2010 Sisters
Comments
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Hi Sherry - unfortunately they didn't do one for me because I was HER2+ (not sure exactly why) but there is a thread specifically on oncotype results that is very interesting. If you search on 'oncotype results' in the search function at the top of the page it should come up. Best wishes!
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On husbands - for almost 30 years my DH and I hardly ever talked about feelings and we never fought about thing, when you don't talk there is not much to fight about. Anyway when I got my dx it was as big a shock to him as it was to me. He had been to every appointment and every test and never said anything except for "whatever you decide will be ok". After the dx he started talking and I asked him why the change and he said he was hit hard by the fact that he could lose me forever and he could not imagine his life without me. All of this is to point out that our dx affects our DH too. You can call the ACS and they do have books, videos and counseling for spouses and caregivers that will help both of you deal with this emotional time. It is possible that a dx of BC can restore the love that first brought 2 people together in the beginning.
I agree that we should not have to put up with the inefficiencies of nurses or doctors, so if you are not getting the care and attention you need first talk to the dr then if he cannot or won't resolve the issue, go someplace else. Even in the middle of a treatment plan you can make a change. All your records will go to the new dr and you should not have to miss a beat in your treatment. You might want to call a case manager either at the hospital or more likely with your insurance carrier to help you make the change. I have found they can be very helpful in keeping things on schedule and dealing with nurses and dr that give you a problem.
On a good note --- I got my new circulating tumor cell count and it went from 150.4 to 115.4. This is good news as the onco thought that it would go up before it started down. This means the current treatment plan is working. YEAH!!!!
My DH is home with supper so I will have to go for now. Hope everyone can find some joy today and has a restful evening.
Amy Jo
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Ya know im still in the angry mode so all i can say is THOSE SO CALLED PROFESIONALS IN THE MEDICAL FIELD NEED TO WAKE UP...We the people put food on thir table,pay for their kids education etc.WHO THE HELL DO THEY THINK THEY ARE TALKING TO...i have incidents like that and ya know what i say IN THEIR FACE. ....GO TALK TO YOUR MOTHER THAT WAY.
i come from brooklyn,im italian and a scorpio.see ya.i change drs.like people change their undies.and if the nurse gives me a hard time i dont have a problem saying the same thing.
this bc really made my temper worst.
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I was just diagnosed with DCIS in Sept and feeling a bit overwhelmed by everything. I too appreciate all of the information and compassion that is on this website. i have learned so much that I can't even begin to thank everyone for being so open and communicative about this dreadful situation.
Love to all
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Hi Grannydukes, I can't give you an advise, but I can give you a lot of HUGS!!!!!!!!!!!!!
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I'm having a bad day today. I had surgery yesterday to sew me up from the radiation recall situation and the burst breast. So great the infection is gone. While he is sewing me up his assistant asked him why is my skin so dark and thick. So he says it's from the burn. So I ask him did I burn from the inside out since I had the mammasite radiation, he says yes. So he tells her to get some grade of stuff to sew me up and she says you never use that stuff he says I need it today. Then he says I need to wait 3 weeks to remove the stitches because it's so bad and will take that long to heal.
I have no idea what will happen when the stitches come out. The only thing I do no is NO MORE CHEMO. If the Onc. had given me the facts I would never have had it done so soon after the radiation.
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Talking about nurses, I will never forget the one who had to do my chemos. She was furious with me because I refused to get a port put in me. She said "I" was making her job harder when she had to keep pricking me to find a good vein. I told her I had the right "not" to get a port and also the right to have a nurse who could be experienced enough to find my veins without causing me horrible pain. She said she "hated" having to do it this way so I told her she should think about another profession and my Onc should get us a nurse who wasn't afraid to do her job. We have enough to be concerned enough with getting Chemo and don't need neurotic nurses to deal with! A new Onc took over my first Onc's practice and for "some" reason (I wonder why??) he thank goodness did not take Nurse Neurotic with him. He left her behind. Maybe she is cutting hair someplace and there are probably a LOT of "bald" people running around!
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Medigal I love it. Nurse Neurotic. What is with these people!
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Kira - I am so sorry to hear of your trouble. Take good care. Hug to you.0
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Hi sherryc
My dx is the same as you and had a lumectomy as well. I too was told no chemo but my oncotype came back 20. My onco recommended chemo so I went with it. The stats for reoccurance were greater than me getting bc in the first place. it is scarey and not very pleasant but I just feel it is what it is and something I have to do.Although I cant wait till its over and see that it was worth it.
Good luck with whatever you decide.
Vickie
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kira1234--I know all about radiation recall as I had my "backside" radiated last year due to colon cnacer. Lots of pain while on chemo this year--even had to use pain pills! But yours sounds even worse! I really hope you heal quickly!
I feel bad for hose with husband and/or nurse/doctor trouble! I feel blessed in both areas--have had no problems. Its great that you gals are standing up for yourselves and doing what you need to do!
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Hi! I just had my lumpectomy post-op appointment with my BS today.. He said that my pathology report says that i have an invasive cancer cells found and needed to have a sentinel node biopsy..I am scared on how again the procedure be done and how painful it would be..Can anyone give me some advice or info about the procedure i would appreciate very much..It's been 7 days since my lumpectomy but i still have so much pain and my breast is still swollen.Is this normal or what?..Does anyone have the same situation like mine..How long does this pain and soreness would last?..Please help i need some encouragement and support..I am getting weaker due to the pain and more procedure coming..I hope everyone is feeling better..My prayers to all!..
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Linfer...i am on my way out the door BUT hang in there...the sistas will be on shortly.I know they will give you all the info you need.Im prayin for you right now.We all walked in your shoes and they stink.Its a hard road but there is a light at the end of the tunnel.Hang in there just a little bit.God bless you.HUGGGGGGGGGGGGGS
K
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linfer7358 I had a sentinel on my right side (4 nodes) along with my BMX and level I nodes (10 total) on the left. Typically for a sentinel they only take 1-3 nodes but in my case 4 lit up or maybe they were so close together (I'm small) that it was difficult to take only 2-3).
The dye/radio active material injection part wasn't too bad at all. In my case they injected 4 shots of lydercaine to numb the area. Stung a little. When they injected the radio active material I felt nothing. I would check before to see if they use some numbing agent. Demand it.
As far as the pain afterwards I was sore but not too bad. I may not be a good example though. Even though I also had a BMX and 10 nodes on the other side I never took a pain pill, used the pain pump or even a Tylenol. First time I took anything was 10 days ago after chemo my back killed and I took some ibuprofen. Now that was painful.
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Jag so sorry you are dealing with husband issues, but if he wants to get involved , LET HIM Ifound out my, as I thought distant husband, was not taking this BC seriously, insisted on dinner on time and what it was... I lost it several times...and finally, he said you are right I shouldnt expect any thing right now and he needs to get on board to the new normal , but he needed to get specific directions as to how to help... so I spell out all appts. and days he is responsible for dinner etc. on a calender on the fridge... is working out well as of two weeks and I feeel soooo much better...as I told him we have no small children ,only my beloved cat and he is now feeding him too un asked... but still calls him Fleabag ... To all of you who have kids and husbands my heart goes out to you for keeping it all together...as a last laugh my best friend told me today as she left to keep my big girl panties on!!!!! LOL AND LOVE TO YOU ALL!!! CAT
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Hi Linfer - I think it is normal for the breast to be swollen after surgery, mine was for some time. Keep an eye out for redness, any extra hot area, or if you start to run a fever. Call the surgeon if something comes up or if the pain does not get better. Was the lumpectomy a biopsy? Often they do the sentinel node biopsy at the same time as the lumpectomy. For the sentinel node biopsy they inject something (as lago described) that helps them know where your lymph nodes are and then they remove and check them for any cancer cells. I have a scar under my arm where they took out the nodes.
Hang in there, you will get better I know it seems so hard at times. Hugs to you!
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Granny, I hear ya....I had a really bad chemo nurse one time - I mean, so unkind I almost reported her (I should have). But I also met some that were angels.
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Linfer- I had my nodes done at same time as lumpectomy. I too didn't need to take any pain meds until chemo - back aches as well and advil is what helps me. I do remember that ice was my best friend after the biopsies and the lumpectomy. I iced a lot- really helped. I was swollen for at least 3 weeks and I still have a darkened area that probably won't go away. My surgery was on Aug 6th - it really is like a distant memory. Please try and relax, you will get through this. Take one day at a time and do not think too far ahead.
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OK GRANNYDUKE.....you seem to have been around the block... what do you do about an appt. I had scheduled today for chemo.education. I show up and the nurse is fine explainiong all info..(mind you I have cscans and petscans to determine matastices on mon, first chem starts mon aftrnoon,) She then sends in a financial lady to tell me I have horrible insurense and I need to get online with the info she can provide me to cover costs kinda like a charity case... I have blue cross 5000 deductable which we have already met.....When i got home my husband was furious because I was a wreck and worried... we called our insurance co and they asured us she was grossly wrong.... Problem is I like my oncologist alot but my husband is ready to shop for someone else, cant handle the stress, any help would be appreciated, LCat
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Cat I remember going to the emergency room for a finger that I cut open. By the time I went I wasn't gushing blood but still bleeding. They sent the financial person in before anyone treated me! I am currently being treated by the same hospital/medical center.
Get used to the mistakes. Granted it's annoying at least you know that they are trying to help you out. Better to find out the issue before you get treated then after. You don't want to deal with a financial mess when you are undergoing treatment. At least now you can tell them who to call to verify there is no problem. I'm sure they just mixed you up with another patient. Stinks but it happens.
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Hi again everyone!..Hope everyone is well today!Thank you for advice and info..I am here waiting for my surgeon to call regarding the margins if it is clear or not..Bcoz he only told me about the invasive cancer cells but waiting for the whole pathology result..I hope it is clear margins so i dont have to have another additional incission to clear the margin..I know it would be so painful because they have to have 2 incissions one on my breast and my underarm for the sentinel node biopsy..Oh God i hope i can handle it..Does anyone can tell me how long would be the lumpectomy and sentinel node biopsy procedure be done? Do i have to stay in the hospital or its just an out patient procedure?..It's so hard for me because i dont have anyone close to me to help assist me moving around except my husband and he needs to work..My only hope is for GOD to give strength to move and help myself..I am sorry if i open up my being so difficulty situation here, i just need to vent..I don't know what to do..Help me get through!..God bless us all!..
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Cat - so sorry you had to deal with a financial person that evidently did not do her job very well. In the future tell them you have insurance that fits your needs and they just need to deal with it and leave you alone. You sometimes have to be very blunt with them. I went through the same thing at one of the area hospitals and now they know don't mess with me about the finances. They do not like angry or upset cancer patients causing a scene in their offices.
Linfer - sorry you are still having issues, hang in there and know that we all are here to help. I see where others have answered you so I will just send you hugs and prayers.
Everyone - hope you all are having a good day, lots of hugs and prayers for you all.
Amy Jo
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Linfer - praying for clear margins.
Amy Jo
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cat- I would find out who the head of the billing department is and speak to them about your experience. Let the supervisor supervise their incompetent employees. Just point out that you have enough stress, just going through cancer treatment, you don't need additional stress from incompetence. I always love to use the "I'll gladly trade places with you if you want to sit in my chemo chair" comment. It sort of makes it clear what we are going through.
linfer- I had a lumpectomy and sentinel node biopsy. It was all outpatient under "twilight" sedation. When I woke up, I felt so good I insisted on taking the bus home. My DH just shook his head in disbelief. Once the anethesia worked its way out of my system I was functioning very well. Your breast and armpit will be sore, but you will not be incapable of functioning. They will give you prescriptions for pain meds. I did not have to take any, not even Tylenol. My OR nurse told me to use the ice pack A LOT right after surgery. I think that helped, relatively little pain or bruising. I would suggest stocking your fridge with grab and go kind of meals so you don't have to cook for a few days. Definitely hydrate before and after the surgery. I think you will find it will be more manageable than you think. Let us know how things go.
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Cat: Definitely complain to the supervisor. Just this week alone I've fired a doctor and refused to take a medication another one suggested (I asked for, and got, an alternative). I've reached the point that I'm tired of any bull and I don't care if I get a reputation for being difficult, which I'm not, I'm just looking out for myself.
Linfer: hang in there, it will be ok. The anticipation and the fear of the unknown are the worst parts.
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Linfer - Hello. I had my partial mast (lumpectomy) and SNB on the 12th, Nodes were neg, but unclean margins, so I go back in on the 28th for a re-excision. I am still sore and swollen, and will be having my same incision on my breast reopened in just a couple of days. I was told no ice, and no heat. I am moving my arm with little pain, but just an overall soreness of both breast and underarm area. So Im taking the pain meds and resting. Hang in there, it's a pain in the butt, but not as bad as I expected.I was also lucky enough to not need drains,and thankfully,so far, my breast still looks the same as it did before. I love my BS! lol. He really did an awesome job.
I hope everyone is doing well, seems alot of venting today.
Kristy
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Hi ladies, I got to come home from the hospital. Feel fine, just tired. Hope everybody is doing ok.
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Ladyinbama--glad you are back home! Hope infection cleared up ok. Did they ever figure out what it was exactly?
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TMarina: No, they still don't know. My first cultures were sent off to Mayo and they still haven't gotten back on it. And the fluid they took out of my breast on Tuesday is missing in action. The doc said he want to check on it this morning and the lab said "it's gone" and he says "what do you mean it's gone?" It had not shown signs of growing any bacteria before it turned up missing, so hopefully it was clear.0
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Linfer,
I also had to go back in for another surgery because I didn't have clear margins and the BS didn't do anything about the lymph's. He actually was surprised my path was positive for BC. Anyway, he waited about 3 wks before going back in. My incision is on the left about 3 o'clock so he also was able to do the sentinel thru the same incision. I was really sore from the second incision. The BC said if the nodes were positive or had spread I might have to stay the night in the hospital so they could monitor my stats. He only removed the sentinel node so I didn't spend the night. I took Thurs, Fri off work and went back on Monday.... along with ice packs that I could place inconspicuously under my arm, hidden with my sweater, jacket. Yes it hurt but I was able to limit the meds after Sunday and only had tylenol at work. The BC didn't use a drain so he also had to aspirate me several times.
It's all doable but easier if you know what's to come. Yes, ask for something to numb you when they inject the dye. My actual surgery lasted only about an hour.
Blessings to you.
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