Stage II w/Lymph Node Involvement
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I just wanted to clarify, that I not once have never made any statement like " thank god my nodes were negative!" or around those lines.
For the first 6 months of my diagnosis my docs, and I, expected positive lymph nodes due to my tumor size. I was doing neo adjuvant chemo. My onc said I had a 10% chance of my nodes being negative. He said he had seen cases with large breast tumors before and no nodes.....but the majority of the time they are positive. I came on the boards and saw all these little 1cm tumors no nodes blah blah...and felt like crap.
Well....I fell in that 10% of being node negative. Luck? Maybe I dunno.
My point is I know how those "thank god" statements sting. And I don't feel any better off than a woman with 1 or more positive nodes. I know how this disease can be unpredictable and sneaky. there are no gurantees. My BC was aggressive end of discussion.
Im glad this forum has been started.
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Lexi...I understand what your are saying! Glad you can share your thoughts so well!
In the big picture, we are all Stage 2 Sisters here...lymph node or not...we are Sisters In Hope!!
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Hi everyone..I just wanted to add, I am a nine year survivor now...I did CMF chemo
had three surgeries , one year of tamoxifen and four of arimidex...I finished up active
treatment 2 and a half years ago now...It is nice to have this forum, thanks...
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Hi ALL... glad to be here... I recently had a brain scan on October 23rd because of a couple of bouts with vertigo, but I found out this past week that the scans were clear and that the vertigo was probably caused by some inner ear problem... I am so relieved...
I am meeting with my breast surgeon soon to schedule a bi-lateral mastectomy because I had reconstruction/augmentation (reduction) and augmentation (reduction) in my left breast. The reconstruction didn't work...developed a hole that just recently healed and the bc breast is a mis-shapen, ugly mess... so since I am having the bc breast removed, I want to be symmetrical.
Regarding having positive lymph nodes, I remember when my breast surgeon first told me that my nodes were positive and I asked her, "does this mean that it has spread throughout my body?" ... and she said... "no, it just means that the cancer spread to your nodes and that they did their job and caught the cancer"... when the pathology report came back, it was found that the lymph node that was bothering me measured 5cm, but my surgeon said that they were impressed that when the node was examined no cancer cells were found on the outside of the node and there was no indication that the cancer had spread outside the node...so it did contain the cancer, based on the pathology report...
I look forward to getting to know you all... Take care, ~ Dee ~
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good evening,Anna!I have a question! how you make attachment to your letter.?thank you and god bless you!0
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SoCalLisa ~ I'm thrilled to see you here! Ladies, Lisa is one of the most uplifting spirits on these boards. She surrounds herself with beauty (flowers, food, nature etc.) and then takes exquisite photos and shares them with us here. Her calm voice of caring and reason is a huge bonus to us. LISA..... had no idea it's been 9 years since your dx, guess I'm not very observant. THAT'S WONDERFUL! ***SO HAPPY*** you're with us on this thread!
Nico
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Hi everyone, I was dx a little shy of a year ago. My journey has had some unusual twists and turns and now I kinda feel like I could write a book on bc. I had a 1.7cm sub areola lump I found myself when I was 35 years old. As soon as I felt it- I just thought "WHAT. THE. HELL. IS. THAT!!!"
exam, mammogram, ultrasound, biopsy. A call from my doc the next day- wants me to come in asap. Infiltrating ductal carcinoma. I chose to have a mx bc of the tumor location near my nipple meant it had to go too, plus at the time I had hoped I could be done with treatment after surgery. The idea of chemo scared the hell out of me. I had a SNB that was a false negative- so for two days I was one of those "thank god my nodes were negative! people" Until the final pathology came back and there was a 2.4mm spot.
They wanted to do further lymph node dissection of course. I had had an immediate skin sparing TRAM recon- the blood supply to my flap was over in my armpit which complicated doing a dissection. I was told my chances of nerve damage and lymphedema were good. The only reason to do it was to determine whether I should have radiation.
so I did more research- there are a lot of factors to determine whether to have radiation after a mx. Number of nodes (> 3- its automatic), tumor size, grade, and And newer research has indicated there is a benefit to having radiation if you have any positive nodes, esp for premenopausal women. So I refused further dissection and had radiation. For me another deciding factor was tumor location- inner quadarant/nipple area tumors are more likely to have undiagnosed spread into the intramammary node chain (runs up the inside of the sternum). So I had that area radiated as well. I am glad I had the false negattive now- lymphedema scares the hell out of me. I like to do active outdoor things-which seems to include all the things they tell you to avoid to avoid LE- exercise,scratches, bug bites, sunburn.
I finished TAC x 6 in June and now I am sporting about half an inch of hair. Today I felt my hair blowing in the wind for the first time in months! I started Tamoxifen about a month ago and so far I am doing okay on it so far with some natural supplements to help counteract some of its negative effects.
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Ok, right now I am very upset, so forgive me for venting. I had the Bi MX on the 21th of October, with immediate reconstruction with latissimus dorsi. Number one, my PS pushed for this reconstruction, seems like it's his favorite or something. He explained that he wouldnt' be able to put in the size I wanted (full C) with any other technique. He KNEW that it was still unsure if I would have to have chemo and rads until after the pathology.
After the surgery, I had no dressings on at all. Only the incisions had steri strips. It was a skin-sparing and - on the left side - areola and nipple sparing. When I got in the ICU (after 10 hours) the resident PS came to tell me they tried a nipple reconstruction on the right but she doesn't think it will hold, and they were able to put in 500cc implants directly. I had a surgical bra on which was size S (small) and they couldn't put it on because I was so swollen. My foobs were starting kind of from underarm, from the very first day I had a blister underarm on the right side. Then the areola and around got blistered, when in the morning after they managed to close the small bra on me (again, with no dressings). The PS never came to see me in the hospital, only his two residents. At the follow-up, I asked if I shouldn't get a refill on antibiotic (keflex) and he said "no, you'll be ok".The result was that in a few days that whole area started peeling off, oozing and looking awful. The "reconstructed nipple (all the time being a piece of red flesh with no dressing on) started getting black. When I was to the second post-op follow-up, he looked shocked, put me back on two antibiotics this time (Bactrim and keflex) and started ranting that we are a week behind schedule. Not to talk about the fact that thefoobs are ginormous, they bother me big time, they start from under my arm, and it can clearly be seen that on the right side the muscle was tunneled and set way too high, so that is an area that permanently rubs against my arm, in the armpit.
Now they talk about chemo. I had a 3 mm met in the sinus of the sentinel node. And after the chemo the surgeon wants to go in and remove more nodes to check them and see if I need rad or not. The PS said he wants the chemo delayed until I completely heal. Now if I will have radiation, what will happen with the reconstruction? where will they take skin and muscle from again? I am very scared of the chemo - I also have Graves Disease for 5 years now, I have no idea how bad the chemo will affect me. I've been reading lots of materials that actually say that the chemo does more bad than good, in most cases. I'm already regretting even having the surgery. I am seriously thinking that I'd rather live what little I have left in a decent manner, be myself, not some person with the brains addled by drugs, bald and mutilated just to live a little bit more of a non-life. Sorry if I sound so down, but I really am down. You can see the beginning of my story on the DCIS forum in the thread "just diagnosed with extensive DCIS".
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Dear Day, You are certainly allowed to vent, that is what is so great about this forum, no judgement, just help and encouragement from others. I am so sorry about your reconstruction dilema, prayers are coming your way for healing and recovery. In regards to having the chemo, it is very doable and I had it five years ago. I had bi-lateral breast cancer with one positive lymph node. My friend is going through it now, and she is still working part time, too. She says it is very doable, especially with the new medications to combat the side effects. Since you had some lymph node involvement, I am sure that is why they are recommending chemo. Hang in there and take one day at a time, it is so hard to have a positive attitude right now when you are feeling so yucky. I remember those days, but just remember there are better days ahead and you are a survivor on the day you are diagnosed. Do everything you can to combat this disease and I promise you, you will come out on top. And please have your friends lift you up in prayer, it works. God bless you, Kathy
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Thanks, Alyad for the hair info - just stopped chemo in September and my hair looks like yours does in your picture - I'm trying to figure out how long until I can transition from my wig.
Day - I am sorry for what you've had to go through. I also wanted to encourage you about the chemo - just make sure you research and get excellent oncologists who have staff and will treat your side effects. Now, I did not have the A/C and I realize that is a harder regimen. While I would never say this past summer on T/C was a vacation or easy, it was doable and manageable because my docs made sure I had every drug available to help with side effects. I know it's scary - I was also afraid - but what I imagined was worse than the reality. There is emend now for the nausea and I even had a 7-day patch (Sancuso) added which helped me tremendously. I did not get sick once.
As far as the reconstruction - that's where I'm at and it's confusing to me the differences in treatment across the country and with different docs. I can't figure out why your implant reconstruction was immediate. My PS only put an "expander" in after the mastectomy. Gradually he filled it over the course of the summer and fall and only in a couple of weeks will I go in for the exchange for the silicone implant. The nipple surgery then is another third outpatient in a few months after that. Yet, I have seen posts on these boards where they do the mastectomy and put in the implant immediately. Does anyone know why they do that? I understand why the body tissue recons are done during the mastectomy (like the tram flap, etc.) but why would they put the implant in right after the mastectomy, let alone try to do the nipple too? My thoughts and prayers are with you, Day for your chemo and please visit the chemo boards - everyone is a big help and support. You will find the strength to fight and make it through chemo.
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Kathy,
They put the implants immediately and didn't go for an extended expanders+ fillings +exchange because the health insurance I have now will expire in April (it's a Cobra after divorce), What I didn't understand was why they've put in such huge implants, why they did the nipple reconstruction right away and why did they leave me without any dressings after the surgery and stopped the antibiotic after a few days. If I would have known the LD is so debilitating I would have never chosen it, I would have just gone with the A size and TE for a month or two. Also, why he did such a radical reconstruction before even knowing if I will have to have radiation or not. Another thing - I am a smoker. before all this rollercoaster started, I was on my way to quitting, well, after the dx i started smoking again like crazy and I told the PS that I cannot quit, it's the only thing that is still keeping me sane. I read everywhere that LD is definitely not recomended for smokers, and you are supposed to quit a few months before the surgery if you want it done. I don't know, I just know I don't want to live like this. I shouldn't have even had the surgery, just let the disease run it's course but die myself, not mutilated and brain-addled by the chemo.
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Day:
I am so sorry you are going through all this. I know it is hard not to be discouraged. You can do the chemo and rads and get through it. Go to the chemo threads. You are not alone going through this and there are lots of us who did it who will tell you we are glad we did and you can too!
I'm not as familiar with all the recon issues and complications that come up, but there is the Exchange City thread here that is visited by a number of extremely knowledgeable women. Whippetmom is a wonderful woman who I am sure would provide feedback for you if you reach out to her. A number of women have discussed disappointing results with recon surgery, but it has been corrected and they are now very pleased. I'm sure you can find the support you need there.
Kathy16:
The original plan was to do all my recon at the same time as my mx: R-LAT flap with implant and L-aug for symmetry. However, I was informed that if the initial surgical biopsy of nodes was positive, they would to the L-aug and only the R-mx and put in a R-TE. This is because nodes meant radiation post-chemo. They thought it would be better not to put the newly moved muscle/tissue/skin under the stress of rads and they didn't want to delay rads.
So I am now done with chemo and rads. My PS wants to wait until May to do my exchange - 3 months after that, fipple, rest, then tattoo. So, this time next year I could actually be done. (?)Sometimes that gets me really down - waiting so long for all that, not to mention some hair (mine used to be pretty long, so that's even further out). But if I can enjoy the next 30 years healthy and feeling whole again. It will be worth it all.
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I am glad that we have our own place to expresss feeling and get support from other.
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(((((((((((Day)))))))))))
You have been through so much in such a short time, Day, you must be in shock. Is there any way you could see a second PS just to get another opinion? You might find new confidence in what your PS is trying to do.
I went through the full chemo shebang plus a year of Herceptin. I never felt brain addled. Sure, I forget little things like names and where I put my glasses, but to be honest, I was doing that before chemo. I too got that wonder drug (Emend) and didn't ever feel nauseous. They gave me something called Ativan in case I ever felt anxious and while I didn't take it often, it made me feel very peaceful when I needed to. Yes, my hair fell out (actually, I shaved my head before it did so because I didn't want to go through seeing hair on my pillow), but I did chemo during the winter and loved wearing soft hats all the time. I discovered I have a beautiful head and had to keep my family from rubbing it all the time. I felt nauseous after every surgery, but not with the chemo. I joined a group of women on these threads who were doing chemo at the same time I was and we shared tips and laughed together. We still keep in touch via that thread and others on this site. Chemo was very doable. You deserve to do everything you can to stay here as long as possible because we need you here.
Anna
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Alyad, you have been through a lot! I too have Lymphedema on the top of my list of concerns and go way out of my way to avoid it.
This is a wonderful group; I'm so happy I have found all of you.
Warrior, I asked my oncologist what I should say to people who ask: am I in remission, what am I? She told me that she considered me cancer-free after surgery, and that everything we did after that was to keep me that way.
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You know I read some great stuff about disease from a Buddhist perspective that i really liked. The main statement is that all disease is a temporary imbalance in the system and that if you don't give it a past or a future - just deal w/ sxs at this exact moment in time -that is all it remains. If you give it too much of an identity it gets a life of its own w/ a worrisome future and traumatic past. But if u ask yourself "whats wrong right now?" It is usually manageable and maybe asymptomatic completely. I thought it was interesting b/c for the most part one can certainly feel the treatment but not the disease. Since we don't know whats going on in there - why assume the body is not balancing itself? (with a little help of course). Here is to our magnificent bodies! Valerie
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Dear Day, I sure wish that I lived closer so that I could take you to lunch to lift your spirits. I think it is a great idea to get another opinion about your reconstruction issues. Hey, please don't think of yourself as being mutilated. I had a bi-lateral mastectomy with no reconstruction and it is just a new me. A friend of mine put it this way:My breasts betrayed me so off they go. She has quite a sense of humor about all this. We do need to get back that sense of humor, but it is hard especially at the beginning of our diagnosis. Please keep coming here for support and guidance. We all truly empathize with your situation and want to keep your spirits up. Also, please try to quit smoking, I am not judging, for I am a former smoker myself. God bless you, Kathy
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Thank you for the reminder to keep my chin up and all that, London-Virginia. I keep flopping back-and-forth between optimism and pessimism. I'm still going through the loads of info on this site. Its overwhelming. What a wonderful site filled with wonderful people this is!
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Thank you so much, ladies, for your words of comfort. I guess what makes me be like this is the fact that I had just ended a very hard struggle of 5 years - with severe hyperthyroidism (Graves disease). Finally, this year starting around May I had started to have again a normal life (due to the ATD and RAI to my thyroid) - and it all lasted three months, then wham!!! the BC. I feel I don't have any power to struggle anymore.
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<<<<<Day>>>>>> You DO have the power to struggle. Don't you get it?? This thread was made just in time!! WE will get you through this. Faith is taking the first step when you can't see the whole staircase! No one can say they have the exact same struggles and trials/tribulations as you, but, I know each and every person here has had some very dark days. Its okay to stay there for a bit, but , with help from your friends (which is US), you WILL pull up your boot straps and forge ahead. You can do this...YOU ARE A WARRIOR....Do we have scars? Absolutely! Do we wish it never happened? Absolutely! Are we still breathing? Absolutely!!
Violet...It is overwhelming but in another month you will be so much more educated and inner peace will be brought upon you! Please know THIS is the place to share!!
Valeriekd....LOVE THAT PHILOSOPHY! So profound...so true!
Anna...Thanks for the PM
I think I made the corrections now. Appreciate you have my back! My onco told me the day of my last chemo was my Caniversary Date..yet I find the day of dx, Jan11, the day of dbl mx, Feb 14 (woo hoo Valentines Day lol) and June 23 (last chemo) as all significant days. What is most important..they are days of my past...my future is ahead and I am healed with the grace of God!Girls..I know each and everyone of you have a heavy burden to carry no matter where you are in your journey. It is important you feel comfortable venting and sharing here. Don't be afraid not to post....there is NO judging here. Just caring, compassion and uncondtional love! We may not always have the answers but as woman, sometimes all we needed was to be heard....I am listening!
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Dx aged 45 after I noticed a thickening on the top of my left breast. DCIS and IDC, multifocal, largest tumor 4.6cm, lymph nodes involved (one completely blown), lympovascular invasion.
Tx Maxtectomy with auxiliary clearance (staph infection after surgery), 4 DD AC, 4 DD T (port inserted after first chemo, got another staph infection, port wasn't used until last chemo). 15 dd Rads with bolus everytime. Now on Tamox - port due to come out on Tuesday.
Had very bad reaction to Taxol (onc said only 1 in 50 would have as severe a reaction) was hospitalised twice due to excruciating pain. Still have a lot of muscle and joint pain, numbness in feet. Taking Lyricia to deal with the pain. Have some se's from tamox but they are usually manageable.
So would anyone venture what's in my future???
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Dear Ainm, I think it is great that you have a year out already from diagnosis and with today's progress with breast cancer research and the arsenal of drugs out there, you are going to see many more years of NED. You will make your own future by staying as positive as you can and reaching out to others as you are doing here. God bless you, Kathy
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Hi, thanks for kind words- my previous post talking about LE was just to explain why I didn't have ANLD. I don't have LE thankfully.
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Thanks for all the explanations about the recon - I only have my experience with the TE and did not know any other way was even an option.
Day - Warrior and others are right - please don't give up. And, although I never smoked, I have a dear friend who has quit multiple times - I know it's really, really hard, especially while under stress. I hope you are able to work things out and you will have others on the boards to help you through the chemo.
Thanks everyone for all the encouraging words to each other - it helps me just to read them. You (or at least I) have lost so much confidence since June and am still gradually trying to get it back. Sometimes it feels like it's growing as slowly as my hair!
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Ladies: Your strength inspires! I'm here to listen too.
Be good to you -
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Hi Day, I just wanted to mention that I had 4 AC and 4 Taxol and it really wasn't bad at all... I worked through all my treatments... Yes, around the 4th day out of the treatments, I felt some of the SE's, but I had family leave and I just took the day off and the next day I was fine.. I just felt more tired on the 4th day... The only painful SE with AC was a headache, about 5 minutes after the treatment, so after the first treatment, the nurse gave me tylenol right after the treatment and the headache subsided quickly... I tolerated the Taxol better, but I did develop some neuropathy in my hands and feet, not bad though,and it has now gone away... I had 35 treatments of radiation and I was fortunate enough not to get any fatigue... I worked everyday and walked over to the hospital.. I even asked my Radiologist, "are you sure you are really giving me radiation treatments because I am not experiencing the fatigue that a lot of women experienced!"...
I had a failed reconstructive surgery... I didn't have implants, but I had augmentation... breast reduction of both breasts and scar release in the bc breast.. Because of the radiation treatments however, I lost skin and devloped an infection and a 2 inch hole that I had to pack/dress, from Feb/2009 through August, 2009... It is now healed, but I am not satisfied with the reconstruction, the bc breast is very disfigured.... I have decided that I am going to have a bi-laterial masectomy in the near future... I am ok with that...
... I hope that you fight as hard as you can to beat this dreadful disease and understand that chemo is one way of doing that... I know that you can't see it now, but as you can see, we have all had chemo and don't have any regrets, at all... I looked at my chemo treatments as "hope", a way to "kick cancers butt"...
I really hate that you feel this way and hope that you allow us to help you through this and know that you are not alone and I hope that you can draw some comfort from us... ((((HUGS)))) ~ Dee ~
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This is my first post. I have had my diagnosis since 10/15. Two biopsies (tumos & lymph node) later They are calling it Stage II. I am having a lumpectomy and auxillary lymph node surgery this week. How long will I be out of commission. How much help did you all need right after surgrey?
It's a bit scary right now but I am very confident in the support from my husband, family and the medical team. I know after surgery I have chemo and rads in my future along with Hereceptin. Wow seems like a road!
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I'm also new to this. Mar0426, we seem to be in similar places right now.
My surgery was on Oct. 24. Lumpectomy - 28 nodes were taken out. Four nodes tested positive.
The involved breast is still very sore. No swelling, fever or redness, but lots of discomfort. I'm using my arm for almost everything. The only complaint there is the picky sensations that are constant. Everything IS getting better, but it seems to be taking so long. Frustrating... Ice packs seem to help, as well as a very good support bra. Just wondering what time frame others experienced?
My four months of chemo will begin next week, so wig shopping begins soon. Any tips on what everyone prefers? "Real" or synthetic?
Wating for test results to see if it has spread to other organs ... CT, bone scan completed last week. Waiting is so difficult . . . as we all know. Have others had these tests, and if so, did any test positive for spreading to other organs? If so, did the protocol change?
Trying to stay positive. This is my second experience with cancer - the other totally unrelated - and this seems to be much more difficult. I'm pretty upbeat throughout the day, but once the sun begins to set, my anxiousness comes back.
Your posts have been helpful. It's great to have support from people that are going through the same thing. Thank you.
Susan
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Dear Michlady - glad you have taken a step forward on your journey. I had a lumpectomy which left me pretty sore for quite a long time. Arnica cream (for bruising - yes I know you can't see any!!) is soothing, as is Aloe Vera gel. After a while you may get some sharp pinging pains - this is the nerves coming back to life. Also, it is good to very lightly massage the breast and that area as it keeps the blood flow going and can help reducing any potential scar tissue. Drink plenty of fluids all the time to keep flushing stuff out of your body. Very best wishes to you. xxx
Violet - I know exactly what you mean about going from one extreme to the other coz that's how I felt too! I didn't really mean to say you should keep your chin up - feel free to scream actually! IT is just that as you go further along with your journey, you will find some things worry you less, and to begin with you are in shock about the whole damn thing. Slowly as you move forward in your treatment, you understand better what is going on, and importantly, you are finding your way to solutions to your current position. It gets a bit less confusing reading info and noticing that lots of people have varying diagnoses so each person's journey is unique. But we are all the same in that we all have the same disease. xxx
Mar - I felt quite good quite quickly after lumpectomy. Before you go into hospital, it is helpful to move things in the kitchen - move from high shelves to lower shelves things you need to get regularly. For some reason you aren't supposed to do hoovering for quite some time. I am afraid I ignored this but didn't push the hoover in long pushes, just sort of did little pushes. OR you could just tell the family that house work is out!!! Very best of luck for your op - xxx
Valerie - interesting thoughts! For me (and of course everyone feels differently) I have never given cancer any identity at all. I don't feel like I have been invaded, or that it was somehow my fault , or anything similar. I don't personally see things as me kicking cancer out or what have you. For me, it is just a disease that arrived and which I hope equally quickly buggers off. It has no thoughts, no soul, no intention. It's just a sort of germy thing to me. I think I p[ropbably do find it helpful (sometimes) to kind of downgrade the situation. IT is just to tiring and upsetting to feel shitty every day.
Hope everyone has a peaceful week -
xxxx
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Thank you, Virginia, for your response. I'll try Aloe Vera gel and light massage. I've had the sharp pinging pains since the surgery - I'm either getting used to them or they're getting a small bit better. Water! I have to remember to drink, drink, drink! Thank you!!!
Love your response to Valerie. That is how I am looking at this - or trying to, at least. Hoping it qickly "buggers off" as you put it
Susan
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