2013 Sister Warriors
Comments
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Hi all,
So I found out the lump under my arm is an infection and I am on antibiotics. My breast surgeon does not want me to go into surgery with an infection, so on Friday if it has not gone down enough she will "lance" it, ack. Although, considering what we are all about to go through, it whould not be a problem.
Jo606, thanks for your kind words, I am working until a few days before surgery and came back to 532 emails....no stress there!
My breast surgeon gave me a mastectomy care package today that volunteeres put together, it was actually quite wonderful. There were two pillows in in , a man's cotton shirt, note pad, cards with stamps, gauze ribbon and a few other things. More importantly, it explained the role each item serves post surgery. Such a kind gesture, bless their hearts! It made me think other than having pyjamas that open what are you all buying in preparation for surgery?
Also the doctors are trying to move my surgery too the 6th. I told her I would come whatever day they wanted me. One more question, anyone using any over the counter sleep aids?
Thanks!
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This is first time I'm actually going to say "hurray" for an infection versus you know what.
. after my diagnosis and before surgery, I was so stressed out that I needed sleep aids. My doctor prescribed me ambien, so I didn't use any over the counter sleep aids. My hubby uses melatonin on occasion if he has trouble sleeping.
Your doctor's office sounds awesome and thoughtful with the package. For surgery, I had to stay a few days in the hospital, but all I brought there was my phone, charger, iPad, and a comb with a change of underwear and used the supplies at the hospital (I was too out of it to care). For home, I used my recliner and bought stool softeners such as Miralax and Ducolax since the anesthesia will leave you constipated. I had a small notebook to keep track of all my meds and when I took them so I didn't double dose on anything. I also used that to take notes on how much each drain output. I had huge oversized shirts, comfy yoga-like pants, some with button ups so i wore that to doctor appointments, a small plastic chair for the shower, and a lanyard where I clipped my drains during the shower.
Hope that helps!0 -
Hi, all. Add me to the group. Was diagnosed yesterday afternoon but don't know much yet other than IDC and grade 3. Of course, I can't sleep, but that has given me time to do some preliminary research, which led me here. A little about myself, I'm 40, married with an 8 year old DD. And I'm pretty scared.
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Vanessa, so sorry you have to join this group, but there is a wealth of info and support here. This site has helped me more than I could ever say and hope it will for you too. I fully understand being scared, uncertain, etc. all the normal feelings after being diagnosed. Keep us updated on further details, I am grade 3 as well and had a microinvasive IDC. Once you have your plan in action you will feel a little more in control, hang in there, everyone on this site has been there and we are all here to help you thru this terrible time, you will make it tho, not a picnic but you can do it!! Hugs and prayers sent to you.
Linda
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VanessaJ, SORRY we have to meet this way. It is scary but hang in there. I was Dx on June with poorly bad tumor, high grade aggressive tumor. I am 39 with two kids 11 n 8. Right now I am just trying to be positive, take one step at a time, exercise daily and do whatever I can to fight this beast. I kno someday I have my up n down bcus my kids are too young.
We will get thru this!0 -
Thanks for the supportive responses. I have my first consultation with the surgeon that my doctor recommended tomorrow afternoon. So I hope to know more then. Thanks again, and I'll be sure to come back with an update.
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VanessaJ-- we're all with you and do let us know if you have any questions. Being in this position sucks but I think I picked up this quote from a BCO signature (might have been Renee's signature in the past): "You don't know how strong you are until being strong is your only choice." I found that so true this year after being diagnosed and essentially being scared shitless (sorry, BC calls for some profanity). The good part is that you know you will fight through this, not only for yourself but your family. I agree with the folks before, that this site and the support of the BC sisters and their advice has been so good to me. I also tapped into the Young Survival Coalition (YSC) boards and meetups -- targeted at women 40 and under diagnosed with BC. There's a lot there about BC and having young children as well. If possible, bring someone with you to your appointment -- there's only so much you end up hearing and digesting from all the information thrown at you so the person can be a notetaker, a second pair of ears, and moral support as well. Hope to hear back from your appointment!
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Thanks so much for your encouraging words. I had my appointment with the surgeon yesterday, and here's what happened. First, I now know I'm ER-/PR- and HER2 equivocal, and I already knew it was grade 3. I also know that my surgeon leaves today for a three-week vacation and his first couple of weeks back are already booked. That means no surgery until the second week of October at the earliest. I told him that the delay worried me as I found the lump on August 9, meaning a two-month delay between detection and surgery. He swore to me that the delay would have absolutely no impact. Gave me the "cancer is not a medical emergency, only an emotional emergency" speech. Seems to me to be a medical emergency. Anybody else have a similar experience?
I had two doctors give me physical exams, and they felt no abnormalities elsewhere. I understand that's absolutely not a conclusive indicator, but it did give me some comfort that there were no obvious additional abnormalities. He's sending me for an MRI, which will be on Thursday. He's also sending me for genetic testing for BRAC. Once we get all the results, we can figure out a surgical plan. He said all the testing takes time in any event, so the surgery delay isn't unusual.
Finally, he is certain that given my age (40) and the grade of the tumor, I will need chemo. He suggested that maybe I would do chemo first before any surgery. I've seen others on the boards here that have done chemo first but the vast majority of people have their surgery first. Really not sure what the pros and cons are of each.
Sorry for the long download. I'm just confused and overwhelmed. Thanks again for the support. I really do appreciate it.
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Vanessa, it is overwhelming. But it will get better--you'll be versed in BC terminology and have an understanding of what is going on with you, the treatments/process.
My understanding of doing chemo first--usually for those with a larger tumor that they are trying to shrink (?). I wonder, since your surgery can't be until October, that they just want to go ahead w/chemo now (?).
As for the wait time--what my dr. said was: it has taken years to develop to the point that it was found; things are not going to change in a matter of weeks. I had my surgery 8+ weeks after I was dx w/BC. I had a big conference I was organizing (in charge of). If my life was on the line, of course I would have dropped everything. There were things going on between my initial dx and surgery: I got an MRI, BRCA test, second opinion and decided to go with another dr./center, consult with a plastic surgeon, make decision about single vs. double mastectomy... And, I read and read and read about BC, surgery, treatments, breast reconstruction (BCO and the discussion boards are great resources). Felt like I was taking a course and cramming for finals--only instead of a test, it was getting surgery. Shopped--for things I needed at home for recuperation, made sure house was stocked up so my husband had to do minimal shopping. Told people, and a friend set up a website to arrange meals so we didn't have to deal with that for a couple weeks post-surgery (and was a good outlet for friends who felt bad and wanted to do something).
You can do this Vanessa, and we will be here for you!
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Vanessa --
So sorry you have to go through this, but you have found your way to a place where BC sister will provide support and information -- welcome! Others have given you responses I would echo.... The only thing I would add is that it is very good that you are getting an MRI and the genetic testing.
In my case, the MRI showed another area of cancer in the same breast that was invisible to mammogram or ultrasound. I ended up having a second biopsy -- the new information was critical to decisions about surgery and treatment after surgery. So by the time I had surgery, I had 3 mammograms, two ultrasounds, MRI, stereotactic biopsy and MRI-guided biopsy....all that imaging makes us pretty sure that the surgeons "got it all.". Also, since we know now that some areas of my breast are dense and BC can hide in that tissue, I will be having annual MRIs going forward.
The genetic testing also provides crucial information which will go into your decision-making. You and your doctors have an array of options depending on what is found in the testing. You want to take the time to get all of the information so that you can make informed decisions.
My BC said that everyone's impulse when they get a Dx is "get that @&$! out of me ASAP!" I think it takes awhile for us to come to grips with the dx and one aspect to the psychological process is the thought that if we get it cut out as soon as possible then we can just return to normal as soon as possible. But taking the time to get all the ducks in a row before decisions about surgery will contribute to your peace of mind afterward so that you can kick BC to the curb and move on with life. I know it is hard, but try to be patient with the process.... And as Renee suggested, educate yourself as much as possible, realizing all the while that we are all different -- so your decisions have to be made for YOU and for YOUR life and for YOUR cancer -- one size does not fit all.0 -
Thank you all for the kind words and thoughts. Surgery really kicked my butt! It took me at least 6 days to feel even the littlest bit better. If someone would have asked me during the first few days if I would do it again I would have quickly replied NO THANK YOU! I am happy to say that my body and my mind have recovered quite nicely in the past two days! I am still getting used to the tightness in my chest and numbness in my arm but it is so much more bearable now!
I did find out that all of my lymph nodes were CLEAN!
That bit of information was huge for my mental well being!
This site has been a great source of strength for me - thank you all for sharing your stories and support!
Much love - Flutterbug
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I'm a little freaked out right now because my tumor feels bigger today than it did on the day of the biopsy, which was on 8/27. Do they swell after a biopsy? I do have a lot of bruising. Could it be the tissue surrounding it? I have an MRI Thursday. Will that indicate whether the size has changed? I should also mention that it hurts a lot more too.
And Flutterbug, I am happy to hear you are feeling better! Great news on the clean nodes!0 -
My tumors felt swollen after biopsy also. Try not to worry about that if you can. I also had a lot of bruising after my biopsies. The swelling should go down.
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Flutterbug, that is great news, clear nodes, yes! hope you will soon be feeling a little better and stronger, it just takes time! thanks for sharing the news.
Vanessa, sorry about the scary feeling, I dont have any thoughts about that swelling as I couldnt feel my tumor, cancer was calcifications with me. But sounds like it is reasonable to be swolled after biopsy. Try to stay calm but I know that isnt easy either. We are all pulling for you!
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I was swollen and bruised after biopsy as well -- like ndgirl, I had calcifications and then a spot also showed up on MRI -- nothing which could be felt.... But after each of my two biopsies, I developed hematomas and those were sore, swollen and felt as a hard lump. I still had the second one when I had my surgery, and the marker they inserted with the biopsy was in the hematoma.
So there are lots of reasons you might have more lumps and bumps, Vanessa -- try not to worry, I know it is hard, but hang in there.
flutterbug -- YAY for clean nodes!!!!! Joining you for the dance of joy! Glad you are turning the corner physically with recovery as well.... Each day gets a little better....0 -
Vanessa,
I also had swelling and bruising after biopsy. Doc said it would clear in about three days. Well it took two weeks but each body is different. Try not to worry unless it becomes hot or so swollen that it becomes very painful then you may want to have it checked for an infection.0 -
Clean nodes--I'm happy dancing for you Flutterbug! You did go through some major surgery, and takes a while to recuperate.
Vanessa--I would think you are experience pain and swelling from the biopsy. An MRI can show other suspect spots; if thought to be cancerous, they would order biopsies on those other areas. Please know that an MRI, while a great screening tool, can show a lot of false-positives. There's a saying on this board: "Don't go there if you don't have to go there." It is hard to do, but does take time to work through the diagnosis part and really understand where you are at. But assuming the worst doesn't help, and will create even more stress. I found another lump on my breast right before my surgery, so my dr. took that off during surgery; it was tested and came out benign. Not all lumps or spots, even when you have BC, is BC. Hang in there girlfriend!
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Hello, this is my first time posting on this forum. I usually hang out in the lumpectomy lounge, but thought I would introduce myself to some fellow sister warriors. I had a bilateral lumpectomy and bilateral sentinel node biopsy a little over 3 weeks ago. I have IDC in both breasts (synchronous bilateral breast cancer). My pathology report had a few surprises. Both tumors were about twice the size originally estimated. There was also a small amount of cancer in the left lymph node. And as I mentioned above, IDC (instead of what was originally thought to be DCIS) in right breast, as well as the left. Now I am in limbo land waiting for my appt. with my MO next week. It has been pushed back 3 times already. I don't know if I am going to need chemo as well as radiation. I feel like my life is on hold not knowing my next step! At first I was afraid of needing chemo, now I am almost equally as afraid of being told I don't need it. I am worried about the micromets found in the sentinel node. Anyone else still in limbo land? I'd appreciate any support!
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Hi L2girl, and welcome! You got the news that no one wants to get. I am guess that they got clear margins w/surgery, since I don't hear you talking about BMX at this point; is that the case? I know what you mean about chemo vs. no chemo. I was one who did not need chemo (or radiation, since I had a MX, and got clear margins). Have you officially been staged yet? What about Oncotype testing (which would tell you how you would benefit from chemo)? I am guessing the latter you will be talking with your MO about that. You should demand from your MO a thorough explanation of what kinds of treatments there are and how they would benefit you. And, you may have an MO like mine, who explained things well. Following that, with the other recommended treatment for me (ovarian suppression, tamoxifen), I feel good about not having having chemo.
I would think though, w/a positive node, that they may want to go forward with chemo. http://www.breastcancer.org/treatment/chemotherapy/who_gets_it
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L2girl -
We met on the Lumpies board.... I am sorry to hear that the SNB showed some micromets -- I can understand why you feel a little frustrated with the waiting. Why were your appts pushed back? Are you waiting on the results of genomic testing on your cancer tissue?
I too am in limbo land, but did finally meet with my MO last week. It was a great education about what possible treatments there are and how the decisions are made. Bottom line for me, the Mammaprint (like Oncotype) test is not back yet, so we can't decide on whether or not I get chemo. Chemo would come before rads and before hormone therapy, and so we need to wait for the test to come back. The very personalized treatment decisions require specific and detailed information.
Having at least met my MO and talked about it, I feel better now about the waiting. Maybe see if you can get in for a consultation to start to talk about the treatment options with your MO while you are waiting for tests, if that is your situation. Hang in there and keep us posted!0 -
Thanks for your responses!
ReneeinOH,
Yes, I did get clean margins, and my BS said that as far as he was concerned, "no more surgery is needed". I know there are not too many out there with synchronous bilateral breast cancer (cancer in both breasts at the same time), and of the few I've come across reading these forums, they all seem to have BMX, but so far I am the only one that had bilateral lumpectomies. Guess I could call it BLX? Thank you for explaining that there are many other possible options besides chemo. (BTW, I love your avatar!)
TeamKim,
Yes, my appts. have been pushed back due to a number of things, including MO being out of town, and also him not being kept in the loop about my recent surgery, etc. But mostly because we are waiting for genomic test results. And because of them having to send out 2 samples, etc. I know it is important to wait for all test results because the more info the better to help make the right decision, but it is just hard to wait. Anyway, I really like my MO and know that he will help me make the right decision for treatment. And you are right, everyone will have a very personalized treatment decision. If you can wait as long as you have, then so can I! Thanks for the vote of confidence, and good luck to you, too!0 -
So sad to see so many new members! The cancer center at UVa just announce an amazing new treatment for breast cancer patients! I will not try to describe it but give you the news link:
http://www.nbc29.com/story/23329117/uva-offers-one-day-breast-cancer-treatment
I was diagnosed 10 months too soon! What a wonderful opportunity for those that will follow my path! There will be a cure!!
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Wow, wouldnt that be great? to be done in one day, of course I see it is only for early stage bc, I agree, guess i too was diagnosed too soon. Yes there will be a cure! my prayer every day. Thanks for sharing that interesting article.
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JPH,
Thanks for the link...I think it's the same treatment that some hospitals have allowed only 50 and older patients so far...? Not sure though...0 -
HI Everyone. Glad to see this forum.
I was disgnosed with Invasive Ductal Carsinoma on July 19th - had a lumpectomy with sentinal( took 9 ) node disection on Aug 19th- Nodes were clear, margins were clear.
I am starting internal radiation this coming Fri with surgery to insert the balloon, then a CT scan to see if it is where it belongs. Monday through Fri I will have a CT scan each day followed by two radiation treatments and on Friday if all goes well i should be done with radiation. Has anyone else had this?
I am waiting for my ONCO DX test to get back so I will know about chemo. They tell me though I was stage 1 grade 2 that because of my age they are thinking 18 weeks of chemo. I think 18 weeks WOW- isnt that a whole lot?
I am scared. it all seems so unreal and nothing is written in stone. I swear the doctors are letting me chose my own course of treatment and I want to say HELLOO. what do you think I should do? '
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Nd,
Welcome...short version: Research like crazy and get a few--2nd & 3rd opinions.
More / stronger treatment isn't always better. You have to weigh possible side effects, the serious & long lasting ones AND the ones that will affect quality of life issues...don't rush your decision.
I know it's all so overwhelming though...
Violet0 -
Good advice Violet, ndgrrl, wow we have a very close id name dont we? I had to look twice when I saw this post! I sure understand being scared, we have all been there for sure, I so believe in 2nd opinions and take someone with you because our brains and thoughts are on overtime and it is so easy to miss something or misunderstand as well. Best of luck, we are all on your side of this!
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Ndgirl and Ndgrrl I had to do a double-take to make sure I was reading things correctly!
Ndgrrl-- another vote for a second opinion here. I'm 33 (I like to consider myself still fairly young hee hee), and I saw two oncologists. Neither of the two oncologists would give me chemo, even with my age, particularly after my Oncotype score came out, which was an 8. I was really scared either way...it's really a damned if you do and damned if you don't thing. There are just so many factors and so many ways that the doctors approach things. The best thing to do is to get the multiple opinions and fight on. We will all be there for ya.0 -
Thank you for the responses.
NDGIRL I also had to do a double take when I saw your name. This name has been an e-mail name since I took some college classes. Really I do know how to spell!! LOL..
I have had two opinions on the internal radiation and both doctors felt I was a good candidate for it. I just wish I knew someone else who have had it.
As for chemo the ON said I would qualify for a clinical trial. Not sure I understand all what that means. Why do people participate in them? Are they cheaper, or why would a person want to be an "experiment?" I basically told the ON this as well. He really didn't know what to say - Only that I didnt have to decide until my Onco DX test comes back. hmmmm...
Did anyone require physical therapy on the affected side? I am 16 days out and my arm still has limited range of motion- I try to stretch it and it lets me know!
Thanks again.
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Ndgrrl-- it takes time on the ROM, but physical therapy could never hurt. It was waaaaay after two weeks for me to even feel like I was close to normal.
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