Chemo before surgery????
Hi,
I was diagnosed on 4/16 with IDC that is TN. I have been going through testing to determine size and margins. As of now there is no skin or muscle involvement, and it appears as if the nodes are clean also.
I am having issues getting coordination with both a plastic surgeon and a breast surgeon. They are now talking about delaying surgery until all chemo treatments are completed. Has anyone else done chemo before surgery? Were you off work the entire chemo series?
I'm concerned about trying to manage my paid time off at work to cover the unpaid days at the start of my short term disability that will cover my surgery. Any suggestions or input is greatly appreciated.
Comments
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If you can get chemo before surgery, be grateful.
My dw had surgery first and is going thru chemo, which as not gone well. Now, she's recovering from surgery AND dealing with chemo. It's kind of like the first layer of hell, since her chemo is ridiculously strong.
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My SIL who was diagnosed w TN bc last fall had chemo prior to her surgery. The tumor responded very favorably and shrunk a quite a bit prior to her lumpectomy, which was a very good thing indeed. She is retired, so I'm not sure if she could have worked during chemo or not, but it seems from reading here many people do, or at least they are able to work a modified schedule.
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Thanks for the reply. It was just a shock to hear about doing chemo first when all discussions to date have been surgery then chemo. I am working to adjust my thinking to this new plan.
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Thanks! I was wondering about how the healing might be impacted by chemo after only a few weeks of healing.
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t100angel, Welcome to BCO. I also had chemo before surgery (called neoadjuvant therapy). I've included a link below for you to read.
http://www.breastcancer.org/research-news/lumpectomy-after-neoadjuvant-chemo
I had the advantage of knowing the chemo was working on my TN tumor. My TN tumor shrunk down to almost nothing, and I was able to have a lumpectomy. My surgery was scheduled a month after completing chemo. I didn't have any healing problems.
It can be overwhelming at the beginning, but once you have your treatment plan in place, it does get a bit easier. Sending best wishes and gentle hugs to you.
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SlowDeepBreaths,
Thanks for the link. I'm still a little stunned by the abrupt change in plans made today by my team. My big reason for wanting surgery sooner rather than later is the pain in my breast where the lump is. It's been there for almost 2 months and is most annoying. I'm also concerned about how much time I will be away from work during the chemo treatment, thus using my paid time off before my surgery, resulting in a loss of pay (I'm single so it's only my income). My short term disability (STD) pay only kicks in after 7 days from the start of the STD. If I use all my paid time off (which I used some already this year to move as I hadn't found the lump yet) for chemo, I will be short on funds to pay my bills.
My hope is that I'm BRCA clean in my genetic testing, but with my mother having had BC in 1999 in both breasts, I'm worried about it developing in my other breast.
Thanks again for the link. I look forward to learning more.
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Hopefully you'll get the chance to ask them about the sudden change. I'm sure they want to get chemo started ASAP. In my situation they were worried about slow healing from surgery which would have delayed chemo.
We are all so different on how our bodies will react, but I know there are many people on these boards who worked all through chemo. Hopefully some will be along to give their input.
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Hi, TAngel and big hugs to you.
I had 6 cycles of chemo every 3 weeks and this is how it went for me. Tuesday's were my infusion day, so I missed a total of 6 days (which wouldn't have been necessary to miss the whole day if the center was more efficient and on time LOL). On Wednesday after treatment, I had to go to the center to get a Neulasta shot, so I was able to do that during lunchtime. On each Thursday and Friday after treatment, I started feeling like I had the flu and that lasted through Sunday. I was able to work remotely from home on Thurs and Fri, but I remember that on one of the cycles, I was unable to work those days. All in all, I missed 8 days, with 10 remote working days. Make sure that you let your onc know that you want and need to work, so that they can accommodate an optimum treatment schedule that allows you to recuperate on the weekends... and manage side effects. My onc was very supportive of me working, in fact she insists that her patients keep a normal schedule.
Now, all that said, I am not single. My husband took care of everything.....household duties, shopping, food prep, etc.so I could rest. If you do not have people who can support you, clean house, shop for you and bring meals, that may affect your ability to work. By the end of chemo, I was so tired, but I made it through and the non-chemo weeks were pretty easy except at the end when recuperation from chemo week dragged out a few more days.
I hope this helps. It is one person's experience and you are a unique and special person....Above all, be good to yourself and put your health first.
I had a lumpectomy. I had the surgery on President's Day which was a company holiday and worked from home for the next 2 weeks, so I didn't miss work for that. I was very able to work....the issue was that I couldn't drive and I was unable to dress appropriately for work until the incisions healed enough.
I hope your employer and/or your job allows you to work from home.
:Love, MsP
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my biggest regret is doing surgery 1st. I have no.way to know if chemo worked.
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MsP,
Sadly my employer doesn't give my group the opportunity to work from home.
Thanks for all the great information. I can see how this can be worked in to a lifestyle. My concern is that I have a 45 minute drive with a manual transmission truck, and that one of the components of chemo (that they are suggesting at this time) is something my mother was allergic to during her treatments. I'm also allergic to the same group of chemicals, so I'm expecting to have a stronger reaction than most people do. The last time I had medication in this group it would cause increasingly intense bouts of nausea after each dose.
As of now, we know there is no skin or muscle with cancer. They will be doing a node biopsy on Thursday to confirm if there is cancer in them prior to chemo.
Next week is the most trying week. I work swing shift (1pm to 9:30pm with 45 minute commute each way), so all my appointments are before work. Tuesday I have to drive 45 minutes for a 6:45am appointment, Wednesday I have to drive 15 minutes for a 6:45 appt for the bone scan and CT scan. Thursday I have to be at the center at 8am for my biopsy, and Friday I meet with my onco for results and to plan.
I'm looking foward to starting treatment so I can get on with my life!!!
T100angel
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jenjenl:
Why do you regret doing surgery first? Did you also do chemo?
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T100angel, hugs. Once I had my plan in place, I felt oddly energetic. I hope you are able to tolerate the medicine and that you can juggle your job responsibilities. This is the toughest time, for sure. I remember cleaning out all my closets just to keep busy and not be thinking about the unknown so much. That helped (and my closets were so organized!)
MsP
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MsP, thanks!
I have felt a lack of focus on getting things done around my house only because I'm in a holding pattern for my treatment. I think once that is established I will be more able to focus again.
T100
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t100, If you have to have the Neulasta shots like me and MsP, you may be able to give them to yourself. My MO let me. That saved a day of going back in. Just a thought.
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SlowDeepBreaths,
I've never given myself a shot. What does Neulasta do? What is an MO?
So much to learn, so little time.
My treatment center is only 10 minutes from my house, but my work is 45 minutes away. I'm going to talk to my oncologist about possibly going on short term disability for my chemo so I don't miss too many days of work.
t100
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Neulasta is a shot given when your blood counts drop. It helps to reduce the risk of infection.
MO = Medical Oncologist. Here is a link to abbreviations that may help you on the boards.https://community.breastcancer.org/forum/131/topic/773727?page=1#idx_1
Not everyone needs Neulasta. But in case you do, I just want you to know it's an option to self inject. They teach you how and it's very easy, and it also saves you taking more time off work.
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Actually, in my oncologist's practice, Neulasta is routinely given the day after chemo so that the blood drops do not happen. Even so, I had to postpone 1 chemo becaue of low counts. Thank goodness I had the shot because my blood counts would have been even lower.
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I will find out more next Friday. My bone scan and CT scan are Wednesday, lymph node biopsy Thursday and MO visit on Friday for results and I'm guessing a plan of treatment.
SlowDeepBreaths, thanks for the link. I will check it out.
I know I will be getting a port for chemo, as my skin and veins have very sensitive nerves that cause lots of pain.
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hope your well! Chemo 1st tells you if the chemo killed the tumor.
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Thanks jenjenl. I had my PS consult on Tuesday and he said I'm a good candidate for the DIEP reconstruction as long as I don't have problems with side effects if I need radiation.
The CT and bone scans were done today, and my MO should have results by Friday. I'm going to ask for my port to be inserted soon. After several blood draws, and associated pain as I'm very sensitive, I want the port before they do any other blood draws.
Lump biopsy tomorrow morning. Hope they don't find anything.
t100angel
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Hey, folks! Chiming in here as a newly-diagnosed TN patient just joining the "club no one ever wanted to join." This really, really sucks.
I'm doing AC chemo for 2 months (every other week), to be followed by Taxol (with possible Carboplatin) once a week for 12 weeks. Then a break, then surgery, probably in Jan. or Feb. '16 (TBD).
Just completed round 1 of the AC; taking all of the meds as prescribed. Was advised to "not be a hero" when dealing with the side effects. Um, yeah. I feel like shite. If this is the worst I'll be feeling, though, then I think I can handle it. Only time will tell, of course. UGH.
My port's constantly making its presence known, which is absolutely irritating. My onco doc/nurses have said that I need to give it a few weeks' healing time before freaking out that there's something wrong with the port site. Meh. I don't do pain well - turns me into more of a b*tch than I already am! I've got Ehlers-Danlos syndrome to boot, which just exacerbates any/all bodily pain and fatigue. *Sigh*
Glad to have found this wonderful community; horrified that there're so many of us...
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I'm also a chemo before surgery person. Actually I'm a chemo and then radiation and then surgery person. My tumor is too big (more than 9cm, starting to protrude out side of nipple etc) and there are are too many "involved" areas under the arm to not attempt to shrink it first.
I was all psyched up for surgery then was told, nope, have to wait. Then I psyched myself up for AC first and then nope, weekly taxol for three months then AC the following three. All this has done is shown me that I can't make any firm plans and things can change. I still have my appointment to see about hereditary screening which may change up surgery plans. Sigh.
I just finished week 7. My tumor is softening and shrinking a bit. My oncologist doesn't think it will shrink to nothing but it is getting softer. The part that was growing out making it look like I had a second nipple is gone, although my nipple still doesn't look normal and is still inverted. Overall I'm happy knowing there is progress and that this hell called chemo is 'worth it'.
PET scan showed that pretty much every node in my upper right contains cancer, although only 3 under my arm are palatable. The three have not softened or shrunk at all yet and my Dr says that the volume of node involvement will make radiation and surgery more intense so I don't mind delaying them.
So far I've been able to work through treatment and be single parent to 6 year old twin boys. I am off every Monday for treatment and work is accommodating (for now). I'm slower for sure. I am capable of working though, but if I wasn't a single parent with no other income I would benefit from being off.
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Hello all! I'm so sorry we are all in this club!
I too had chemo first! I'm glad it went that way for me. I was able to first hand feel the change in my body. I was also glad to know that before surgery, my cancer was annihilated. My lump was smaller and I could still feel it, but it was a dead mass. At first I wanted it out before chemo but now I know the treatment I was given was super effective. I'm 2.5 years out from date of diagnosis, and there is never a day that I forget what I went through and what I still emotionally go through. I try to channel positive energy and try to help others who are going through this nightmare. It's how I emotionally survive, trying to help others outsmart this nasty cancer.
The worst part of cancer for me was not having a plan for 10 days.. The days of shock and slow response from the first hospital I sought treatment from are something I pray other women don't needlessly have to go through. The best patient is educated about the disease and the treatments.
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hello,
I am so pleased to find an active triple negative thread!
I had my surgery first about four weeks ago (BMX due to a positive BRCA1 test) and will start chemo on Monday. I was told that the tumor was quite small so they there was no need to shrink it. Also, they could not tell if it was in my nodes until surgery. They strongly thought the nodes would be clean, but sadly, two had been infiltrated,
Adarkadapted - I will get the same chemo regimen as you, four every other week of AC and then 12 weekly Taxotere with Carboplatin. How has it gone so far?
I haven't found anyone who has gone through the weekly TC and am quite curious/terrified of the unknown.
Wishing everyone well with whatever stage you are at!
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Welcome to all the new people! For those just starting chemo, I hope all is going well so far.
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Well, it seems that my gung-ho attitude was misplaced/premature. HA! Yeah...
Days 2.5 through about 6 were pretty rough. The fatigue/"woozy" feeling was very mild on chemo day and the following day (i.e., Neulasta day), but by that second night, I was already feeling lethargic. The next morning (day 3), I felt like I'd been hit by a bus. I was warned that I'd be fatigued, but this was like no fatigue that I'd ever experienced before. The Ehlers-Danlos has me in a perpetual state of low-grade fatigue and whole-body pain as it is; the chemo magnified that to the point where I couldn't sit in front of my computer for more than about 5 minutes at a stretch because my body/brain/psyche were all screaming for me to lie down. I drifted in and out of a weird fugue-like sleep/wake cycle all day, every day, for about 4-5 days. I couldn't get anything done except the bare minimum–showering, drinking loads of fluids, taking heaps of pills, and eating the few foods that I could stomach. I dreamed vividly, and felt very disoriented–kind of like that feeling when you have the flu with a fever. Though I was never actually feverish, I also noticed what I'm guessing were chemo-induced "hot flashes." I envy you lot who're able to work through the chemo; I couldn't even *think* properly. The smallest chore became a massive effort that seemed, suddenly, to be utterly unimportant (clean dishes/clean clothes/clean apartment: who needs 'em?").
I noticed some freaky things during that chemo-induced forced "imprisonment":-My EDS causes my feet and hands to be cold/freezing in any air temp below about 65F. During the 4-5 days after my infusion, my hands and feet were actually warm to the point of discomfort!
-Any food, beverage, or utensil that was even remotely metallic-tasting caused an immediate gag reaction.
-I couldn't move very fast, no matter how forcibly I willed myself to do so. I felt like I was 80 years old and slogging through molasses.
-The brain/body/psyche "fog" burned off around the 6th night without warning–I was suddenly wide awake and mentally clear, with my chilly hands/feet back to normal.
-And then, of course, I couldn't sleep.
Some DOs from Round 1:-Take Claritin (or generic loratadine) to thwart the Neulasta-induced bone pain. I take loratadine for allergies anyway, so this was a no-brainer. I felt a few twinges here and there, but the pain was pretty much nil (whereas my poor mom, who'd had Neupogen with her chemo all those years ago, felt like her limbs were being hit with a baseball bat).
-Drink prune juice!The stool softener that I was advised to take kept everything...erm...pliable, so to speak (*barf*!), but did nothing to address the lack of feeling the actual need to go, as it were. I happen to love prune juice, but I'm pretty weird, so...
-Use biotène dry mouth rinse and toothpaste. Not as breath-freshening as mouth-scorching brands, but scorching your tongue/mouth tissues is the last thing you want during chemo! OY.
-Practice obsessive hand hygiene.
-Eat stuff that's palatable so that you get at least *something* in your stomach. Though the powerhouse Decadron and Compazine (never needed to take the Zofran) kept the vomiting totally at bay and the nausea to a minimum, I didn't really want to eat anything. I suddenly had a bizarre craving for fake mashed potatoes and uber-salty jarred gravy (stuff I'd normally not touch with a 10-foot pole!), so dutiful DH made a special trip to the g-store so that I'd have something to eat. I was like a carb fiend! Blech.
-Get outdoors when you feel well. My brother just got a small-ish boat, so I've "allowed" family to take me on short boat trips in the fresh air (even though I was close to napping the whole time during those first days).
-Keep your port area covered while outdoors, as the area/scar will easily get sunburned.
-Wear a hat/sunglasses and use high-SPF (preferably natural) sun protection when outdoors, because everything is going to be way more sensitive than usual and a sunburn's going to make you feel even more crappy than you already do!
-Eat iron-rich foods because the chemo can cause anemia.
And some real DON'Ts:
-Alcohol. Really, just don't.
-Spicy food. O.M.F.G. PLEASE don't eat the spicy guacamole and the jalapeños when you're feeling better and suddenly wanting to devour your favorite foods (like I did).You probably WILL pay for it (like I did!) with GERD and tongue/mouth sores. My onco nurse yelled at me when I told her.
Round 2's scheduled for the 21st; here's hoping! I'm perpetually anemic due to hideous uterine fibroid-induced heavy monthly bleeding (read: more like a monthly hemorrhage), so my onco doc's interested to see what my counts'll be like when my labs are drawn on chemo day. I just hope that they won't have to transfuse me... -
adarkadapt: thank you for the very detailed description and list of recommendations! Don't you just hate when your early optimism is slammed with reality? I'll follow close behind you starting Monday.
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Peabrain: I've only just completed Round 1 (of 4) of the bi-weekly AC (Adriamycin + Cytoxan) chemo. I'm still terrified of all of it! I won't be starting the weekly Taxol (+ possible Carboplatin) until around September...
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Hang in there ladies! Treatment will be over before you know it and it will all be a distant memory.
adarkadaptedi, not everyone gets really bad side effects. Hopefully that will be the case for you.
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Chemo before any other treatment is thought to be the best way to treat TNBC. TNBC as opposed to other breast cancers is very vulnerable to Chemo.
I am BRCA1+. 1 in 40 people of Ashkenazi Jewish Descent have BRCA1 and/or 2 Mutations. 1 in 600-800 people in the general population have BRCA 1 and/or 2 mutations. I was tested because I had TNBC and I am half Ashkenazi Jewish. I am, however, the only one, so far, on either side of my family who has ever had Breast Cancer. My Aunt died of Ovarian Cancer in 1992. I was diagnosed on Apr. 11, 2013 at 55 years old. I began my first dose of what was supposed to be 6-8 rounds of dose dense Chemo on May 12, 2013. A few days after only one dose of Taxotere and Cytoxan, I was taken by ambulance with unbearable pain as if someone was taking a sledgehammer to my legs, spine, and arms. It also felt as if someone was pulling out my ribs in the front and back of my body with pliers. I ended up in the hospital with 105 degree fever, double pneumonia, hallucinating, in excruciating pain. I died twice and had to be resuscitated. I only remember the Hallucinations and the pain.
Within a week I lost every hair from my head to my toes AND all of my fingernails and toenails. Apparently, I was allergic to the Chemo and had been OD'd on meds in the hospital. The medical staff told everyone that I would not survive. I fooled them. I did recover within two weeks, but I am still experiencing terrible side effects from the one round of Chemo. My side effects from that ONE dose of Chemo are terrible and are keeping me from doing most of the things I love. I am completely alone and rarely get out of my house because of unbearable pain throughout my entire body. I am unable to drive. I cannot to walk for more than 10 minutes without excruciating pain. I have severe peripheral neuropathy and ridiculous Chemo Brain. My brother called it "Long Term Loss of My Short Term Memory". I used to be extremely active and social. I was a Fitness Trainer and Personal Chef. I was very involved in community theater as a dancer, actress, and singer. I love to walk, hike, weight train, entertain, camp, garden, etc. So far, all I can manage is a little gardening. The doctors don't know when or if the side effects from the chemo will subside. All of my friends and family say it's too disturbing to see me like this, so I am alone most of the time. The nurses in the hospital warned me that this is all too common. No more Chemo for me, so I had better stay Cancer free!
However, within 4 weeks of that one dose of Chemo, the tumor could no longer be felt. I had a lumpectomy on Aug. 12, 2013 and it took hours for them to find where the tumor had been. They finally found the wire marker that the original pathologist had placed near the tumor during my original biopsy. The tissue and the lymph node that the surgeon sent to the pathologist were clear with a 10 mm margin. So far, I am still cancer free and it has been over 2 years since diagnosis. I switch between a mammogram and a Breast MRI plus blood work every six months. I also, see my Oncologist every six months.
Good Luck!
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