September 2012 Surgery
Comments
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Ok got the quick call from the MO. ONCO type was 32.... Any thoughts ??
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Kltb - I already returned my bed. I started to miss my regular bed, so I went back to it. I also have the horrible swelling under the arms except one side is more spread out and the other side looks like a mini boob. I look lopsided and I hate it. I also have that opening on one of my incisions that won't close all the way. Of course my PS blames all this on my extra weight. I know I was fat before the operation, but I know I didn't have the mini boobs under my arms. I hope this is something he plans to correct when he does the exchange, but I'm afraid to ask. I'll have to be brave and ask him any way.
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Dakota - I can't help with the oncotype testing. I never had it done. I think with my being her2+++ chemo was a given.
Kellie - my mil means well she just drives me crazy. And we disagree terribly on things like politics and I don't have the patience for nonsense right now. I may venture out tomorrow.
Kk - ok I'll say it again and add more. Your PS is a douchebag and an a-hole. I don't think that your weight has a thing to do with it. I want to punch him in the nose. -
KK,
I am a size 18 on top and was almost a D before the MX and a healthy C post recontruction and my incisions are fine. I believe your PS is full of crap!! Just my nickel minus 3 pennies! -
Kittykoma - I ditto the d-bag comment made by ktlb. Find your voice so that you get what you want! My PS said when I'm figuring out what size I want to be that I could try going a little bigger and if I didn't like it we could remove some fluid from the TE (skin and muscle would shrink back). This leads me to think that you can still get the size you want. I think that applies to you as well, KellieDenise.
Dakota - I haven't looked into the Oncotype scores much, but the BCO website gives a brief breakdown of the risk of recurrence based on your score. I think your score of 32 is just on the high side.
Jenn - I'm so sorry to hear that you are unhappy with how much bigger you are than you wanted to be. I'm still hoping it's swelling... I once had surgery on my jaw and it took over a year before the swelling went down! I looked like a total chipmunk through Grades 7 & 8. That, in combination with braces and every accessory possible for them, resulted in a terrible transition to my teen years.
And my results are in! My BS came into the office at the end of the day so I didn't have to wait through the weekend. Going into this I knew I was multifocal, but it turns out that the 2 palpable lumps were part of the same tumor meaning that it was much bigger than expected at 3.5 cm. This is crazy to me considering how small my breast is. But they still found another 1.5 cm tumor so I'm still multifocal. Yay! The other major findings were that there was no metastatic carcinoma in the lymph nodes (not sure if isolated cancer cells were checked for), but that there was angiolymphatic vessel invasion with both tumors. And, unfortunately, it appears to be more aggressive than the biopsy suggested... pathologist graded it as 2/3.
My BS seemed really happy with the outcome, but I would have been way more impressed if there wasn't that lymphatic invasion and if it was a lower grade. She says my MO will take a look at things and do the official grading then. I have a feeling I'll be in the gray zone for chemo.
Time for me to zone out on Netflix and eat too much ice cream.
PS - My mom has lupus. She made some young doc's career when he took her on as a case study and came up with the diagnosis (she went into a coma and it took them awhile to figure out what was going on). And she's gone well past the expiry date they put on her. The drugs they've prescribed over the years have made her organs gone to crap (her systolic BP is almost always greater than 200 mmHg), she also has RA & MS, and she still manages to help me out with childcare every week. I don't know what I'd do without her and I don't think I can ever match her strength.
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karri...I love you...you crack me up and even tho I don't want anyone else to be going thru this it's nice to have someone with the same SEs...I start to freak sometimes that something is wrong...so glad to have the confirmation that I'm not the only one.
Kellie...you are so funny...I asked my PS how much weight I lost having my breasts removed...she cracked up and said...I know since I'm Asian I'm supposed to be good at math but I have no idea how to compute that. Anyone on here know how much cc's compute to weight? I love my PS which brings me to my rant...
kitty...I hate your PS. First of all the fact that he is talking about your weight so much is really pissing me off...what the F is it his business what you weigh. He does this for a living...there should be no reason why your reconstruction should be any harder than the next persons. You can also mention to him that when you get through this horrible part of your life you might plan to lose some weight and you don't want to have large breasts when that time comes. As I'm writing this I'm getting madder and madder...why would you even have to come up with a reason for what size you decide you want to be. This is your body and if this Dr doesn't know how to give you what you want than he isn't worth keeping. I honestly don't think checking out another PS is going to delay too much. The major surgery is over. Most PS's would be happy to pick up where you are now. You are going to be w this person for a long time and he makes you feel like shit about yourself and you don't need that. It's all we all can do right now to keep our self esteem. You are in TX girl...there have got to be some of the best of the best PS's there. You should not have to go on any longer with this harrassment! Going to step off my soap box now! -
Fighting-
I do know that 60 cc's is 2 ounces. I agree what size u want to be us UR choice regardless of ur weight!!! -
Hi Ladies,
Just checking in. Hope everyone is feeling better and tons of sorry's for those of you still dealing with the drains!! They are awful. I got my last drain removed 2 wks ago. Went to hosp to have a port put in days later, they did the procedure and then took it out! Said they didn't like the placement. Then went to Boston days later for same procedure only this time in the cardiovascular unit, and they couldn't do it because they discovered infection in my incision... so been on antibiotics and still waiting for the port appointment. I'm worried about having to wait so long for chemo since they did pull out 5 cancerous nodes. Any advice for me?????
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Kittykoma, let's see. You have a PS who doesn't care what you want (he thinks women should all have big boobs, and that's what you're gonna get), he doesn't know how to deal with an incision that's not closing though he's still giving you fills which stress the incision, and he blames you for all the problems since you're size 16. And you're staying with this doc for what reason? Seriously, getting a second opinion from another PS would be a good idea. Believe me, you would have a hard time finding someone worse that Dr. DB.
Leah
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mrsK...I have my port in the inside of my upper arm. This is the way they do it mostly at Cedars Sinai Hospital now. Maybe ask them if it is an option for you. Sounds like you have really been through it...I'm sorry...hope things get better soon.
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Mrskimber, good to hear from ya. I'm sorry about your infection. I hope those antibiotics kick in real fast so you're able to have your port procedure, again. : ( Did you notice anything going on with your incision, pain or fever? I wonder how long these darn incisions can become infected. Keep us posted. Hope you're enjoying some beautiful MA fall weather. So Cal has been ridiculous in the 80's, today was our first gloomy day.
Sneaky- glad your BS got back to ya. Great news on your clear node! When will you be able to meet up with your MO, and get their spin on things? I think in the meantime you totally have the right idea Netflix, and mass quantities of ice cream! Also got your PM what in the world is going on in your house with exploding wardrobe glass!? That's crazy! Are you sure you didn't just overload on your pain meds, and imagine the whole
thing?! J.k. Definitely an Ikea recall. That's scary. Glad nobody was hurt!
Dakota- I'm not too familiar with the details of the oncotype dx. My BS is the director of a fairly new website called breastcanceranswers.com from what I understand about the site you can submit questions and receive video replies from breast specialists. They also do a live google chat every Sunday afternoon. I watched last weeks panel, and thought it was pretty cool. Anyways the main reason I bring this up is that I believe the website is sponsored by genomic health so there may be more info relating to the oncotype dx topic? Not exactly sure though. -
sneaky, so glad you finally got your path results and negative nodes. As for the other, Karen Gelmon should be able to give you the goods on that on the 24th (I think you said that was the date you see her?) and then a plan should emerge. Our good friend who is the head onc in Cape Breton called me yesterday and it was as good as a second opinion as just as long as my first MO consult! He and his wife know Karen. But he is totally in agreement on my management which was really good to hear. We went over absolutely everything and I got to ask hard questions and use a bit of bad language even. LOL!
Day 6 of chemo and am managing. Still walking 5 k a day and even longer today as we spent it on Bowen Island with our neighbours who have a cottage there. Great walk to the lake in the woods. Main S/E has been diarrhea and the opposite of many it seems. I called the nurse help line tonight and she was very reassuring and encourages me to ride it out. I just ate two bowls of ice cream but think this is not too much? Hey, the wine issue has become moot as for the first time it just does not appeal. Is this a silver lining?
For those of you with all the drains and post op issues, I feel so bad for you! I was thinking some day I might get there too but our MO friend thinks I will need rads before surgery (modified radical mx and axillary dissection) and that can create problems for reconstruction.
Hope you are all having as good a weekend as possible. I am in bed after my first big outing after chemo. Good to be with my husband and friends who totally understood it when I went from feeling good to horrible in 5 minutes then back again!
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Marian - I'd highly recommend that you consult with a PS when talks of surgery come around. Yes, rads can damage the skin and make problems for implants, but flaps can be an option. In fact, I would have preferred a certain flap procedure, but unless they've run out of options they rarely harvest from anywhere beyone abs and lats here in Vancouver, neither of which was appropriate for me. It took me about a month to get an appointment with a PS in Vancouver so plan ahead. Also, I know you're considering a prophylactic BMX and there's many good reasons for it, but one thing nobody ever really mentions but that I think is serious is that you lose sensation in your foob. Of course, life over limb, but I'm fighting to keep my one good breast because nipple sensation plays a heavy role in my sexual well-being. Just another thing to consider.
Kellie - Unfortunately, the broken glass door was real. I spent the day convincing the store that this happened without anything touching the door... I will be receiving new WOOD doors on Monday. Technically, their warranty covered delivery/installation, but they weren't agreeing to pay that until I played the cancer card. First time I've done that and I so totally don't mind that I did.
Mrskimber - Healing thoughts for you. I don't know what else you can do aside from taking your antibiotics.
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Sneaky, no flaps for me, no fat anywhere and scars too on abdomen and already ruled out. My MO is already planning for RO/BS discussion mid chemo. Yesterday's conversation was also about forgetting about the left breast completely for now, if there is anything there it is being treated by the chemo. So we are talking the modifed radical right breast but he seriously feels rads are imperative before surgery (time is of the essence due to the aggressiveness) and then surgery and if reconstruction possible so be it. My life is on the line is basically what he says and to worry about surgery and reconstruction and second breast before rads not helpful. Conversations to continue. My MO by the way knows I have this friend and asked last week what he has to say so it is good to have her support too of another opinion! I will be asking too just when and how the BS/RO/PS meeting happens. Long road of chemo ahead though and though I am keeping up with my walking/yoga, everything else is different!
How is your daughter?
Marian
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sneaky - FINALLY! Since I had neo chemo strictly based on my biopsy I don't know what all factors into chemo...I just know my biopsy was a "3" in grade and I had her2+++ so that made chemo an automatic. I think the lymphatic invasion is going to be a strong indicator for chemo. Do you want to hear all the usual platitudes about how it's "doable" - lol - it really is. It's not fun or a cakewalk but you can get through it. That is great that your mom can still help you so much. Mine is doing well and she says that having something else to focus on (me) actually helps her not focus on herself so much.
mrskimber - what a mess with the port! I had a similar thing - got an infection after mine was placed but it cleared up and they were able to start chemo with only a week's delay. Is there any way you can go ahead and get started using veins and then get the port issue addressed later? I don't blame you for wanting to get the ball rolling.
marianelizabeth - walking 5 K a day on chemo? Impressive!!! RE: rads/reconstruction - rads are still in the air for me but my PS will do the lat flap with an implant even with radiated skin so that might be an option - since they are only using the muscle/etc from your back and the implant forms the breast, I don't think you have to have fat.
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thanks kitb04, it is a long way off but good to know there are options down the road! Still have diarrhea this AM but keeping yogurt/apple sauce/gingerale in right now and am in bed. May skip the walk today.
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Thanks to all of those who replied to my concerns with my PS or the DB as some of you called him. You have given courage to start looking for a second opinion from another PS. One of the concerns I had about that was that the PS that I see now was a total sweetheart on the first consult, so I keep thinking that others might be the same way. It sounds like that is not the case. I will start shopping around. Thanks for all the support.
Have an awesome Sunday!! -
Good deal kittykoma - you deserve to be treated better than that!
marianelizabeth - hope you are feeling better.
I spent the weekend in bed...my PS appt is tomorrow and I am going to address my concerns with him. I can't do this for the next howevermany months...it has to get better.
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kitb04- thanks for your reply. No, unfortunately my veins are very small and this isn't an option... I hope to get the port done this week and have my first treatment shortly thereafter. Fingers and toes crossed.
kelliedenise- btw, the weather the last couple of days has been beautiful. Breezy and cool and lots of colorful foliage. I love fall, its my favorite season. With regard to the infection, no I did not have a fever, was diligent and checked for a fever a few times a day everyday for weeks. I woke up one morning two weeks ago and the incision was leaking, but with fluid, not pus so it was just starting. It did have an awful odor though!
Sorry your weather's been lousy... I hope it gets better right quick!
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Kittykoma, I'm glad to hear you're going to look around. It would be a good idea to write down all your questions before you go and make sure you get straight answers.
So I went to the PS yesterday. She's concerned about the areas that haven't healed and said I should finish the Zinnat (that's the antib I've been taking) and also wants me to use Silvadene on it. I'm supposed to start fills in about 6 weeks but if this isn't healed she won't do fills yet (she's being very cautious with me). She said the good thing is that the infection is superficial so isn't affecting the TE, just the skin.
Leah
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Mrskimber-
Where r u having the chemo. I go to Dana Faber to meet with my MO on Thursday. My onco type was 32
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Dakota- my onco score is 30...I wasn't happy about that yet everyone around me says, "I like those odds?" and I say; "Well, I'm glad you're satisfied that I have a 70% chance of living past 5 years. The things people say. There is a thread for this very conversation.
I go to DF in Milford, Ma. You go to Boston right?
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Yes, I am going to meet him in Boston in Thursday. I am going to try to do my chemo in Milford tho. I hope
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Dakota- if you do chemo in Milford, who knows, we might run into one another. Hopefully starting on the 30th. I just want to get it over with...
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Mrskimber
That would be great. I have no idea what is in store. I will fill u in! -
kitb04, hope the PS appt. goes well and that he hears your concerns. Yesterday was pretty bad with the diarrhea and I finally called the nurse helpline again last night and the on call doctor called me. We agreed for me to try Immodium and so far today have managed a banana and oatmeal and though I am in bed and feeling weak, no rumbles so far! We are supposed to go to the symphony tonight but I think not; afraid of catching something and can't imagine being up so late!
Monday for all of us and appts. for many of you - I hope for good things for you all.
Marian -
Big hug to those of you struggling with the chemo SEs :-/
Those 5 months of chemo were evil, but have become a blurred memory surprisingly quickly.
Had PS follow-up yesterday. He is pleased with my healing and I now won't see him until March next year, when we will talk and organise any scar revision, shape tweaking and my nipple reconstruction.
I'm off work until Friday this week. Planning on entirely relaxing and enjoying these last days at home!
Jenn -
Jenn, just keep relaxing and taking care of yourself. Did you tell the PS you weren't happy with the size?
Leah
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My PS got in before I said anything and said that we will meet in March and discuss any tweaks or size changes and nipples. He insists on 6 months healing so I am happy to heal and then deal with any changes at that point.
In the meantime I would really like to get a bit more weight off. PS says that because the breast tissue is now abdo tissue it will lose weight more than normal breast tissue would...
Jenn -
Leah - I hope your infection gets better soon.
Jenn - Enjoy your last few days off from work. I will also be going back to work next Monday.
Kltb - How did your appointment with the PS go!
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