it again - I've "fired" doctors for much less. I realize not everyone has my choices, however. I hope that your regular PS is more sympathetic to your pain when he gets back. She and I would definitely have had words about that non-response and her unprofessional attitude. ~gentle hugs~

Molly50

Oh my goodness, Dafne, I am so sorry. What a rude, uncaring doctor!! I know exactly what you are describing except I was lucky that fills actually helped ease the spasms.

lovepugs77

Dafne, I am so sorry for the pain and the lack of compassion from the doctors.

Scottiemom11

Dafne. . .so sorry you are still having to deal with the pain and doctor's attitudes. With regard to fils benadamant and refuse more. I could not tolerate more that 50 at a time and I stopped at 300 ml because my pecs said no more. Hugs.

Scottie

2FUN

sending you a hug dafne!

LisbethS

Dafne I'm so sorry about your horrid experience, makes me want to punch her in the nose then say: oh stop being such a baby! Grrrr

Raven, maybe as your fills fill in the space, you'll stop producing so much fluid as there will be less and less area for fluid to collect. Maybe you already said that? I asked my PS last week if there was anything I could do about my seroma/fluid and he said compression is the only thing. That was the same advice I got from both my BSs too. I'm going to do meditation/visualization of my body reabsorbing the fluid. I sure don't want my PS draining mine. I don't trust his sterilization practices which were completely inferior compared to my BSs sterilizationpractices on my first MX seromas.

Thanks for all the info on lymphedema, makes me less worried. I think I'll measure just to have a baseline then just continue with no draws, or blood pressure on that arm but not worry about any other precautions unless I get symptoms. One less thing to worry about, for once.

I went to my MO today (actually her PA), first time since November. She put me on Tamoxifen, which after my research I had preferred over an AI. So I'm glad we're in agreement. I'm refusing to look up the side efffects, but I know eventually I'll weaken and look them up. Hoping for minimal side effects.

Hugs to all!

2FUN

lisbeth, re:LE , the only other precaution I think is important is being very careful for things like bug bites, sunburn and small cuts and bruises. Wearing gloves while gardening and dishwashing will help.protect our skin. the reason this is important is that when you get a bug bite or a small cut, your lymph system kicks into high gear to send out cells to protect you from infection and to help the area heal. This kick into high gear can cause an onset of LE, or systemic infections, even years after original surgery. I have met almost 10 women that had bad complications after small injuries to their arms/neck/head. Not trying to be hysterical, just noting we can wear bug spray and gloves to help protect us.

I slept all night thru for the first time in years!! I'm going for a walk, and wearing my bug spray!LOL

raven4mi

LisbethS, yes I'm hoping the fills start taking up the space that the drainage is filling, but after three times it's getting crazy. I mean, I'm at 500 ccs already on the way to 750, but I guess that still leaves lots of room. Frankly, I rarely wear a bra at all these days - only when I go out in public to make myself look even with padding on the right - so it's my fault. Maybe I'll have to dig out that damn compression bra again to see if that helps.

2FUN, cheers to a full night of sleep! Works wonders, doesn't it?

LisbethS

Raven, for me, an ace bandage is lot more comfortable, if your compression bra hurts too much especially since I can use the little pillows (fake boob inserts) that came with my camisole they gave me at the hospital. I put a little pillow in the area where seroma is and wrap with the ace bandage. Still's a bother though.

2fun, thanks for the info. Uh oh, my incision infection is on my right side, the side my lymph node was removed. I really need to measure to get a baseline but how the heck do you make sure you're measuring the same place everytime? A sharpie mark will only last so long, hehehe.

2FUN

start at the wrist and measure every 2 inches. Have someone else measure with your arm hanging relaxed at your side.