What I Wish I Knew At the Beginning of Treatment!
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april, yes Interventional Radiology can put in a port and I highly recommend it! I had a surgeon put mine in and he punctured my lung. IR actually can see what they are doing on a monitor, while a regular surgeon goes by "feel" to get the tubing in place. Somewhere on these boards is a detailed description of port placement. You will probably be asleep for the procedure.
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Good morning ladies .. I had my port put in on Monday. My surgeon put the port in and did a sentinel node biopsy , I was asleep thank goodness. They took a xray afterwards. I have no cancer in my lymph nodes. I am so thankful for that . AMEN ! I start chemo on December 16. I have been so scared too. It all seems like a bad dream that you can't wake up from. I try to stay busy, but the emotions take over sometimes. There is a lot of information on some of these post from very nice women on this journey. Starting treatments in December is a good wall. Take care.
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Bren58 -- Good to hear another thumbs-up for radiology doing the port!
sophie14 -- My surgeon refused to do an SNB with my Port placement!!! She suggested it face-to-face, but then said later, in emails that KP's policy doesn't allow SNB unless it's done with breast surgery and I am doing neoadjuvent chemo!!!! GAAAH... why is it so hard to get treated properly!???? So, no SNB for me until after Chemo... but I think I'm leaving these doctors behind and getting a new team after all this trouble...
I'm glad everything went well for you!
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- April, my surgeon told us the SNB can tell them a lot about the cancer and what stage it is. My cancer is stage 2a , clear lymph nodes. But because it is HER2 positive 3+ over 2 cm I have to have chemo. The goal is tor the chemo to shrink the mass or the mass disappears. That means the less he will have to remove and that makes him happy. I have a hard time with if there is no lymph nodes with cancer why can' t they just take the breast off. Then the surgeon and MO tell me I may have tiny cancer cells floating around my body so I have to have chemo. Sometimes it sounds like they contradict themselves. I know I have to trust them but it's not so easy to do when I am so scarred. The MO said said if the breast is removed without chemo I would have a 70% chance of the cancer not returning. If I do chemo I have a 85% chance of cancer not returning. I know there are no guarantees with cancer ...
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sophie14 - I asked my doctor if I had both breasts removed, could I skip chemo. The answer was no. I just had a lumpectomy.
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They told me I was going to have to have chemo no matter what I did. So I asked if I could have it first because it might shrink my 3cm tumor and kill the stuff that might be running around my body... and because Perjeta was supposed to help Herceptin work, and it was best done neoadjuvently. It took me a long while to decide what to do: chemo first, surgery first, add Perjeta or not, etc. It seemed like the surgeon, MO and 2nd opinion thought chemo first was good, so I'm happy with that.
It also lets me put off decisions about the surgery! I still don't know what will happen. Maybe my tumor will shrink and all I will need is a lumpectomy. Or maybe that won't work and I'll have to do something else.
I also didn't have much choice about radiation. All the doctors I saw said I'd probably have to have it, so I guess that's it. I don't have a strong reason to refuse, since I haven't heard that it would be a good idea to refuse! Both MO and outside 2nd Opinion were pretty much in agreement, except for adding the Perjeta, which I was all for, which was recommended by my 2nd Opinion and with which my MO agreed after he saw the 2nd Opinion letter. I was glad to have the 2nd Opinion because it mostly backed up the MO, but also suggested other things that the MO had not originally recommended.
--Yeah--there are no guarantees! We just have to try and figure out the best treatment and hope our team is good and can handle changes if other things pop up! I'm hoping all will go well. Why not? We can't know the good or the bad until it happens. That's why I'm trying to stay away from statistics.
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From the original post... I have a really BAD Cop in my sister, who is the only close relative I have left (I'm single, no kids). This is both good and bad, but mostly good, because she really has my best interests at heart and she knows a lot more than I do about medical stuff. I've never really dealt with medical things aside with having to take some meds for Type 2 Diabetes, hpb and chloresterol in recent years, so I'm a total newbie in all this!
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Hi April25;
Sorry you have to deal with all this. It can be so overwhelming. Doing research like you are, is an important part and for me, helps to conquer the fear. Sounds like you're doing a good job of empowering yourself.
I agree with you, the statistics that all the doc's keep pushing at us are confusing. impersonal too.
Good luck with the chemo., let's hope that damn tumor shrinks!
(((❤))) your BC sister Quiggy
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quiggy -- Oh, I'm sorry you have to deal with this, too! You're only about a month ahead of me. But that month is a big month with a LOT of learning being done, I'm sure! (I'm coming up on a month since diagnosis and to someone without bc I seem like a walking encyclopedia on it--but I really know only a fraction of a fraction!)
I'm lucky that the doctors aren't giving me too many stats. Mostly just the positive ones. But they are giving me lots of mixed recommendation for what tests and scans and surgeries and meds... Not TOO mixed... most are in agreement, but some aren't, so it is very tough to know what to decide sometimes. Hopefully they are all presenting ideas that at least won't be BAD! So I guess, pick what sounds good and go with it! Second-guessing just makes me crazy (although it's hard not to do that!)
Anyway--looks like the different choices are narrowing down a bit as I will soon be starting chemo... From there, I guess it's just trying to manage things. After Chemo come some more decisions about surgery! I'm not looking forward to that. But hopefully I'll have some good choices...
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April25;
Hoping you're managing ok with the chemo. I wanted to let you know you're in my thoughts.
Not sure about others, but the holidays have been difficult for me. Too many tasks, too many people to deal with.. Too much when we don't feel good. I went to the cancer center at the hospital yesterday for radiation consult and cried most of the way there and at least once during the 2-hour process. What the heck!!! No reason to cry!
Anyway, your BC sisters are here if you need to vent or whatever.
(((💓))) Quiggy
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quiggy -- Thanks so much for your thoughts! I certainly wish all the best for you, too!
I've started my first round of chemo and it was OK for the first few days, but then totally kicked my butt. But today I'm feeling a bit better, so maybe I can recover enough for the next round.
Awww... this is an emotional thing we're going through, so a few tears are not surprising! I hope you can make it through the holidays and try to get enough rest and time for yourself. I'm sure those around you would understand. Don't be afraid to get the rest you need. Your loved ones will probably feel better being able to help you out (because it can feel like they are helpless a lot of the time, I'm sure they'd want to help).
The radiation sounds like no fun, but everyone says it is not too bad. Hopefully you'll breeze through it with no side effects!
Take care. You are getting through a lot of the really scary bits! I hope you're feeling better!
==April
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Sorry Tonya, I started at page 1 and read page two. I'm just starting dealing with BC again. First time 1996 at 35. Back then 35 year olds didn't get cancer. So 19 year survivor from round 1. Another post brought me to read your post of 'what i wish i knew' just to get prepared. Then I saw you were from OH. So really just stopping in and saying HI from another OHIOAN, (southeast of Cleveland). I see now it looks like your going through it again. Wish you the best. I'm sure I'll be on the boards for another year or two like the first time even though that time wasn't too bad. Just needed the support and loved to give support once I was done. Then really just needed to get it out of my life because it wasn't doing me good. Glad this site is still available after 20 years because it was my lifeline the first time. I still have printed posts in my drawers from back then. One that gets me everytime is, 'Well you can get hit by a bus tomorrow'. Boy that was a great post back then. Hate that people think this is so easy and so what, they can die tomorrow too. Yep like that post talked about, well you don't see the bus coming but I already do and can't do much about it. Don't know how bad I am at this point. Just got electric copy of biopsy path report, it isn't good but also only a couple days after biopsy report, so not a lot of info. But bad enough. Invasive ductal grade 3, invasive mixed grade 2-3 and metastatic adenocarcinoma. So was just here trying to find some stuff info before DR appointment and came across your post. Need to go back searching, so I couldn't read everything here. Best of luck!!!
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I'm, sorry your back, just popping thru, I got a chemo bag together, which is what I learned here, it's very important in the scheme of things, I am always adding to it, and using it too. Was very helpful for the possibilities that can come up. Healthful eating, positive attitude, and use your faith.
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Irm2647,
I am so sorry for the recurrence. That stinks.
So far I haven't had any recurrence...hope I make it 19 years out like you.
Best of luck. Keep us posted.
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Irm, I just wanted to say I'm sorry about the recurrence and hope for the best for you.
Christine
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- I understand what you are saying. My oncol is basically a know it all. Probably because she is in a great cancer hospital. That being said does not make her know it all. It's your body and if feel something is wrong speak up. I ran a low grade temp for 3 weeks got worse each day. It was ignored to finally I went at her and said something is wrong dontvu think we need to test. She did a bladder culture showed positive for ecoli which now on Cipro temp gone. Don't think that doctors are Gods they are han and make many mistake
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Thanks for sharing this . I have been recently diagnosed with triple negative . Had my surgery April 13 , 2015. I have found the medical community is all about the money . Very disheartening . I don't plan on having any treatments unless God would change my mind . Too many after effects and I think it's basically poison because it destroys all your good cells.
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I just found out I was misdiagnosed at the biopsy stage. The test results from the biopsy showed triple positive, with a HER2 of +3, and my oncologist started me right in on neoadjuvant chemo of Herceptin, Perjeta and Taxotere, which I finished and then had a mastectomy of my left breast. My surgeon also removed all of my lymph nodes on the left side of my arm. During surgery, however, the analysis of the cancer that had gone into one of my lymph nodes tested HER2 negative. The original biopsy test was performed at a diagnostic center close to my home, but I was sent to another hospital in a larger city. This hospital has an excellent reputation and I felt very comfortable in their care. When I was told about the discrepancy, I asked my oncologist to re-test the original biopsy (the term for that material is "blocks") and he said he would, but was not super excited about it. My breast surgeon, however, was on it immediately and also sent all samples to an independent lab for confirmation. The results showed that the original biopsy was incorrectly diagnosed. They mistakenly found the IHC test to be +3 (on the most positive side of the scale) so they skipped the FISH test. If they had done the FISH test, they would have questioned the IHC test. Unfortunately, no one along the line questioned the HER2 +3 diagnosis without a FISH test and I had an unnecessary round of chemo. I am now looking at a new round of 2 months of bi-weekly chemo for the correct diagnosis, followed by 5 weeks of radiation, 5 days per week. Given my correct diagnosis, I should have had surgery first and then chemo, followed by the radiation. Moral of the story: Get a second opinion of the biopsy to confirm breast cancer sub-type. I would never have imagined this possibility when first diagnosed, as the concept of breast cancer was so daunting. I hope this helps someone.
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My Darlings.
Thank you all for sharing. All this time I was made to think it was just me. I'm just a horrid human being and the looks I get from the staff are well deserved. SO NOT TRUE!
I had a lumpectomy in 8/2014 and am currently having a recurrence in the same spot with lymph node metastasis. I'm not through my PET/CT scans yet so I don't quite know exactly where I'm headed next.
I have the best surgeon in the area, but the office support staff is the same as any other. You really have to watch them. I wish I had someone managing my care for me so I didn't have to make the follow up phone calls to insurance, radiologists or whoever to be sure the surgeon's staff sent the correct referral forms.
You all know the drill, I'm sure. Let's just hope this year that no machines break mid procedure, like I had happen last year, and the staff is generous enough not to lie to me or try to play CYA when it does.
One specialist asked me why I didn't like the first specialist I'd been referred to. I had a feeling she may have thought me prejudiced on certain levels. I explained to her that I had never met the specialist in question and that sometimes you don't make it past the office support staff.
I'm trying to spare you the horror stories but at one point it got so bad that I left my doctor's office and took myself to an Urgent Care Center. They helped me immediately, after 5 days of my politely trying to get help from my own doctor.
Best wishes to you all and thank you again, so very much, for sharing this thread.
cb
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Hi cb1504,
Truly sorry you're facing this again. You know this is a safe place so let us know what you need. A shoulder, to vent, to cry, to laugh, some input... whatever.
It's your journey, screw those who make it about their feelings. We know to well that it's common for doctors to ignore, dismiss and belittle us.
Hugs my sister
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Hello ginnydeering,
Thank you for your post. As I was reviewing my 2014 biopsies and comparing them to the ones I had last week, I found some discrepancies that I'll be asking about in the next visit.
Thank you for sharing.
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These are excellent tips, TonLee! Thanks!
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Hello !
I'm 62, recently diagnosed with Breast Cancer ER+/PR+/Her ++. Currently undergoing my 4th Chemotherapy . Have been put on Herceptin and Paclitaxel. Thank you Tonlee for this excellent forum!!
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I am 62 and just finishing treatment. I have Herceptin until July. Then I am clear. It is so scary but it does get better. All of you in treatment are going to feel good again! I had Perjeta, Toxotere and Herceptin. I was very sick but I pictured it killing all the bad cells. That helped me get through! There is a lady who posts here who says "Keep calm and carry on!". That is my new mantra!
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Wow so sorry to hear your story. I have had nothing but positive caring doctors and nurses. Sure am counting my blessings.
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Thank you for the plan. Also it helped to see Bessie's post on the nature of the plan. I went in for my second treatment, of 18, and encountered a negative situation. I reacted, voicing my feelings of being ignored while the nurse got on with packing up the center to move in 3 days. I did receive an apology, but not from the main nurse. However, already feeling bad, I felt bad the rest if the day. I had questioned the neglect. I appreciate the power one feels having a plan for questioning when something is not right.
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Wow. I LOVE this original post by TonLee. This is exactly what I needed to hear right now. Thank you!
1. This person works for you. Period.
2. This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period.
3. Advocate for your body like you would a child's, a husband's, a best friend's.
4. No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!"
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"I understand your points. I hear you. But, this is what I've decided. Are you willing to do it?" (Be ready to move on if the professional says no.)
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HapB,
I don't know the woman who started this forum. I do know I reread her words often. Here is what inspires me that she wrote (I pasted the ones that keep me focused):
Sep 2010 Posts: 2,601
TonLee wrote:
Two years I've been on this board.
I've read several accounts of women who struggle with a desire to be polite vs speaking up about incompetent medical care, poor bedside manner, asking questions, asking for proof, etc. Have read them, have experienced them myself!
The vast majority of this heartache seems to come from a hesitancy to be "rude." If like me, you come to this Breast Cancer table a healthy adult all your life, you probably have no idea how to deal with an uncomfortable, even painful situation, in a medical setting.
Don't get me wrong. I do believe most people in the medical community are compassionate, educated, and on top of their game.
But even the best have "off" days. Having a plan to minimize the effect on you is worth the mental toil and preparation!
This isn't just about Oncologists and surgeons. It involves every single person you come into contact with during your tx, primarily the ones who TOUCH you.
I am not a naturally calm retiring personality. Yet, even I struggled with how to be assertive in the medical sphere without being offensive. Doctor knows best, right?
Well.....
Here are a few things I wish I knew going in:
You are going to be in treatment for a while, months, years even, and for some, the rest of your life. More than likely you will run into situations in which you are certain the person is incompetent, dirty, or you simply aren't confident in their ability for one reason or another.This person works for you. Period.
This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period.
Advocate for your body like you would a child's, a husband's, a best friend's.
No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!
Walking out is ALWAYS an option. Barring emergency medical tx, there isn't anything that can't be rescheduled as far as I'm concerned. A few days won't make much of a difference, and even if it does, so be it.If someone makes me uncomfortable, doesn't wash their hands before touching me, seems overly nervous, ..in short if I feel they do not know what they are doing, I will stop the procedure immediately. Explain, in a nice way, that I am not comfortable and have no confidence in their ability, and would prefer to reschedule/have them call for a replacement/etc. Insist on it.
Here are some of her "go to" phrases:
1. "I'm not comfortable with this. Would you mind finding someone else to do it?"
2. "I understand your points. I hear you. But, this is what I've decided. Are you willing to do it?" (Be ready to move on if the professional says no.)
7. "Can you give me the research to back that up?"
I reread her original post about every month.
Ask you MO for their research showing that there is no difference.Having been in your shoes, I would ask for the TEVA brand from your MO. Try it for about 45- 60 days and record every SE. See if you can tolerate it. You may find that it works.If not, show your MO your SE Spreadsheet an demand the name brand. If your MO won't do it, fire him/her. Or stay with someone who is not supporting you and go directly to the website for the brand name.
Vicky
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Great reading this. Thank you for putting this together.
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Thank you Tonya... Helps for sure!
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thank you
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