Need Chemo and really scared!
I was diagnosed with IDC in April and had a lumpectomy and 4 lymph nodes removed. It is stage 1 and my surgeon told me I ould need radiation and hormone therapy. I am ready for that.
But when I went to the oncologist he sent the tumor off for an Oncotype test and it came back high and he is telling me I need agressive chemo. I got another opinion and liked that dr better but he had the same recommentation.
HELP - I am so scared of everything - losing my hair, getting the port put in, etc. And I am having a very difficult time with the numbers and %s they are giving me. Is this really worth it!
Thanks for any words of advice, etc.
Comments
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Yes it is worth it, I know it will a difficult journey, but if I can to it so can you.
As to your treatment I would do some research and then make the decision that you are the most comfortable. Chemo does make you sick but you can get through it if you need to do that.
I had IDC but my was Infammatory so I can't really give you specific advice on treatment.
Sending love & prayers, NJ
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Hang in there.
I too am scared to death.
I had a lumpectomy 1 week ago with one positive node. I meet with onc and radiologist next week. It's going to be chemo and rads.
I am scared, overwhelmed and have all the fears you have. Loosing my hair, feeling sick.
However, it is worth it. I am married with two children. The beast terrifies me but not seeing my kids grow terrifies me more.
Are you married, any children? Where do you live and are there resources near by?
I go to my first cancer support group next week. Are there any groups near you to find fellow survivors.
I also contacted the look good feel good organization.
IT IS WORTH IT!
Stay strong and know I am sending huge hugs your way xxxxxx
Jules
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I too am Stage 1 and was told that I will not need chemo and my oncotype score for sure will be low. Four days later they called with the results, low intermediate. So now the oncologist told me it is my decision. After a sleepless week and a second opinion (also no recommendation but more information), I decided to do chemo. Am doing the TC treatment, four times every three weeks. Have one more treatment left next week Friday. Side effects so far have been very manageable. Loss of hair is very emotional but once it is gone you just deal with it and look forward to getting this over with. Let me know if I can help answer any questions.
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I had a lumpectomy in April and was told by my BS that most likely I would only have to do radiation. Well after being refered to my oncologist I found out that it would be best to do a BMX due to strong family history of BC and chemo as well, followed by a year of herceptin. My surgery is June 17th and I will begin chemo shortly after. I was terribly frightened to to find out things weren't as simple as I first thought but after an overwhelming amount of family support I have decided to do what is best to save my life and to be here for my husband and two wonderful daughters. I strongly believe it is very well worth what I have to endure to live. I am only 32 years old. I have more living to do.
More prayers and hugs coming your way.
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I just finished radiation three days ago, so am on the other end. Yes, it is worth it. Their real concern is that the cancer cells may be elsewhere in your body, and chemo is how you zap them. Your surgeon's job is to remove the tumor, but your oncologist is the person who guides the remainder of your treatment.
I won't say that chemo is fun, but you do get through. They give you meds to make you more comfortable. The other thing that will help is if you get some exercise every day. I am a cyclist, and I cycled weekends throughout. I felt tons better when I did. And I did weights and crunches every day plus walked at least one mile. I am not suggesting you do this amount of activity, but some activity will make a major difference.
The picture was taken during chemo BTW.
I was philosophical about losing my hair. I got some wigs so cool that someone in my building recently chatted me up about my great hair! (It has red streaks.) I plan to get some add-in red streaks once I have enough on my head to make it worth it! I never would have gone there if I hadn't been forced to rethink everything.
One benefit of all this is that I will end up with much cooler hair and makeup than before, and I really did need to update my look anyway.
Early on, one of my male friends made a comment that put the whole hair thing in perspective....unlike his, mine will grow back!!! I don't think that I am quite ready to break the news to him that this is already true!!!
Good luck. I know it is hard to prepare yourself for this journey. But all of us get there. You will too.
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You're in the right place for support and sharing. We know what you're going through! Yes, it is scary, but the anticipation is, most of the time, the worst part. After the first chemo, my fears subsided, although I was anxious before almost every chemo anyway!
I had IDC and it would have been stage 1 but it was a bit too large. I had a choice of surgery first, then chemo, or chemo, then surgery (prognosis the same either way). I was in too much shock to feel like I could deal with surgery and recovery from that so I had chemo first -- adriamycin/cytoxin, dose dense, 4x, and then Taxol for 12 doses. By the time they got done all the tests showed every detectable trace of cancer was gone. I still had a lumpectomy and then radiation, but even the lumpectomy (and the 17 nodes!) were completely clear, so for me it was more than worth it.
For me losing my hair wasn't the worst thing -- it was emotional, for sure, but I took control, cut it short before I started chemo, and then shaved it when it started falling out so I wouldn't have to deal with handfuls of hair every day. I also went completely bald because it was summer and too hot even for a light scarf. It's a bit humbling, in a way, but also very empowering, and I knew it would grow back.
I was also a nervous wreck having the port put in but I told my nurses how nervous I was and everyone was great, and the actual procedure was a piece of cake (after all my anxiety). It was worth having in -- way better than having my veins destroyed by constant sticks.
You'll find some good threads on how to prepare for chemo (my biggest advice: drink LOTS of water every day, and keep your dr. informed about anything you have concerns about, no matter what -- as the nurses always told me, I didn't know what was normal and to be expected, so I should treat everything that bothered me as a concern). There are tons of good meds to deal with SE's. I was most afraid of vomiting but only had mild nausea off and on and was able to quickly control that with ginger ale or meds. Fatigue will most likely be your biggest complaint. Don't be surprised if depression hits (and if it does, talk to your dr. about it). My oncologist has a therapist on staff and I used her a LOT, and also ended up taking antidepressants when I realized how low I was sinking. Very common. Sucks, but very common!
Go with the oncologist you like and trust the most; the support staff is really critical, too, because you'll be dealing with them as much or more than the oncologist. I was lucky to have a terrific, kind, compassionate oncologist with staff that is every bit the same.
Keep us posted on how you're doing. Ask ANYthing. Rant, cry, scream with us. I think almost everyone would be glad to answer a PM so go that route if you prefer. Take a deep breath and remember: you'll get through this. Even on the days it feels like you can't or won't, remember how many of us have gone that path ahead of you and are holding out our hands to help. Warm hug.
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I know you're scared, I'm sure this is the last thing you thought you'd ever be facing. I was 42 when I was diagnosed and had no history of any type of cancer in my family - I was shocked to find out I had cancer and didn't understand anything they were telling. These doctors have years and years learning this stuff and then we have to learn it in days..................However, with the help of many friends, a good group at the Breast Cancer Center, this site and a few others I've learned a lot.
Is it worth it? Yes..... it is worth it for you, your family and your friends. While chemo and radiation are not fun, it is doable. There are plenty of medications to help with SE's. And....it seems that staying active really helps physically and mentally. I wasn't as active as some of the women on these boards, but I did try to walk almost everyday, took care of my gardens, ran errands when I was feeling good, cleaned house and cooked. I also was able to attend functions at my daughter's school and hosted Sunday football parties throughout the football season. I did stay home from work for six months (at times worked from home) - the SE's made it hard to work and at times were unpredictable. However, there are plenty of women that do work.
As for the hair, at first it seems to be such a big thing, but then you do come to terms with it and realize, it will grow back and in the scheme of things it's not so bad. I choose not to wear wigs, I wore bandanas or "dressy" scarves when I went out. Around the house I didn't wear anything. One thing that made me feel in control was to have it cut really short before chemo (Jamie Lee Curtis short). Then when it started to fall out I had my best friend of 37 years shave my head. It gave me some sense of control.
(((HUGS)))) You will get through this.
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These ladies have given you good advice. It is natural to feel overwhelmed. All of us did. My only advice other than what you have heard here is to deal with things one step at a time, let your friends and family help and allow yourself the latitude to have whatever feeling you are having. It is perfectly fine to be scared, angry, concerned, worried, confused.....lots of emotions involved with a diagnosis. Hang in there and come here often. Ladies here have been through it all and can help you along the way.
Tracy
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Sorry you are having to deal with facing chemo but as others have said it is worth it. I too was petrified about chemo but I have now had 4 treatments, FAC every third Monday, and my side effects have been manageable. They give you great drugs to fight the nausea and other than being extremely tired on the 3rd and 4th day after treatment I have made it through really well.
I was also proactive with the hair loss and shaved it off right after my first treatment to avoid the horror of watching it fall out. I have several great wigs and when I look at pictures of myself with my old hair I can't believe how much better I now look with my wigs. They are a little warm in the summer but I haven't been brave enough to venture outside bald. I honestly think I may continue wearing the wigs even after my own hair comes back since they are so easy to throw on in the morning and be ready to go.
Getting the port put in wasn't a big deal for me but I will admit that I can't wait until it comes out. It is pretty visible so I have to be careful what kind of shirts I wear and I am avoiding swimming, hot tubs, etc. because of risk of infection so will be happy to take it out.
Nature girl pretty much covered everything else I was going to say so do check out the chemotherapy/before/during/after thread. There are lots of great tips on getting through chemo.
Feel free to PM me if you have any question and do keep us informed.
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Thank you all for your advice and reassurance. I just called the oncologist office to schedule everything.
The treatment will be dose dense AC for 4 treatments followed by 4 T(taxil) treatments each every 2 weeks. I am assuming that it will be difficult to work thru this. I have a high pressure, stressful job and have to drive 50 min to an hour to get there.
I live in NJ near Princeton and will try to find a support group as well.
Again thank you all. I will keep you posted on my progress.
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Hi again,
Glad you have scheduled everything. Dose dense also means you will be done sooner than once every three weeks. Being Grade 3 and having a positive lymph node are why you are going down this path. (In addition to the Oncotype score.)
I had had SIX DD of each and I came through just fine. You will too. - Claire
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p.s. Wigs aren't always that bad. I got chatted up the other day wearing the black w/red streaks. Am about 2-3 weeks away from sporting my new ultra-short "do".
I am wondering if you can work PT from home. Depending on what you do, it might be possible for you to work remotely. I did work, but was able to fit my consulting around treatments. And I didn't have a NJ commute.
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Yes, it's worth it. You want to know that you've done everything possible to eradicate BC.
I'm 2 years out from dx was scared stiff when told I would need chemo. Whilst it's not pleasant, as everyone says it is doable and you will get through this. I also worked through chemo just having two days off each cycle.I may not have felt at my best but it was important to me to keep a sense of normality. It stopped me thinking of BC 24/7.
When you've just been told you need chemo it seems a very long road, but it will soon be over.
The hair loss didn't really bother me. I had a brilliant wig. People asked me where I got the streaks done. And soon I was complaining about my hair being too thick.
Over 18 months since my last chemo and I don't have any lasting s/e. My hair is finally coming thro' straight and life is good.
You will come thro' this. Just batten down the hatches and mark the dates off on the calendar.
God bless
Mal x
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Hi!
I'm having a port placed this coming Tuesday, and will be starting chemo the following week. Like you, my surgeon had told me I had a early stage cancer and to expect radiation following lumpectomy, and I felt prepared for that. That all changed when the breast center nurse got me a copy of my pathology report, and I found out I had triple negative breast cancer and what that meant.
Frankly, I sort of lost it for a bit and was having a hard time functioning and sleeping. I asked my doctor for help, and she prescribed a anti-depressant and a sleep aid. I've been taking the anti-depressant 2 weeks now and while I can't tell you if it's the meds or the placebo effect, I have been feeling much calmer about everything. I am not usually a advocate for better living through chemistry, but a breast cancer diagnoses qualifies as a crisis in my mind. Don't be afraid to discuss your emotional state with your doctor if you think a anti-depressant might help you too.
Reading the "Get Me Through Treatment" and "Chemo" forums has also been very helpful. There is so much knowledge freely shared here and it is comforting to realize how many women have walked the road before me. If they could do it, so can we!
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All the ladies in WA on this thread. Where did you go to get your wigs?
Meeting onc in week and will start chemo. Want to be prepared before I lose it all.
Thanks
Jules
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Swanseagirl-there is a thread called Crazy, Sexy Cancer in Seattle here that might help you out. I can tell you a couple of places, but ask the ladies there too. Fresh Hair is one. Anton's in Bellevue is another. Chris's Hair systems in Capital Hill.
Millerstepha-The working thing is very individual. I too had a high stress job with a big commute and I worked throughout my chemo and radiation. I had chemo on Wednesdays, took Wednesday, Thursday and Friday off or worked from home those days, usually worked from home on Monday and went back to work by Tuesday. Wait to see how your body reacts before you make any decisions. Also, for me, I needed to keep working so I didn't sit at home and fret about my diagnosis all day.
As far as the actual side effects, everyone is different but there are really fabulous drugs for nausea and pain and many people, maybe even most people don't have any nausea. Like Claire said, be as active as you can, stay hydrated (no really, stay hydrated!!) and take the drugs if you need them. It is not the most fun you have had in your life but it is definitely doable!
Glad you have some concrete plans.
Tracy
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You can do this! I was diagnosed in 2006 right as I was turning 40, and my husband had a recurrence of brain cancer. My head was spinning, so the only thing I could do was concentrate on getting through one day at a time. It worked for me. If you have two oncologists telling you to get chemo, do it. You'll get through it, and you won't regret it.
Peace!
Bobbie
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Jules....
I couldn't do the "cranial prosthesis" route, so went to Vain on 1st Avenue here in Seattle. Got two in the same style, one a black bob. The other is also black, but has red streaks. $27 each.
Very mod looking and fun. I will probably go to that hairstyle when the current fuzz gets to that length.
I took this as a period to "road test" new looks. Also makeup. Good luck. - Claire
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I know you are scared and that is only natural I was diagnosed in June last year and just thuoght they would removen the lump which they did but also removed 17 lymph nodes one of which the cancer had spread too - started chemo in september and was shit scared but just felt that i would do anythiing they asked if it helped and i had radiotherapy for a month in feb of this year !
My hair has started to come back now but the main thing is i am so very grateful to be here still and had fantastic support from this site and family and friends. Sometimes I think it has been a bad dream but unfortunately it was not but on the positive side there is light at the end of the tunnel so just do what they say! Life is so very precious and beautiful it took cancer to make me realise that in it's full entirety
Debbie
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millerstepha,
what to add to the wealth of experience and wonderful advice? I also found myself facing things I never thought I would or could do. The hair was so hard to lose, and frankly, I was....just fine AFTER losing it. Who new? ( I cried, screamed, called my friends...you name it
I think having a hair buddy is a great way to go...friends who are at the ready for when it does start coming out...and have a good pair of clippers on hand, not like the cheap ones I bought that failed me twice just when I got me nerve to do it! (I walked a mile, bought the shears, came home put them to my head, and ..nothing..) then I reapeated this again with a replacement pair that turned on, but the blades didn't move..so I grabbed scissors and took it off that way.)
I still have my sexy port....and I waer it proudly next to my swim suit strap. I am keeping it until I get my implants in 6 months or so..I really don't think about it too much.
I too had to take six months off of work because I am super sensitive, but I had meds for pain and nausea that worked. Be sure to use them if you need them (under your MD's supervision of course)
and I joined an in treatment support group. We are a mix of cancers, but we all share chemo and some radiation in common. I needed to be with others who understand chemo. I am growing quite attatched to my support group buddies!
I do scan to see how people are doing, and you might be suprised at the silent cheer team you will have on this site even beyond the people who reply. You will be thought of, prayed for and encouraged throughout your whole journey.
And as the ladies told me...You Can Do This! You can...., you will make it past things you never thought you could...
hang in there...you are not alone
traci
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