August 2014 Surgery
Comments
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You are so welcome Sunflowercat, hope it helps.
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Lipglossmom:
FUCK YOU CANCER!! YEAH!!
I just wanted to let you know I am thinking of you. Your stomach is rockin' and so is your path report, but I want you to know I understand about the scooped out place. I have a similar situation, but with an infection in my right side. I have been in the process of repairing it. I just want you to know we are twins! Feel welcome to lean on me for support. XXX
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Hi ladies, I think I made a mistake yesterday. I wore a sports bra, and it did not feel tight. When I got home after 3 hours. I had fluid around my incision. I have more pain and feel stiff in the area. Has anyone had this too. I feel really stupid that I did this sigh.
Do I have to call my sturgeon tomorrow?
Thank you Ladies
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Meadow - thank you so, so much for reaching out. I'm a nervous wreck today for my bone scan. I've had rib pain that they scanned while on chemo that came back clear. However, the pain never went away and has been more persistent over the last few days. Not sure if my mind is messing with me on that one or what. And now the back pain. Trying to focus on the fact that I got a pCR, but it's hard right now. I'm just plain scared. I'm sure this will be clear, but then what is going on? I want a reason for the pain. I can't keep wondering and worrying.
Sorry for the downer post, ladies. Hope everyone had a great weekend and hope you're all feeling better and better everyday.
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Well-- I've got my path report back today, 15 days after my quadrantectomy, and looks like I'll be getting off easy. (at least for now) Most important info--- sentinal lymph nodes definitively cancer free (just "reactive"). Breast tumor margins clear (cancer cells found 3 mm from edge), so no double dip necessary. ER and PR receptor positive and HER2 neg. Ki-67 is 7%, so low proliferation index. So, about as good as it can be! Now-- from what I understand from this website, in America, and most of the rest of the world, this would make me a candidate for Oncotype testing. But here in Italy, it's hardly ever done, because the National Health service hasn't gotten around to adding it to the list of things that they will cover, and so doctors don't even mention it to patients. I have seen news reports saying that it IS possible to have done here, however, by paying privately 3000 Euros. (plus postage to send it to California, USA, I guess) That's fine with me, think it's best to do it to have best possible info to base treatment decisions on (no?). But surgeon doesn't know what I'm talking about when I mention it, and tells me it isn't necessary. (although he DID give me the assurance before surgery that the tumor tissue would NOT be thrown away after the routine tests are done, and so it will be available for any future exams--- That's the real reason I brought up the issue to the surgeon. My FIRST appointment with an Oncologist will be next week (the 17th) and hopefully I'll have a more fruitful discussion with him about it. Anyway-- looks like my next step will be radio-- but will be the oncologist that will direct the opera also for that, from now on.
Quilt-- Wish I had some info or advice to give you, but I don't. I'll just say that you shouldn't feel stupid, since that's what seems recommended here to do after surgery. Also I put on a sports bra yesterday for the first time. (My surgery was day after yours.) Felt good not to have my surgical area rubbing against my shirt. But when I took it off, I saw I had deep indentations smooshed into my quadrantectomized breast that didn't seem to want to go away. (No fluid build up or outflow, though) I don't know-- I'd think in your case at least a call to the surgeon's nurse would be a good idea. I would guess (UNeducatedly) that you just pushed up towards the surface some fluid that was deeper below-- but best to check in with the doc's office about it, especially since it's causing you pain.
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quilt - have you tried icing the area? I find it really helps with the swelling. (I currently have an ice pack under each arm pit!) still call your surgeon and let them know if the fluid hasn't improved. Fingers crossed it resolves itself with some rest.
Allydp - I'll be thinking of you today and sending you clear scan vibes!! I really hopes it's just the trauma of surgery and inactivity making you feel this way.
I have my follow up with BS today and hoping things go well. My node incision got infected even though it has been covered in tagaderm since I had the drains removed. She looked at it on Friday and cleaned it up, but my right breast (cancer side) has been so swollen all weekend. Really noticeable too. My neighbor mentioned it when she was visiting last night. I also have a lump on my left side near the armpit and TE that I need to ask her about. Always something!
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imheretoo - great news about your pathology report! Yay! Good luck at your MO appointment next week and obtaining your oncotypedx test.
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Allydp! I think we posted at same time and I didn't see your post until now when Sunflowercat's post brought my attention to it! I want so much for your scan to come out clear and that someone gives you a resonable alternative explanation for your pain (and a functional way to solve it to!) You KNOW we're with you on that exam girl, worrying along with you, but trying to push it all right.
Sunflowercat, I'm sorry your surgery healing is being such a b*tch, giving you all those problems! Did doc prescribe systemic antibiotics or just treat infection locally? Please tell us what doc says on this visit and if she did something to help you feel better!
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Well, insurance denied my scan based on it being too soon since the last one. My BS's office is working on finding out if there's anything they can do to override it and will also speak to my BS and see how she wants to proceed. The story with this pain goes back further than just back pain. Without going into the whole saga, I've also been having increasingly painful rib pain that meets all criteria of bone mets, but nothing has shown up on scans. So as much as I try to put the thought out of my mind, it's hard to do with the daily nagging pain as a reminder. I'm supposed to hear back from the office today, but I'm so upset right now that my husband is coming home from work. I cannot keep living in fear like this. The back pain has put me over the edge. I cannot understand how insurance companies have the right to dictate patient care.
Again, sorry for the doom and gloom, but I needed to vent somewhere.
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Oh Ally, please keep venting. We might not be able to help, but you know that you have our love and support. Giant Hugs for you.
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ally - hugs. I am so sorry. Insurance should never be able to dictate the course of medicine. We are on a slippery slope in this country. Praying for you.
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WT?????????? Ally this is awful and doesn't make any sense!!!!! There has got to be a way that if doc orders it and specifically explains why it is necessary the company has to accept! (in my imaginary world) What kind of crazy world is America??? How much does a bone scan cost out of pocket, anyway? Don't want to pry into your personal finance situation, and know all don't even have the option of considering it, but if it were me, and if I could at all afford it, I'd pay out of pocket to have it done if necessary. Will insurance allow an X-ray? That might give some info, wouldn't it? What about a CAT scan? I read that sometimes osteolytic bone mets show on CAT scan and not scintigraphy scan--- Would insurance company accept that as a reason to need to do one after your negative scint bone scan? Or a PET scan that I read can sometimes find bone mets too small to be seen by other tests?? I'm sure your doc will find a way for you to do the exam you need and get the answers you need. The world cannot possibly be that awful that she wouldn't!!!!! It had better not be!!!!!!!!!!!!! We are all SSSOOO thinking about you and worried about you!!!
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Allydp - so sorry you are having such a hard time today with everything. Know that we are all with you.
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Imheretoo...congrats on your path report! How's your breast?
Ally...do a search on differentiating between bone and muscle pain. The doctors are going to want to be absolutely sure, but according to the internet, there are several differences between the two types of pain. I looked it up myself because I was starting to worry that my sore muscles were in fact symptoms of the Mets. (And nah, 90% sure it's all just sore muscles)
According to the American Cancer page, xrays will show bone Mets, just not as soon as a bone scan.
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Milaandra, I just now put on a soft stretchy triangle type cotton bra-- that seems to be helping the clothes rubbing sensitivity without smooshing. But I really have NOTHING to complain about!
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Imheretoo! Congrats! **happy dancing**
Ally: F! F! F! your insurance company sucks! Standing by to be 'in the bag' as soon as you're able to get in for a scan. Milaandra has some good advice there, I think.
Sending you gentle hugs. {{{Ally}}}
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Ally, why do you plan to have your ovaries removed if your tumour wasn't hormone sensitive?
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allydp,take deep breath and relax..
There are other options for diagnostic testing.. CT, MRI, PET, and even simple Xray may show what is causing problem. You just be assertive with your doctor's office. Prayers are going up for you, dig deep and get that positive attitude back.
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Allydp, I am glad the sweet hubby is with you. I am trusting the previous scan and path report. Until you find out otherwise you do not have mets..I know having pain in a different area is scary. I have been there too. but you have had extensive treatment to kill your cancer. This past 10 months have taken its toll on you emotionally and that is to be expected. You are a precious soul and you just do not want to take on another battle. But if you do have to you can. You can do this. Stay calm and I am saying a prayer for you
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Allydp - I am aghast at what has happened. Ditto to Psalm's advice and hopefully your medical 'team' can successfully deal with ins co. Yes, this is a safe place for you to vent. You have been on a wild journey this year and I understand your feeling of fear. While I know you are strong - please let yourself lean on others when it is overwhelming and know we are here for you too. Sending gentle hugs and prayers up for you.
S
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Vent away, sister Ally! I must second Meadow's post. You are a precious soul. {{Meadow}}
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Oh my goodness, ladies...you've got my crying like a baby over here at your outpouring of support. Truly. It's been a hell of a day. Like the down on your knees call out to God kinda day. But I'm digging deep and trying to get to the bottom of this and stay positive. I have to run now, but just had to say thank you. From the bottom of my heart. You've all lifted me up beyond belief.
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allydp - glad to hear your spirits are lifted by all the support here. I'm thinking of you and hoping you stay positive through this. You are a kind, brave soul.
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Good going Allydp! You can handle also this bad stuff and we're here to help you do it. The strongest softest non-squeezing hugs to help carry you!
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Allydp!!! Love and hugs sweets!!! I'm with meadow and relying on previous scans being negative! I hope they can figure something out with your insurance. Keep breathing, or drinking! Which ever works!! Gentle hugs to you!!!!!
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Allydp- Vent away!! This is some scary shit and we are happy to listen! sending you prayers, hugs and a new list of swear words for our insurance system.
You are strong!! It still sucks.
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Allydp,
You have every right to vent!! I am praying for you..my prayer is that you will stay strong and fight whatever comes your way! You can do it!!
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Ally:
Pursuant to Sassy's suggestion, a string of swear words for your insurance company..
%#%^&*)(*&(*&*(&%%^$^%$#$%#@^%$%*&^(*&)(*(*&son of a bitch!*^&^%^*%(&*(&)(*&)(*fuck me! give me the fucking referral!!(&^%$%$^#*&^(*&)(*_(*&(*&%*%&$^%$!!!
{{{Ally}}}
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Okay…so here's the lowdown. My insurance denied the scan because they were getting mixed reports. Turns out my BS's office also sent along my mastectomy report which stated, "no pain, patient doing well." Well yes, this is true in terms of sx recovery…but the rib/back is a whole separate issue. I told the office and they're supposedly resubmitting the proper notes. I'm also starting an appeals process in which I'll write a grievance letter to the medical director of my insurance company. If it's still denied at that point, I can appeal to the State of Michigan. Cancer is stressful enough without having to jump through these hoops, but I'll do whatever it takes at this point. I just want to properly evaluate this pain and put the issue to rest. Yesterday was tough, but after my husband came home we had a long talk about better prioritizing things. We're both burnt out. I was dx back in January and did chemo first, so we've been at this the entire year and it's starting to take its toll. We still have a ways to go with possible radiation and additional sx's, so we had to come up with a plan to better handle the stress. But to be honest, I think we both needed the meltdown. We got out a lot of pent up frustrations and tears. I woke up today feeling better and am telling myself it's nothing until it's something. I just want to say again, thank you so much for all of your support. It's nice to come here and know that you all totally get it. You ladies rock!
Lipgloss - so sorry about the rash. How is it? Better I hope!
Ml - dinner last weekend was awesome! Although my eyelashes are still quite stubby, I slathered on the mascara and felt like a million bucks! So glad to hear you're enjoying time with your family while recuperating.
Sunflower - yes, always something! So annoying! How's your infection? Better I hope!
Imhere - We owe quite a bit already out of pocket since the dx, otherwise I might just consider paying for this darn thing out of pocket! But I hear you. It's disgusting how insurance companies are able to dictate care…or at least dictate care to those who cannot afford to pay for it themselves. I've already had a clear x-ray thankfully, but typically they aren't the best at finding bone mets until a break or fracture.
Mil - I carry the BRCA2 gene which puts me at a high risk for ovarian cancer, so I need a prophylactic tube and ovary removal. And because one of my ovaries is adhered to my uterus, which also has 2 fibroids in it, I've just decided to do a total hysterectomy and be done with it. It was a hard decision since we don't have children yet (we'd been trying for many years), but we hope to find a surrogate when the time is right.
Meadow - I can't tell you how much I appreciate your care, concern and encouragement. My husband echoed you in that he is trusting the previous scans and he firmly believes this is not mets. Deep down I do believe that too, but it's so hard to ignore this constant ache in my rib. I wish the pain wasn't so localized. The only thing I can think of is perhaps the SNB caused some nerve damage and I'm confusing that with bone pain. My scar isn't right next to the pain, but it's not all that far away.
Sending love and gentle hugs to you all!
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Alicia, I'm so sorry you are having to deal with all of this! I have Kaiser and they denied me the BRCA test beause I am 46, not 45. Also my PS said they won't cover MRIs to check for implant leakage. They DID give me a bone scan after diagnosis because of my years of back pain and sciatica. You just finished chemo recently so I'm betting that your back and rib pain is not cause by BC. Hang in there and try not to worry until you know. Also, I think we all need meltdowns from time to time to release all the built of emotions us "strong" women hold inside. Hugs.
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