Women under 45 stage II w/node involvement?
Comments
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I was 44, had lumpectomy, chemo and rads. Over a year later, decided on a prophy mastectomy due to dense breasts. So far so good. On Arimidex (stopped having periods as soon as chemo started). Had prophy hysterectomy, too.
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Taylor777,
I'm glad you found this site, too. The waiting was hard for me, too, especially in the weeks after my diagnosis and the additional testing prior to treatment. I hope you have the info you need soon so that you can gather your energy and release some of the stress. Hang in there! Although the journey this past year has been difficult for my whole family (we have three kids, ages 4, 8 and 10), their love and support have meant the world to me and have helped bring me through this. When you're ready to tell the kids, they'll be there for you. Best wishes to you.
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Profbee, Thanks for posting - the info is helpful
Best wishes with your treatment.
Stephanie1, Thanks, too, for posting. We sound quite similar in our diagnosis and neuropathy issues. During and after chemo I've dropped lots of dishes and have taken some big falls (down stairs a few times, too, like you). I'm glad to hear yours is getting better, too. Although the improvement seems to be a little slow going, I'm hopeful it will keep moving in that direction.
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Dear kris1
I've had trouble with range of motion, right arm nerve issues and chest/axillary area muscle contractures after the lymph node dissection and bilateral mastectomy (done in July and August 2010). My reconstructive surgeon referred me for physical therapy in May, and it's been really helpful in gaining range of motion and strength. I still have the tissue expanders in (Lord, I can't wait to get rid of those) and will be heading in to surgery to switch those out the end of August. If you're having trouble, it's worth asking about PT. I'm glad I did.
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As for staging, it's kind of funny, I asked my surgeon and he said 1C. Of course there is no 1C...but he was not sure if my node would be a micromet or not.
I actually believed him for a few days!
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Taylor,
We were the same age at diagnosis, and have kids @ the same age.
Hang in there. This site is a great resource. My only advice is start researching each step before you come to it, read everything you can because you have so many decisions coming up.
And here is something I did wrong that you may want to avoid. All my decisions were based on the current research (good) but in the back of my mind ...well, I believed none of it mattered, I had cancer, I was dying.
After reflection, I see that I almost turned down radiation (even though the research showed a significant benefit to me) because I believed I was dead anyway. It's not an idea I cultivated or even realized I held as true until I finished rads and realized....I'm still here. I'm alive.
And I was shocked.
Other posters often say "breast cancer is not a death sentence."
I didn't believe them.
Here is what I wish someone would have said to me (if I'd known then I needed it).
Breast cancer sucks. You're going to spend the next year or so actively fighting every single day to maintain your life (research and focus on that battle). But then the daily battles end and you'll have to find something else (LIFE!) to fill the time it ate. It's hard and no fun, but you'll get to the other side and continue on with your life. When you lay in bed at night and think about dying, about leaving your kids without their mom, know the odds are against it.
That may not help you....we're all so different....if you need anything, just ask....lots of helpful, smart women on this board!
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Thank God for you guys!!! From what I've been reading you all are such strong beautiful people!!! Its been 16 days since my lumpectomy. I have been calling my surgeons office daily to see if my results are in and still not in!! The ladies in the office are very understanding they called the pathologist and he said its going to be another day or so!! Well I lost my mind and said I have cancer and not strept throat and its been 16 days and I have been losing my mind since this whole process began!!!! I havent slept, I havent really told anyone and my kids dont know.. I am so scared to tell my 8yr old and 11yr old, Its not fair to them that there mom has cancer!!!!!!!! I called the pathologist's office and she said it takes time and she wasnt very nice about it.I made a big stink about it and that if I had connections in the medical system that I would have already received the results by now. She put me on hold and the pathologist came on the phone with my file, all because I made a big stink about it and be rude about it!! Sorry just needed to vent..i feel so out of control!! So this is what he told me so far if you guys cane HELP ME with this... The tumor in my left breast is IDC, 2cm, stage 2, its not clear margins so he said either radiation or the surgeon has to go back in and remove it and they took out 2 nodes out and 1 is good and 0ne is bad..I asked if the cancer has spread and he said that they'll have to do other tests like bone density etc...I thought they could tell by the nodes if it spread. I have no clue about any of this I just want to live!!! if you guys could explain any of this that would be great and eventually I'm going to have to tell my kids that I have C and how do I go about this?? I've had 2 friends that have died of Cancer.. all I keep thinking about is that I'm going to die...I do not want one more dr. to tell me that "CANCER IS NOT A DEATH SENTENCE"!!!!!!!!! I'm 41 and this should not be happening to me or anyone!!!!!! I am so sorry for venting....
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Taylor,
Take a deep breath and know we've all been in your shoes at some point--not having all the info is infuriating. Try and focus on what you do know and what you can do with that information rather than the unknown. No one can make you any promises, but try and stay positive (I really hate those words, but they are true!) and believe your doctors. Stage II is still early and like me you will get through this! (I start chemo tomorrow.)
As far as your kiddos go, they will be fine. Be honest and open but don't make any promises. The ACS has a great book on Families and Cancer. The shortened version is on their website: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithDiagnosis/
My 11 (at the time of dx he was 10) year old has been reluctant to discuss anything, but he has been on 7 Komen walks so he knows what BC is and that his aunty is a 20+ year survivor. My 6 yr old has been the talkative one--she flat asked if I was going to die, to which I replied that "It isn't on my list of things to do, but it could happen one day. I'm going to do my best to make sure it doesn't happen until you are a grownup though."
I challenge you to repeat after me (without laughing) "Breathing in I calm my body, breathing out I smile." there, did I make you at least smile a little? I really can't even think it without a little smile.
Take care of yourself.
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Thank you mavinbook and yes you did make me smile
. I'm going to check out that website..Thanks again..Good luck with chemo..sending you a hug!!!
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Taylor777 - I understand how frustrating it is to not have your path report. I had my lumpectomy in late January, a Thursday. That weekend, there was a HUGE blizzard. Remember that one that shut everything down in early February? Yeah, it shut EVERYTHING down. Including the surgeons office and the labs that were processing my path report.
Hang in there. What everyone says on BCO about the waiting being the hardest part? They're right! I didn't believe it in the beginning, but it's true. Waiting and not knowing is HARD.
FWIW, I'm Stage IIa and it appears that you are as well. My onc. recommended no additional testing. I had no bone scans, no PET scans and the only CT that I had was the one right before I started rads. It's a bit unnerving, but I've made peace with it. So if your onc doesn't recommend additional testing, don't be surprised. Some do, some don't.
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Taylor,
Ok. You didn't have clear margins on your lumpectomy. There are exceptions to everything I will write here, but usually that means they will want to go in for another surgery to try and get "clear" margins, or you can opt for a mastectomy (MX) with or without reconstruction.
What you want to find out from your path report is if you are HER2+ and how big the cancer was in the positive lymph. If you are HER2+, then likely you will be having chemo and radiation. (Radiation goes hand in hand with lumpectomy to get the same survival/recurrence rates as a MX). What a positive lymph may mean is you will not just get rads to the chest wall (the boob) but also under your arm (axilla) and the clavicle area.
Once you have a path report in hand, you will be able to learn so much more about what you have and your options.
Cancer can spread three ways. Through the lymphatic system (which is why they check lymphs), through tissue and through the blood. Right now there aren't any reliable blood tests that can tell if the cancer's spread that way. Some Oncs give a PET scan, but the cancer has to not only spread but be a certain size for a PET to pick it up.
I'm stage 3 and my Onc refuses to do any type of scan. Says there is no reason unless I have symptoms. I think that is kinda the mentality of most Oncs from what I've read here. Don't stress about it at this point....it's something you can work out with your Onc later. Or you may have an Onc who wants a PET scan first thing.
Once you know your hormone status..and HER2 status, you can start looking at treatments for your specific cancer.
As far as telling your kids. You might want to wait until you know all about your specific condition and treatment. Research will also give you some time to get a little "control" when talking about it.
My 7 year old was ok once I reassured him he would be taken care of if anything happened to me...and that he could ask any question any time. And boy some of those questions!!
My teenager took it harder, but he's dealt with it. I took him on a drive and told him. I didn't make it "serious" and weigh it down with my fear. We went out for ice cream and I drove the long way and basically said,
"H. I have breast cancer. I'm stage 3 and most women who have what I have live (fill in the blank) years. I don't plan on dying anytime soon, but it could happen. I'm going to be taking chemo and radiation after surgery. You're going to have to help me with your brother more. But other than not feeling well sometime, I don't expect things will change much. You can ask me any question any time....it's just one of those things that happen in life, but we'll get through it."
He tells me now that he didn't freak out because I didn't freak out. He knew it was serious because he researched it, but I seemed ok with it, so he was too."
Of course I wasn't "ok with it." But he need never know that.
My kids are ok. Your kids likely will be too.
Hugs to you.
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Thanks for the smile, Mavinbook
Great answer to your daughter - sounds very similar to what I told mine. Dying isn't on my to do list, either!
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Hello...I am 43 years old. I have had 3 biopsies, a skin-sparing left breast mastectomy, a tissue expander inserted underneath the chest muscle (in case I needed radiation), and a sentinel node biopsy that was checked for cancer during surgery. Since no cancer cells were seen in the lymph node at the time of the surgery, I did not have a full lymph node dissection immediately. So far good news! I felt great, but the lymph nodes removed were examined again in greater detail over the next several days and cancer was found in 1 lymph node. I feel betrayed! I had to have another surgery to have a full axillary lymph node dissection 15 days later!
My recovery from both surgeries was as good as I expected. It's funny to hear the nurses say "you are so healthy". Nevertheless, one month later, my upper left arm and axilla are still numb, and since I could not do any exercise until all the drains were removed, I still do not have the full use of my arm.
Now the port has been placed and I am ready to start AC this Tuesday 7/19 every two weeks, 4 doses followed by Taxol every week for 8 weeks - then radiation. So far my journey has been full of "surprises", but I am still smiling!
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Hi everyone,
I don't hang around here much now but thought I would post my story and say hi. I work full-time in a demanding job in the corporate world with lot's of travel involved and have 3 kids 10, 11 and 13 so life is very busy.
I was 39 when dx in Feb 09, very fit healthy and no risk factors for BC, found a lump myself. I had a lumpectomy and Axillary node clearance, path came back ER, PR pos (weak) Her2 pos and 2/10 nodes pos. I did ACTH and Rads.
Chemo sent me into menopause, so started Arimidex, stopped Arimidex after 1 yr due to osteoporosis, commenced Zometa 6 monthly to increase my bone density.
After 2 1/2 yrs in menopause my period has recently returned........waiting to hear from my Onc to see whether I will start Tamox as I'm not currently taking any hormone treatment.
Life is great, I celebrated the finish of Herceptin with a family ski holiday and this year I took my 13 yr old daughter to Europe for a mother daughter trip, she had trouble keeping up with me, we did a lot of walking.
It took about a year post treatment before I felt good again and the SE's such as sore feet and aching joints took about 18 moths to resolve, I don't have any aches or pains now like I did during Chemo, feel as good as I did when I was dx. My hair is growing straight again after initially being very curly is now long enough for a small pony tail and while I think about BC daily I'm not obsessed by it like I was when I was going through treatment. I really don't worry about recurrence anymore........why worry about something that may never happen.
Louxxx
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Lou - thanks for checking in. I wanna be like you!
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30 @ Dx
Children at DX : 3 year old and 10 mth old.
2 + nodes (ER/PR+, HER-)
2 TAC - 1 - AC 2- Taxol (changed TX due to hosp )
current TX - Tamox and lots of supplements
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Thanks so much ladies!!! I didnt sleep very well so I came on here and I feel better reading your stories.
Such great news Loulou!! I love how you have gone on with your life and havent worried about recurrence. I'm just feeling bad thinking that my life is over and will never be the same but maybe it will and that it will be better and wont stress out about the stupid things that doesnt matter one bit now.
Thanks so much Ton Lee. I automatically thought that if your lymph nodes were affected you had to have chemo , Hopefully I find out more today. I'm going to wait to tell the kids until I know more and have calmed down.
Thanks Pejkug
Hi Seasiren and I'm glad your still smiling Ralston
Hi formycyndi, how are you doing now??
I am so grateful I found this site!! Thanks everyone!! I wish I could give you all a hug!!!!!
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Hi Taylor,
I just read your post from a few days ago, it's a scary time when your first dx, but once you get your results and treatment plan it gets easier.
I was honest with my kids and they coped fine, my daughter 11 at the time didn't want to know about it, but my middle boy asked lots of questions and needed reassurance that once treatment was over I would be fine, they weren't impressed having a Mom with no hair and made me wear a wig if there friends came and I wasn't allowed to speak about BC to their friends mothers.........at least when they were within ear shot.
I didn't mention in my post that I had 2 tumours 2.1cm and 1.5 cm IDC and the subcutaneous margin from my lumpectomy wasn''t clear, my BS thought Rads would be enough rather than a mastectomy, so far so good.
Hugs to you as well,
Lou.
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Taylor, I'm 41 with 2 small kids. It sucks. But, honestly the kids keep me going, distracted, focused, etc. But, I thought I would lose my mind and cried every night for several weeks at the thought of them growing up without their Mom. I know what you are going through. My littlest (4) is too young to understand much beyond the words sick, doctors, "owwie," etc. But, my oldest (6 1/2) asked LOTS more questions, thought the wig was funny and can comprehend the books I've found to try to help them. Still, most days everything seems normal to them. Luckily, they have short attention spans! LOL
16 days for pathology results after your surgery is a bit too long, in my opinion. It's sad that we sometimes have to make a stink to get what we need. Sadly, I have observed this over and ove
r in the cancer-treatment world. You MUST be your own advocate. The only other advice I can give is if you want a treatment, diagnostic test or whatever, fight for it. I insisted (and got) a MRI,
PET/CT, BRCA testing and several biopsies so I knew exactly what I was dealing with from the
beginning. Maybe, some don't care as much about this but I did. I had to know and I wasn't going
to let anyone tell me it wasn't necessary or important or we could do it "later." You might also
consider a 2nd opinion on your pathology report and/or treatment recommendations.
It sounds like your cancer is early stage. One of 2 nodes positive is very treatable. If you need
a re excision or even, a mastectomy, you will get through this. Then, you will feel much better when
you see the Oncologist and the treatment plan is in place.
The waiting is the absolute worst. Big hug. -
Another sleepless night...maybe today will be better I go see the dr. today.
Yesterday was a bad day all I did was watch t.v. and cried when my kids werent home. I feel like I'm going crazy!! I feel pain in different parts of my body and I'm stressing that it spread. I know I have to calm down and be strong but how do I do this?? Maybe I'll ask the dr. for some meds to calm me down.
Thank you LouLou and Patriotic your words mean so much to me!!!! You two have calmed me down
Today is going to be a good day
Hugs to you both
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This is a common problem faced by women during the laater satege of their life mostly at the age of 40-50.Their condition remains pity or months and they use to servive only by the help of medication.I am sure that this will help them a lot from recovering their health to a great extent.
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Madismommy and others - Just a couple of thoughts - first, axillary dissection does not doom you to lymphedema. It does increase your risk over sentinel node biopsy - but the fact is that the majority of women who have the full dissection do not get LE. If you exercise reasonable precautions when flying etc. (Wear the sleeve), and try to keep the weight down, you are more likely not to have problems.
When one of my 4 sentinel nodes turned up with a small met, I had a grand total of 60 nodes removed on my right side, which I think may qualify me for the Guinness Book. It's been over a year since then and so far so good. I do carry a tube of antibiotic ointment and a few bandaids in my purse so I don't have to panic if I get cut or scratched, and I've handed over gardening/weeding duties to a paid professional, but otherwise my life is unchanged.
The lymphedema paranoia will subside over time but keep the sleeve handy for heavy-duty weight-lifting or flying, and have the name of a good lymphatic drainage therapist handy in case you ever notice your arm feeling heavy. Attention to how any given activity (yoga or whatever) makes you feel is your best defense.
The other thing - if you are ER/PR positive and HER2 negative, even if you have one node involved, you should be asking for and getting the Oncotype Dx test done to help determine the value of chemo to your individual case.
Best of luck to all
Nan
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Wendy72- I also had my biopsy a couple of weeks tater my 39th bday and god knows how long this has been growing inside of my breast. There are different factors they look into, as you know there are different kinds of BC and different sub-types, it depends whether you are hormone receptor + or - whether Her2+ or-, lymph nodes involvement or not and of course your age, the younger you are the more aggressive the treatment is. I had a mastectomy chemo radiation and a year on Herceptin because I was Her2+ , I am 2 years out and I have never felt better. Also understand that every doctor and hospital have different protocols, in my case some doctors might have suggested I do chemo first to shrink the tumor and have a lumpectomy, it was mentioned briefly to me but I just wanted them to take hat thing out of me , I did not care about losing a breast as much as I cared about survival and I have always been proud of my girls but when I was diagnosed I did not care about losing one and you know what? It never made me feel less than a woman.
So whatever your treatment plan is, good luck and I hope you and your doctors will make the right decision . -
I was 39 at dx. I am now 43. I had chemo, rads and a year of herceptin. Lymph nodes involved. I have a surgery coming up and my ob/gyn said to ask my onco if I should take ovaries out since he will be "in there"...I am pre menopausal on Tamoxifen. Still have cycles and test negative for gene...not sure what I should do...For those of you who stopped your cycles, is menopausal tough????
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Nanorama,
Good info on lymphedema - thanks for posting!
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I am 27- diagnosed at 26 last December. I just wanted to chime in on the LE. I believe mine started about 5 weeks after surgery. I had an AND. I think a combination of things triggered it for me. I was very proactive about a sleeve and very cautious about lifting, etc. My arm just started hurting and I would wear my sleeve while exercising. It maybe have been a bit tight around my wrist. Also I was going to PT for cording under my arm. I think she stretched me just a bit too much and it through me into a flare.
My advice is to make sure your garmets fit properly!
Don't ignore S/S of LE. I wish I had been more proactive in protecting my arm from the medical professionals...
Mine isn't "that bad" but it's bad enough for me.
I don't want to scare anyone. If you don't have it, don't stress! But if you do, don't ignore it!
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Diagnosed at 39--right before my 40th bday....what a present.
Found tumor myself..was 1.9cm with 1 sentinel node involved. Finished chemo and rads. Had lumpectomy. Have two boys 9 &11.
Was originally diagnosed with cervical cancer last Feb. Had rad hyst (staged at 1b) was in recovery when found lump. Diagnosed with IDC in July 2010. Crappy year! Have my checkup next week for bc and hoping for clear scans! -
I had 32 nodes removed in December and I haven't had any issues with LE so far. I did take a trip to Jamaica in March and I purchased a compression sleeve for the plane ride. The stupid insurance company refused to pay for the sleeve because I wasn't actually diagnosed with LE. So annoying!!!
Rachel - Your boys are the same age as my boys. BC has made for some interesting discussions with these guys. I have 3 daughters, too. (7, 6, and 3).
For those of you that are ER+, what is your MO recommending about your ovaries? My MO is against me having them removed because he believes the negatives outweigh the positives. He said Tami has a proven track record and I should take it for 5 years and then we will re-evaluate the situation.
Tammy -
Tammy....my boys have weathered this ok. My oldest is very emotional...wears his heart on his sleeve and he has had a harder time.
I am ER+ but had rad hyst with oopherectomy for the first cancer. I have met a few who have chose to have the ovaries removed and others whose onco said not to do. My surgery was easy...had Davinci robotic but being flung into early menopause was kind of hard..had bad hot flashes but got easier with time. -
I'm ER+ and my MO is not recommending a hysterectomy either. He said there is more risk than benefit. I tried to get any of the doctors that I have seen along the way to agree to a hysterectomy - none recommended it.
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