September 2012 Surgery
Comments
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Sneaky and Leah, I too have pictures in my head about how these poor receptionists deal with our calls! I left a message with a clerk at my MO's office last Wed. and she must passed a lot on because my MO was really great about giving me the answers I wanted. Sneaky, please let it be Wed.!
Sccan and first AC went well yesterday. No pain at all when they accessed the port, first for the radioactive tracer (they left the needle affair in) and then drew blood for a study and fnally the chemo. I had P/O antinausea meds first, then the Red Dragon Doxirubicin, the A, then C the Cyclphosomide. We were home by 5 and I felt good then. Our daugher who has been travelling for the past 2 months sneaked in at midnight the night before and we only knew she was home when we saw her shoes as we left in the dark for the scan. She made made a baked veggie dish and it went down great. So good to have her home though she will move back to her own place at the end of the month when her sublet leaves. She is going to help me start a blog and order scarves and hats too. So back to last night, went to bed and started feeling a big headachy but slept for a couple of hours then woke up not able to breathe - I think it is congestion and phlegm as I have gained 4 pounds since yesterday AM and my rings are so tight too. I sweated, gasped for air, freaked out and drank water but my throat got ratched. Ice chips, slept again but it happened a couple more times. Now morning and hope that is over and I am feeling tired, still a bit headachy but not really nauseated.
And so the chemo begins!
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Sneaky -
Squeaky wheel gets the grease. It's ur report call... That's how I feel
Hope everyone is feeling good. Going to see the MO Thursday hoping for my onco type back. Trying not to think about it!!! Ughhhh -
My heart really goes out to the ladies that have these crazy wait times for their path reports. When I had my biopsy I received the results the next day. When I had my MX I received my results the day I was released from the hospital. I can't imagine how hard it is to wait weeks. God bless all of you!
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sneakychiquita - I am sure the secretary at mly BS office hates me, I am always calling up there for something or another - and she doesn't exactly have an award winning personality. I joked with her once that she would start blocking my number when she saw it and she said "well, we don't have caller id" - um, yeah lady I was kidding.
rozem - hope you are doing ok.
I go back to the PS yet again tomorrow - I had no idea we would be so close! - and he is supposed to take out stitches tomorow I believe. My drain "holes" have scabbed over nicely. Still having some out and out pain, and a lot of just "irritation" - like around my bra line where there was swelling, it almost feels "bruised" where my bra dug in. I also have this weird sensation of something "in" my left TE/breast area moving? It is the oddest thing when I am walking or bending over, I feel as if there is something bobbing about in there? I am just slightly filled so I have no idea what it is. I also have more pain in my left side - and that isn't my cancer side - maybe I just use that side more to pull up, etc?
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Kltb04, I have the same funky feeling with my TE's! My PS said they are secured in place, but whatever! I feel them shift! Especially when bending or laying down. I was told I was filled to 60 cc's on my right (non cancerous side) and close to nothing in my left TE at time of BMX. The right side hurts way more, and sits kinda high and bulges out. (Ironically thats the necrotic nipple side too.) When I feel what I describe as a shift, all the tissue around that area feels bruised, then when it shifts back into place the soreness subsides. It is bizarre for sure!!! My TE's are over my pecs though, so I'm not sure if we are feeling the same thing.
I just recently got access to the picture forum, so I'm in the process of picking brains. There's a lot of reconstruction support, and I'm hoping that my photo journal will some day be helpful to others. -
Hi girls - I swear they move especially when I go to bed. I asked my PS if the saline shifts, it hurts!!! They feel so heavy. I don't get it. My armpits r so sore also like I have been using crutches. Anyone else ??? I get another fill this week. I am up to 260cc's.
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I don't know how to describe it to PS tomorrow - I also have weird stabby pains in only the left side...I just don't know what is "normal" discomfort, what is unusual, etc..my armpits are sore too - in fact I am sore halfway up my chest to my neck. I guess I just need to get used to discomfort and if it gets better, I will be pleasantly surprised.
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Please add my name to the September list. My MX was Sept. 19. Thank you!...as my surgeon said, "...a sisterhood you never wanted to be a part of" but so thankful that none of us is alone!
Blessings,
Mary
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Quick enough Mary? Welcome!
20 Aug 2012
Sandlake - hysterectomy
4 Sept 2012
Trinity0723 - MX (left)
5 Sept 2012
Leah_S - MX on remaining side plus bilateral TE placement
6 Sept 2012
leahlee - excisional biopsy
katylynn - BMX with TEs
7 Sept 2012
KnBsAngel - MX with TE
marianelizabeth - lumpectomy, SNB
the5owens - lumpectomy
Momluke - MX (left) with reconstruction and symmetric surgery
10 Sept 2012
Sandlake - BMX with TEs
ohiobecky - MX (left)
java11 - MX with DIEP (left), reduction (right)
11 Sept 2012
SweetCaroline2 - MX, Lat Dorsi with TE
Tzvia - MX with TE
mrskimber47 - BMX with implants
SAR843 - BMX, DIEP/TRAM
13 Sept 2012
cthynsh - lumpectomy, SNB
cjw75 - BMX
14 Sept 2012
kittykoma05 - BMX with TEs
17 Sept 2012
positivenergy - BMX with DIEP
18 Sept 2012
gajor4 - MX with bilateral DIEP
4caseygirl - BMX
SooZQ - BMX with TEs
Sharon1942 - UMX with DIEP
19 Sept 2012
michellej1980 - BMX, DIEP
cathyann - MX
taylormd - MX with TE
20 Sept 2012
LockeKopp - BMX with LD and TE
RainMaze - BMX
24 Sept 2012
Sneakychiquita - skin-sparing UMX with TE reconstruction
Mumtobe - MX
annievan - TE to implant exchange
KellieDenise66 - BMX with TEs
25 Sept 2012
Teri060811 - BMX
FightingLikeAGirl - BMX with TEs
26 Sept 2012
sandrav - bilateral DIEP
triplem67 - BMX
27 Sept 2012
kmfrost - UMX/BMX (deciding)
scared2death2 - BMX
28 Sept 2012
Jennt28 - BMX, muscle sparing free TRAM
Dakota212 - BMX with TEs
robertson8272 - MX with a SNB and LAT Flap With TE
1 Oct 2012
kltb04 - BMX with TEs
15 Oct 2012
rozem - BMX with TE's and lat dorsi flap (on the radiated side)
unknown date
Bargala - BMX with TEs
LyndaMarie - BMX with TEs -
Okay, you've all patiently listened to me complain about my wait and I thank you for empathizing, but I need to spout off once more because now this is just cruel. BS's assistant just called to say that results are in... and that she'll see me on Monday. Um, that's 6 days away, "can I pick them up before then?" I asked. Whether it's true or not, she says that only the doctor can download them from the online reporting system used.
I managed to stop obsessing over what the results could be and then I get this stupid phone call. I'm actually pretty mad now and am close to losing it. She should have just said that we expect the results to be in by then. Oh, and my kid has some highly infectious virus that has prevented her from going to school since last Tuesday. I love her dearly, but I so seriously want to have a few minutes to myself soon!
Weird TE stuff - I sometimes feel as though the saline gurgles from one end of the bag to the other when I bend forward. I also have one very soft and squishy spot, but I'm guessing that's just because I had more skin there compared to where the skin was removed around the nipple. On the bright side, all those exercises have seriously improved my ROM these last few days... just in time for a fill tomorrow at the PS office and a return to pec restriction.
Massage - I'm going for a breast massage on the weekend. For real. It's with a lady who has spent the last year learning how to use massage to reduce post-mastectomy complications. I'll let you know how that goes and what it all entails.
KellieDenise - We love you too.
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Sneaky- Oh HELL NO! I'm so sorry, cruel is the right word. You shouldn't have to wait any longer. Did the assistant say why the BS can't just call you?
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Sneaky -
Hell no is right. I would call back or go there. That is down right mean!!! You have the right to know!! -
Apparently the surgeon is in surgery the remainder of the week and doesn't return to the office until Monday. The assistant made it very clear to me that she can't access the actual report, that she only receives the notification that they are ready to download. She wasn't bitchy about it... I just think if she thought about it for a bit she would've realized that a little white lie would have been appropriate in this instance.
I will keep busy with exercise and picking out the nudey pics for printing I had taken before surgery. Anyone else do that? A nude photo session, that is, to document how you looked before the surgery.
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Sneaky you have a great attitude. Sorry if my reaction made you feel worse. : (
I did take a photo of the girls but by the time I thought of it they were already marked up by the PS with that purple surgical pen. They did mine in the office several days prior, and gave my husband the pen to keep tracing over it as it faded. (I think the PS was going out of town prior to my surgery) Anways it was a mess by my surgery day. Hot California weather, sweating, and marker don't go well together. I took the pic the day before surgery. It looked like a toddler had scribbled all over my chest. I posted it on the picture forum. (My member name over there is Weevil) My "before" pic has four nipples! -
Sneaky, I am mad for you. It is truly not fair and I suspect that if your surgeon knew, that she would let you have them somehow. I guess you did not go through one of those screening clinics as I could have got them if they had come in early, I think as they were so tired of me too! I would comment your displeasure to you surgeon but I wonder if all is well as surely there would be some communication. I will be hoping for the best.
As for photos I took them too though I must admit it is hard to take pictures of your own breasts. The first ones made me look like I had big boobs and that is far from the truth.
Marian
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I've been away visiting my dad for his 80th birthday. It felt good to have some family time
Kelly Denise sumised exactly how I've been feeling, thanks for putting it into words!
As far as TE's...oh my they really do feel strange when I bend over! I am having the worst pain since surgery tonight after my fill today. I think I am going to pop. My pain meds are making me nauseous and I still have pain! I'm calling it a day..... Good Night
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My surgery was 9/6. I got preliminary results from the surgeon when I got the drain out 5 days later, but didn't have the official final results meeting with the surgeon & the oncologist 2 weeks post surgery. The waiting is the worst part!
My incision is all closed up, but still purple. I'm assuming that it will eventually become a more unobtrusive white scar? The pain & cording in the armpit is still about as bad as ever. But I try to ignore it and get back to normal activities more every day. Getting some range of motion back, but it's a lot slower than I ever expected!
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My abdominal scar is dark purple while my breast scars are already white. Anyone know if this is the norm?
Jenn -
I feel I have to vent my anger at you ladies. I've had a horrible day and am so worn out.
I went to see the consultant oncologist today, at least that's who I thought I was seeing. I'd had a call a couple of days ago from her secretary to change my appt time as she had a meeting at the original time. Fine, I said. So I turn up and get suspicions that the oncologist isn't in the clinic. A nurse comes out and explains that the consultant is away today so I will see her registrar instead. I saw the doctor coming in and out of the room and immediately wasn't comfortable. I know I shouldn't make snap judgements but she didn't even look as old as me (I'm nearly 32), she looked very timid and just generally inexperienced.
After over an hour past my appt time I was called in. I felt more uncomfortable face to face with her but had to listen. She started telling me how I would be having chemo, radiation and hormone treatment. I thought I'd misheard but she mentioned radiation again. I stopped her and said "really? I didn't think I could have any more radiation?". I also didn't think women usually had radiation after a BMX but that's another thing. She started looking at her computer screen and clicking about and all I remember was her saying mastectomy and radiotherapy so I pointed out that I had already had my lifetime dose of radiotherapy which still didn't alarm her. So I then mentioned that the radiation had caused my breast cancer so I wouldn't be having any more of that thank you very much!
She then agreed I "probably " wouldn't have that so moved onto chemo. She began by informing me that it can "make you very tired, feel sick, you'll lose your hair". "No shit Sherlock! Have you even looked at my history?!" I didn't say that but it was probably written on my face. She said I would get the E-CMF regimen so I enquirer whether it was safe for me to have epirubicin after having previously had doxorubicin for lymphoma. She didn't know, and didn't know what treatment I'd had before and I'm guessing by now that she hadn't even known I'd had lymphoma. She again said it was something she'd have to check but that if I couldn't have the 'E' that I would have Taxotere instead. I asked about risk of permanent hair loss as I've seen it mentioned several times on these boards and other sites but she dismissed it. Then, realising she wasn't even going to being it up, I asked her if I could use cold caps to try and keep my hair. She did say I could and wrote it on a form somewhere. Why didn't she offer me this before?! I asked her the chances of it working and she said "50/50". Basically, she had no idea.
While she was filling out a chemotherapy consent form I began welling up. I was terrified that here was someone who had no idea about me or my medical history and was making decisions based on what is 'normally' done. Also, the fact that she was not a consultant and surely it's not her job to make such big decisions like this. I wondered how I was going to refuse to sign the form and say I wanted to see the consultant without sounding rude but I had to. I simply asked if I could come back next week to see Dr S and talk about it with her.
I expected today to see a consultant who had thoroughly looked at my case and my history and made decisions based on that. I also expected to be told of the statistics and the benefit of chemo and why I should have it (she did mention the size of the tumour which is probably the main factor). I had imagined that I had been discussed in a team meeting where a course of action had been agreed amongst other doctors, not just made up on the spot. There had been a nurse present in the consultation but who didn't say a word and as I left, visibly upset, didn't bother coming out with me to see if I was okay. I felt so alone. I went over to the breast care unit where they were holding a clinic and asked to speak to one of the specialist nurses who has been there when I got my diagnosis and pathology results. She and her colleague were so supportive and understanding and even mentioned that the particular doctor I saw had caused "patient anxiety" before. They told me to forget about today and focus on seeing my consultant next week. They did try and get me an appt for this Friday but there weren't any available. One of the nurses used to be a chemo nurse so I was able to ask her some questions and she was very optimistic about the use of the cold caps. I came away feeling better but am so upset that I had a wasted journey/day. I had been preparing to be told I would need chemo for the last week and to hear it the way I did didn't help. It is still hard to accept hearing it even when you're expecting it. Part of me had been hoping they'd say it wasn't really necessary so I could try and get on with my life. But I also want to do it to give myself a better chance of cure. Either way, today was a complete nightmare and I'm so exhausted after all the crying I did!
Thank you to anyone who has bothered to read this mega post! I typed it on my iPad - took me ages!! -
Michelle -
Sorry u had such a horrible experience today. Have faith knowing u didn't sign anything and will see the person u r more comfortable with next week. -
Michele, I'm sorry you've had such an awful experience. It might be a good idea to tell the consultant about your experience. She has to know what her registrar does and how she makes people feel. And good for you for not signing anything! The crying will help, too. Sometimes it's what you need.
Leah
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Thank you both. I am so annoyed that I waited a week to end up feeling like this. They should have cancelled my appointment if they weren't prepared for me. My mind has been in overdrive this past week and I needed today to come so I knew exactly what was going to happen and why. Now I'm worrying that because I can't have radiation, that I am disadvantaged in terms of prognosis. I didn't realise until today that people were offered it after MX. Then again, since the last lot caused my BC , I'm probably safer from cancer by avoiding it, and not just because of other tissue damage!
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Michelle- sorry you had such a horrible experience.
KellieD - can you please tell me where the picture section is? -
I absolutely read it all and am glad you posted it - you did the right thing and now you have to wait the extra week, you have time to really go over all that happened, even makes notes and go to see the consultant with questions, comments on your awful experience and then hopefully be able to move on.
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Michelle I am so sorry you went through that experience. It sounds horrendous! You have a right to expect that your case would be taken to a multidisciplinary meeting and to get expert care. Definitely complain next week.
Jenn -
Michelle - I read every word. Bullshit session with the registrar. Wait until next week and voice your concerns. You sound more knowledgable about your situation then they do... let them know it.
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Today I lost a dear friend of mine who has never left my heart, despite the distance between us. I once had to decide between him and my ex- and I've always wondered what would have been if I told him I loved him.
Breast cancer isn't everything. I'm drinking my month's worth of 2 glasses a week tonight. Cheers.
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Sneaky -
I am so sorry. There is nothing worse than a broken heart -
Michelle, what an awful experience. I'm so very sorry. Jenn took the words right out of my mouth. You deserve a "multidisciplinary" team especially with your unique circumstances. You clearly were the only expert at that meeting. Glad you didn't sign anything, and were brave, and wise enough to walk out. Thinking about ya this week.
Sneaky- I'm sorry for your loss, and you're absolutely right, breast cancer Isn't everything.
Kittykoma- the picture forum is separate from BCO. I was directed to Lilah from BCO. She is one of the "gate keepers" to the site. I originally sent her a pm, and she was great about walking me through the acess/membership process. -
Michelle, I completely agree with everyone else - that was terrible the way you were treated and you absolutely did the right thing! I wouldn't have thought they would suggest radiation. I was told beforehand that radiation always goes along with lumpectomy, but if you have mastectomy then you won't need radiation unless the nodes turn up positive.
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