Newly diagnosed, planning for treatment, any advice?
I was diagnosed two days ago - IDC Stage 1, Grade 2 - don't yet know the receptors. I am scheduled for a lumpectomy and SNB on Dec. 5. Surgeon doesn't feel a mastectomy is necessary yet, but because the lesion had spread to surrounding tissue seems to think radiation is in the cards. Not yet sure about chemo.
My question is for those who are in treatment, or who have gone through treatment (and I hope these questions aren't inappropriate or odd). What is it like? How does it affect you? Does it change your day-to-day routine?
I am in graduate school, and am employed by my University as a graduate assistant (helps pay my tuition, so I really don't want to give it up). I also work part-time for a child welfare agency. I love what I do, and want to continue doing as much as possible, but I wonder how treatments will affect my ability to work or attend class. Things will slow considerably in the summer, which will be very nice, but next fall I'll be starting an internship that will add 16 hours a week to my current schedule.
I know I don't know what's coming yet, treatment-wise, but I'm the kind of girl who likes to plan ahead as much as possible. Any thoughts or advice you can share will be so helpful. I think, too, maybe it'll take away some of the fears I have about what might be coming.
Thank you so much - I am so grateful for these forums!
Nancy
Comments
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Hi Nancy,
You really won't have a final diagnosis until you have surgery. Saying this, you will most likely be able to work, at least part time. I think you should be fine for next fall too. That is what I would plan on.
I am saying this, assuming that chemo is part of the deal.
If you do chemo, you won't have as much energy as normal, but you should be able to function. To the extent you can exercise, it will help too. You will need to manage energy to get everything done.
Good luck with everything. Hoping the sentinal node biopsy is clear.
I am so excited about your career. Congrats on that. Keep your focus there and on making it through treatment. This isn't going to be fun, but not the end of the world either. Then you can go on with your life and career.
Happy Thanksgiving...... - Claire
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Hi Nancy, I am four weeks out from my lumpectomy. I went back to work 1 1/2 weeks after surgery which helped a great deal. Having other people around you and working takes your mind off your BC. I had no node involvement and clear margins, so I will start rads in a week. I will say to be aware that your underarm will be tender. Mine still is. Also some numbness in breast area. There is still what I call a tugging sensation in upper arm area from the biospy--feels like stitches pulling. Having said all of this, be positive and visit here often. I can always find information here and a big group hug. Sending you one now. Gail
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NancyHB So sorry that you are going through this-I was diagnosed in late November last year and the early weeks are such as shock. I also found that it was really tough to absorb the impact of the diagnosis during the holidays. All the festivities, decorations, etc. made me feel really sad i.e. my whole world had just been turned upside down but everyone else was celebrating. It's such a roller coaster but it does get better.
As for what it's like to go through treatment and how it affects you I can only speak for myself-I'm 42 years old by the way. Different people respond in different ways to the treatment. Some people have fewer side effects than others. Keep in mind that you won't know everything until after you receive your surgical pathology because you need to know the hormone status (ER/PR) the Her2 status and whether there is lymph node involvement.
For me, I had a lumpectomy to remove a 1.2 cm tumor and was fortunate to have clean margins and no lymph node involvement. However, my BC was ER+/PR+/Her2+. In almost all cases, Her2+ = chemo because it's aggressive (even with no lymph node involvement). My core biopsy pathology showed the Her2+ status so I was already fairly certain I was going to require chemo before I even had the surgical pathology.
My lumpectomy/SNB was easy and I only took 3 days off from work and never took anything but Tylenol for pain. I would describe chemo as tough but manageable. I had a lot of side effects but still managed to work full time and took a few days off in the last 3 cycles due to a buildup of fatigue (I'm a full-time social worker in a busy hospital ER and on inpatient medicine). Radiation for me was extremely easy and I had no skin reaction until the last week. I'm also on an infusion called Herceptin (every 3 weeks for 1 year to target the Her2+) and I've had absolutely no problem with the Herceptin either. I recently started taking daily Tamoxifen (hormone blocking medication) which will continue for 5 years and I'm having minimal side effects. I've essentially had ongoing treatment ever since surgery: chemo, Rads x 33, and still receiving Herceptin infusions every 3 weeks x 1 year. With all of this treatment, I've had a lot of appointments but I've continued working full-time throughout.
Whatever treatment you require (Rads or Chemo + Rads) is not likely to start for 4-6 weeks after Lumpectomy/SNB because you need time to recover. Rads can take 6 or 6 1/2 weeks and chemo can be 12 weeks or 18 weeks depending on what type is prescribed. Worst case scenario: even if you require both chemo and radiation you should be done by mid-summer and would be feeling a lot better by Fall when you start your internship.
Wishing you the best results and the least amount of treatment necessary!
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I had a bilateral mastectomy with 10 nodes one side and 4 nodes on the other. 3 weeks later I was on a bus going to my appointments by myself. I was freelancing at my old job (got laid off 5 months before diagnosis) 3 or 4 weeks after too. I think the main issue after surgery is the narcotics. I didn't need/take any (not the norm) so my head was clear.
As far as Chemo. First of all you don't know yet if you need it. My gut says given what you have told us and your age (I assume under 40) that it is something that maybe be considered… but as others have said you won't know for sure till surgery. Having clear nodes will help. Even you staging can change because they really don't know the size of the tumor till they get in there. (Can be smaller or bigger).
The other thing about chemo is not everyone gets that flu like fatigue. I never did. After the 1st 3 treatments I was working out for 70 minutes in the gym the next day. After tx 4 I would get a bit more tired at the end of the day. I had 6 treatments but you may only have 4. It really depends on the biology of your tumor. (If you are HER2+, ER/PR+ or -). You might have to take a few days off here and there or you might have to take more. Everyone reacts differently. I know a gal who had the same chemo/herceptin as I did. She had almost no side effects except some taste changes at the end. She's 10 years younger than me.We both had no nausea but even if you do they have meds that will help with that.
I didn't have radiation but it too is cumulative. You probably will be more tired at the end. If you have a lumpectomy then you most likely will have radiation. If you have a mastectomy then it really depends. Some of us get it some of us don't.
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Wow - thank you all so much for your input!! You have taken so much fear out of my life, and I appreciate your time and energy (and positivity!!)
I am 48 and perimenopausal - hot flashes from time to time but still having regular periods. I was a full-time social worker (child welfare) until I was laid off two years ago, but that was a blessing because it allowed me to return to school full time and work on an advanced degree. As much as I love school, I also need to work because we need the income. My anxiety level increases worrying about not being able to work, and how that itself would affect treatment (yes, I know I have bigger fish to fry than paying my bills, but this is such a shift in life-thinking that I forget that sometimes).
I know I still have to learn more about what exactly I'm facing, but having more information is powerful to me, and I appreciate everything you have shared. I'd rather be prepared for chemo and radiation, than unprepared and surprised.
Thank you again!
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My mother-in-law was diagnosed with breast cancer in 2004 and fought it for 7 years until it finally won last month. She was very courageous during those years and of positive high spirits. During that difficult time for our family, my father-in-law, who is an experienced Pharmacist in Canada, developed the "over the counter" skin treatment called "Radia Kit" to help his wife. The cream/gel kit is formulated with all natural ingredients to restore skin damaged from radiation. The gel/cream kit is applied before and after radiation and the cream is sold separately for those who already completed radiation. It is patent pending in Canada and the USA (patent pending 2639525) and we have sold it mostly in Canada and Europe. Now it is available here in the USA to help minimize the side effects of skin damage from radiation. My mother-in-law was the first to try it years ago and it really helped her to live a better life, which made us a little happier. We hope others will discover it too. It is only available online at www.skin-safety.com. We don't want to only sell a product, but we want to hear from you. Please feel free to send us any questions you may have about improving damaged skin and we'll be glad to respond to your inquiries.
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Skin safety, you have posted this message on 5 different threads that I have seen. Sure sounds like you're selling something to me. Please read bco rules.
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Nancy, there is such a wide variation in people's treatments and their responses to treatments, but in general I think you will be able to work a few days after your lumpectomy. A month to six weeks later, you may begin radiation and you should be able to work through that as well, especially if your work is more sedentary (not sure about the child welfare work - does that involve a lot of physical activity?).There are people who develop infections after surgery or need re-excisions, but by and large, most people just take a few days off for a lumpectomy and are right back at it. As Iago said, how you respond to anesthetic and narcotics is a big part of the equation. I was lucky enough not to need general anesthesia, and the local + sedation didn't harm my appetite in the slightest. The SNB is what will take the longest to heal, probably. And as bgail said, it's good to be around other people who are going through life normally to remind you that life is not all about BC, even though right now it sure may feel like it!
As for radiation, again a LOT of variation in reactions with some people reporting fatigue and others not, but most of us who haven't gone through chemo not taking any time off work. Anecdotally, women who have chemo and radiation do seem to get a little more tired, but many continue working and going to school and raising their families. The skin side effects of radiation vary widely, too, with some women barely getting pink and tender and others developing burns and blisters. So you can see how some people might need a couple days off work whereas others are there every day.
What is weird about this whole BC thing is what Claire pointed out: right now you just have a preliminary diagnosis. You won't know the whole picture (and therefore what is your best treatment plan) until AFTER the surgery. This is really hard for control-freak and planner-type people like me to accept! I was like you, trying to figure it all out beforehand. You will feel such a sense of relief once you get your final path report, because at least then you can meet your DRs and set up a plan, once and for all.
Good luck!
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Natters, Thanks so much for sharing your story. I know that I don't yet know what I'm in for, but being the control-freak that I am, I need to know what's possible, rather than be surprised. I'm also at a critical point in many areas of my life, and having a "plan" for every possible scenario takes alot of the fear out of it for me. As a graduate assistant, luckily I do alot of sedentary work, or at least work that doesn't require me to be too physically active. As a child welfare worker I work with birth parents and foster children, and am pretty physically active in lots of different ways. Grad school is actually relaxing - lots of reading, writing papers and participating in lectures, and my professors have already given me lots of hugs and free passes to miss class if need be.
What's confusing to me is how my surgeon - who's apparently a very good breast cancer surgeon in our area - can give me a diagnosis when I haven't had the lumpectomy? I know that he removed a good portion of the lump during the biopsy - I had a local anesthetic that didn't work (my body doesn't accept locals well, apparently) and so he needed to finish faster than I think he wanted to. I am fully prepared for the lump to be larger than he has already said (about 1/2 an inch, Stage 1). I also understand that I don't know the extent of lymph node involvement. I guess all I really know at this point is that it won't be better, but it might be more involved. Maybe the surgeon has seen enough of these lesions to know it'll at least require radiation? I don't know. We meet with him on Friday and I plan to ask for a copy of the current path report. Monday is the SNB and lumpectomy, so we play the waiting game (yet again).
In the end, I'll know what I know, when I know it. But not a moment sooner.
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Nancy Radiation is the radiation oncologist call not your BS. My BS was almost certain I would have radiation based on the size of my tumor. When I talked to my Medical Onc she seemed to indicate maybe not but referred me to the radiation onc… I was in a gray area but I got a pass.
Also although my tumor was 6.5cm only 5.5cm was invasive. They base the treatment on the invasive part.
Finally my BS was pretty certain I would have micromets in my nodes. Statistically he made sense. An agressive tumor my size gave about an 80%. But I was one of the 20%. So you never know. The news can be better than expected too.
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Nancy HB, I am one day post op from a lumpectomy. I feel great, didn't do too well with the anesthesia, or maybe the pain meds. I was apparently c/o a lot of pain so they gave me more meds which ended up making me very nauseated. I still went home the same day but had to stay longer than expected. Also the doc removed more of the breast tissue than expected. Even so, today I feel great and am happily surprised to see my breast still looks like a breast. No caved in portion. The area fills up with blood and fluid and this morning when I bent over to put on my socks my breast started making all these sloshing sounds. Absolutely hilarious.!!!!
I will get all the details at my post op visit on Friday. I too was told that radiation will be on the books as I opted for a lumpectomy rather than the mastectomy. I will have to wait to see if chemo is also needed, they said possibly as I have a grade 2 stage 2 invasive. I had planned to take the week off work but may well go in tomorrow. I work part-time at a clinic.
One thing I would suggest is if you are going to have the radioactive tracer injected before your surgery ask the radiologist to add lidocaine to the mix. You can download a paper written by someone at Walter Reed hospital detailing how this helps with the pain of the injection. I showed it to my guy (on a military base, so it helped coming from a military person) and he was happy to add it and I felt nothing. He said I was either a very tough lady or it worked a treat. I can assure you I don't do pain well...:)
http://www.breastcancer.org/treatment/surgery/new_research/20090806.jsp I think this is the link
good luck with surgery
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As far as the SNB I had lidocaine injected first before they put the tracer in. Never felt the tracer and actually after the first shot of lidocaine (bee sting) I never felt a thing.
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Thanks for the info on the lidocaine and tracer for the SNB. I learned during the biopsy that my body actually does not respond to local anethestics, so I tend to "feel" everything. Am hoping he gives me some choices tomorrow for what we can do to prevent that happening on Monday.
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The ladies here have given you excellent advice.
I just wanted to mention whether you have talked to your surgeon about the possibility of having brachytherapy - internal radiation rather than external whole breast radiation. Women with early stage breast cancer are good candidates for this. This is the radiation that takes place twice a day for 5 days instead of 6-7 weeks.
The device is inserted in the lumpectomy cavity at the time of surgery or shortly thereafter. If this is done you are finished with radiation in 5 days instead of 6 weeks, which might fit in better with your schedule.
Speak to your surgeon and check out this website for a thread about brachytherapy or internal radiation or it is sometimes called Mammosite (the name of the device used). The other devices used are the Contura and the SAVI. You can google the name of the device to get more information so you'll know what to ask your surgeon.
Judy
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NancyHB - just in case nobody pointed out - lumpectomy is virtually always followed by radiation of some kind. Radiation is more a case by case situation if you have a mastectomy. I was a lumpectomy candidate who chose mastectomy, but my surgeon was definitely setting me up for the SAVI 5-day radiation if I had chosen lumpectomy. Good luck and keep asking questions as they occur to you!
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If you are ER/PR + w/o lymph node involvement, ask your doctor about the Oncotype Testing done on the breast cancer tissue. Google Oncotype Diagnostic Test (in case you haven't heard of this). Your surgeon should have mentioned this to you though. It is very often a test given to ER/PR+, Stage 1 or 2, lymph node negative patient's. Mine came back at 25, intermediate range. Because of my age (42) and the size of my two tumors about 4 cm, my MO wanted to be as aggressive as possible; therefore, I am on 6 cycles of Taxotere and Cytoxan, which is pretty tolerable. I have done well, although it is harder to bounce back with each treatment. I do not work outside the home, but I think sometimes when I am busy running my kids everywhere, I actually don't notice the fatigue and general achiness as much as when I'm at home lying in bed. Obviously, everyone is different. I have exercised throughout my treatment, except for this last treatment #3.......going for #4 tomorrow. Good luck to ya!!
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I would read this article if you plan on making decisions bases on the Onco Test...i would make sure you are given the FISH test as well. There are only two FDA Tests that approve testing for HER2.
. http://old.news.yahoo.com/s/hsn/20111105/hl_hsn/commonbreastcancergenetestmaybeflawedstudysays
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Thanks for your comments. We met with the surgeon today and he told us that I'm ER/PR +. The HER2 test came back "equivocal" so they ran a FISH, and the tumor is HER2 negative. He wanted to know that HER2 test before Monday because, had it been positive, he would have put the port in after the lumpectomy. So now, being ER/PR +, he says I won't likely need chemo unless there is node involvement.
He mentioned the Octotype testing, but I think he said the oncologist would be doing that. I know that's another indicator of the need for chemo, but I also realize that takes a couple of weeks to get results back and so, yet again, here we go with the waiting game.
I'm going to do more research - I want to be as aggressive with this as I need to be, to lessen the likelihood of recurrence.
Nancy
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Nancy. I am ER/PR + Her2 - and was also told I likely will not need chemo unless there is significnt node involvement. My SNB was monday, so I will not know for sure until my f/u visit on 12/6. Surgeon said it looked clear at the time of surgery, but only the path report can confirm.
I chose to have bilateral mastectomy to lessen chance of recurrence and having to go through this all again.
I have no Stage until the pathology reports from the surgery.
Good luck to you.
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Sorry - read back upwards and saw all of the responses. You are all so wonderful!
lago - My surgeon has requested that I not have lidocaine when they do the SNB injection. He says they've discovered that the lidocaine inhibits the absorption of the radioactive material, and so I will not be having any numbing ahead of time.
judyfams - I've never heard of brachytherapy - I will certainly get more information and present the idea to him on Monday!
SpecialK - My surgeon gave me the option of lumpectomy and mastectomy and the outcomes of both, and I chose the lumpectomy. He did say I would require radiation afterwards, and may require chemo, depending on the outcome of the SNB. It's nice to feel like I have options, and I'm actually involved in my treatment plan!
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NancyHB - sounds like we're almost at the same point. This has been a very helpful thread!
I'm having my lumpectomy on 12/9 and SNB. I was told my the nurse today at my preop testing appt that I was going to have a wire localization. Anyone know why I would need that? My surgeon put a titanium chip in my breast at the time of biopsy.
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CharB22 The wire localization involves the placement of very fine wires on the day of surgery guided by mammogram so that the wires are directed to the site of the clip. In my understanding, it then serves as a guide for the surgeon to go directly to the site during surgery if that makes sense. That's also part of the reason it's such a long day at the hospital. You have to have the wire localization (one procedure) and the radioactive dye injection to locate the sentinal node (another procedure) before you go in for surgery.
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nancyhb
I saw your response to the lidocaine addition to the tracer. I think that is a radiologists choice/belief as mine said' "oh, I had wondered about adding to the tracer" and then read the article I gave him. Of course, with the study having been done at an Army hospital, and me being seen on base, may have made some difference to the acceptance level, but I am glad he added it. It was the main thing I was dreading, and I felt no pain whatsoever. It also did not in any way distract from the nodes, they lit up like Christmas lights
Good luck with your proceedure, hope all goes well for you with good results all round. The fun part post lumpectomy is trying to scratch an itch on numb skin
not very satisfying, but the numbness is wearing off, just a little still around the nipple area.My results were all good, so am on a more positive note to see my oncologist tomorrow.
hugs to all
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I had the lydercaine shots first then the tracer shots were added. I wonder if that makes a difference. I was treated at a major teaching hospital.
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