Stage II w/Lymph Node Involvement
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starbeauty--Wow--that is awful! I've heard of a few others reacting that way. I hated rads the first time (did lots of damage to my bowels and "backside") and was so bummed I had to do it again for bc. Like I said, my RO went real easy on me and got me through it with very little trouble, and I'm so thankful I didn't have all the problems I expected! Unfortunately the damage is usually permanent, and some doesn't show up for months or years! I also had a tough time with fatigue at the end--and I still have tired days and I finished chemo in Oct. and rads in Dec.0
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Wow... As fr rad, I am supposed to have rads this summer, but am 90% inclined to get PBMX instead. My cancer was on the left so my radiation would/could affect my heart among other things... plus its not just that and the burned skin; I have many "benign" thngs that need watching... not too inclined to watch anymore... I DO NOT want to go thru this again.
About nodes and chemo... because I had a micromet in one node, I am in chemo 6x... My onc said had my nodes been clean, he still would have put me thru chemo because I am 48, and tumor was border line in size... 1.9cm.... I am fine with that decision.
About radiating nodes only, I still need to meet with RO... I want to decide about the MX first... My feelings are that my breasts are skin and tissue and if I remove the tissue and replace with other tissue (or implants) and still have my skin, then its not a big difference... if I go thru rads first, I don't even have good skin... I know there are other options to resolve that, but trying to be proactive and think ahead.
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I just finished rads and made it through without any major issues. My skin held up very well--I did meet a couple of people who had worse reactions.
I had one node positive and had lumpectomy--with lumpectomy--Rads are an automatic given it seems. As someone else mentioned, chemo seems to also come as soon as you have a node positive. As with everything, you could refuse any of the treatment. My MO sat me down and went through all the survival/recurrance stats with each treatment and the decision was mine. I asked his opinion and he said to do whatever it took--I was below 40 at diagnosis with two small kids--so I figured I would take whatever I needed to. Made it through 6 chemo and then 25 rads (plus 5 boosters). Now finally finished (just last week). I have some peace in my heart because I know that I have done whatever could be offered.
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Hello,
Yes I've got the nodes. Finished chemo six weeks ago. On to radiation for three and a half more weeks. At night, while I am in bed, I think of nodes. When I get up, I think of nodes. All the time I'm thinking of those damn nodes! Not sure how they ended up being there when only one lit up ever soo slightly on the PET scan (and then looked benign in the cat scan). Also not sure how no nodes showed up on the ultrasound or the MRI and the one that they did biopsy came back negative. But yup, nodes here. I fantasize that it is a mistake and that I am getting the aggressive treatment as if I HAD four nodes. I decided not to get a second opinion. What if they found five then? I am feeling and doing very well. I hope that other node + continue to do well. I also believe each case is unique.Hard not to worry though.
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Kathleen, I too am a "node obsesser". I think it comes from the old days when people said "Thank goodness it wasn't in the lymphies" or when people hear you have LN involved you get the sad eyes. I knew from the get go I had one positive that was biopsied. Just glad it was no more than the 3 sentinels playing dirty. I no longer obssess as much as I once did. The oncologist tells me he's had patients with 22 positive that are NED for 7 years right now. Just try to tell myself the lymphies were doing their job and caught the BC cells. Anything that potentially escaped fell victim to TCH. I notice you are HER2 positive. My oncologist indicated that positive nodes or HER2 gets you a seat in the chemo chair. libraylil0
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First visit to onc today. Needless to say, I am very anxious. Any suggestions regarding questions to ask? Very stressed over my positive node-will the worry ever go away? Thanks for everyone's support - it means so much!
Kathleen/lil -count me as a node obsessor too!90 -
Kriskat good luck today. The biggest suggestion I have is if you can have someone go with you to be an extra pair of ears and a support to you for all of the waiting you have to do in the office. It also always helped me to write down all of my questions otherwwise I sometimes chickened out in asking them all since my doctors always seem so busy.
Kathleen. My nodes didn't show up on the MRI either, and I didn't get a PET scan since they were rushing to get me into surgery as quickly as possible. My involved node was significantly involved too, With that being said I'm not sure that it just missed the cancer there or if the time between MRI and surgery the cancer grew that much. I know in the month from my ultrasound to my mastectomy the reported size to the actual size of the tumor in my breast went from 0.6cm to 2.5cm with a very tiny tumor growing next to it. I know it did grow some since it was barely palpable when my gyno found the lump, but before surgery it was quite noticeable. Not sure if it was just that I became a lot more aware of the lump and that the technology misread my tumor or if it really was growing that quickly. My "node obsession" comes and goes now. I'll go a week living my life and not thinking about cancer and then wham something will bring things to tear level again. I'm hoping/guessing that those periods of not worrying will start to get longer as I get further from diagnosis & am not still going to doctors every 3 weeks, but I think the worry will probably always creep up before check-ups and other triggers. I'd love to hear from people a year or two out from diagnosis about how they are coping.
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I obcess too about the nodes.. about the size of tumors on MRIs and then the actual size, my BS said that the tests are accurate only to a point... After my ultrasound, the report said 1.2... the MRI said 1.5... it was actually 1.9. Of course I asked how it grew so fast and she said it wasn't... just the tests. My US to Surgery is was only 3 weeks.
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Had my trip to the onc today. It went really well-loved her. Her response about the node involvement was that it did it's job. She has agreed to let me start TCH on March 14 so I can still take our trip. She believes in living your life while going thru this-work, vacations etc. I have really good veins so we are going to wait and see after first visit how it goes and then decide on whether or not to get a port. She was just so confident I could get thru this and so confident that the drugs for my triple positive status (and the new ones coming own the pipeline) would have such an impact on my treatment. Now I wish I hadn't stayed up all night worrying. Finally, I think i mentioned how terrified I am of the scans....she will not order pet (too many false positives) but does want to do a ct of abd/chest. However, it is up to me and I'm still on the fence. I told her I am so scared of the outcome that I just don't know if I can do it. Thoughts???
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I had an ovarian cancer test going into it knowing it is the kind of test that can have inconsistencies (false positives etc)... I decided up front not to worry if the results were undesirable, because I know the test is unreliable and needs further testing if a positive result. The result was negative, but one point from being positive... So I went for the next test (a pelvic ultrasound) which was clean. I took away from this, that I will keep an eye on things and probably have a oofrectomy (sp) next fall.
So... my point is that take the test, but don't jump to conclusions if they call saying they see something... this is just a precaution.
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I've been on this site since October 2010 and this is the first time I've seen this thread. I was diagnosed in November of 2010. I had an MRI and PET scan prior to my BMX in December 2010. Both scans showed cleans nodes. I remember feeling so relieved. Then . . . I woke from my BMX and I was told the SNB had come back positive. One macro-met in node #1 and one micro-met in node #2. My BS performed an AND and the remaining 30 nodes were clear. I, too, have obsessed everyday after those stupid nodes!!! I can say that as un-fun as DD AC-T chemo has been I wake up each day knowing that I have opted for the most aggressive treatment available. I've done everything to give myself the best possible chance of beating BC.
kriskat - Will the result of the PET scan change your treatment? If not, I'd wait for any scans until after your chemo is complete. These scans aren't fullproof, as much as we'd like them to be.
bdavis - I also had discrepency between the original ultrasound and the actual pathology from the surgery. My onologist reassured me not to obsess about a couple of millimeters.
Smile_On - My tumor size seemed to fluctuate around my monthly cycles. I thought it got noticeably larger right before my period. My BS attributed this to the fact that the tumor was so strongly estrogen-receptive (>98%).
Tammy
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tsundermann... I too am 98% er/pr... so maybe that explains why mine had size discrepancies.??
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Thanks Tammy, I'm ER+ too so maybe that did influence it. Lucky me I was having my period the day of my surgery--no fun. But maybe that is why it was so large then.
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Kriskat--I had US/Xray/Bone scan prior to starting chemo and I would be lying if waiting for the results was not worrying--it was--but I had to keep reminding myself that better to have them done. I had to have a repeat bone scan in Jan of this year as my side was hurting--again--I was completely worried but all was fine. They don't do PET scan's very often in Canada so I haven't had one of those.
Like you, my Doc's were very positive with getting through treatment etc and outcomes. It helped to put my mind at ease.
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kriskat,
my adivce to you is do the scan. If a good result you will be so thankful and reassured that you did go ahead and do it it will help you to face your treatment better. If a bad result, you will know that and the docs will know how to treat if different treatment is necessary. I would try not to obsess about it, it's just a test. You still have other treatment to go, focus all of your energy on staying positive and healthy and keeping your immune system as healthy and ready to do battle as possible. Remember how silly you felt after staying awake all night before the meeting with the onc, this test too could have a good outcome for you and improve your mental status. Think of it that way.
This is my second diagnosis with a primary cancer. I met with one of my therapists soon after I got the breast cancer diagnosis. i said, "why me? how did God pick me to win the cancer lottery". He replied that some people would choose to look at it as God has a lot of faith in me to put a second challenge like this in my way. After having been through many ab/chest/pelvic CT scans for my cervical cancer diagnosis 2 years ago, I'll tell you that you want to know and it is a good idea to get a base line. That is just my honest opinion.
I think you should be focusing on the many, many positives you have going for you. You are only 36, you do have a child and a supportive husband. Think about older, infirm, or unhealthy people that get diagnosed every day with cancer that is perhaps more advanced and they still make it but it is much harder. When I was diagnosed wtih cervical cancer I had been married 11 months. We hadn't decided if we wanted kids or not. I have a now15 yr old stepdaughter who is a great kid and we are very close, but I didn't get to make the decision about having kids, cancer made that for me. I'm not trying to downplay your natural anxiety and the stress that comes from being dx'd with BC, but I'm telling you to count the blessings you do have instead of worrying about what if...you are young and strong and you can beat the beast.
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Supersally: I've won the cancer lottery too. I found out last week after a prophylactic ooph that I have ovarian cancer. I had my first appt with gyn onc today. He wants new scans before we decide on a treatment plan. But I'm definitely looking at more surgery and more chemo. I'm so bummed about having to do chemo again, but I am trying very hard to be grateful that this was found before symptoms presented and that it is, hopefully, early stage. I'm anxious about the scan, but I know it is necessary and can be a potential lifesaver.
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Ladyin Bama... Are you GENETICALLY Positive??
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bdavis: They didn't test before, but they are going to now. I don't have a family history of cancer, though.
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So sorry to hear that LadyinBama. I hope it was caught early. We are an elite group and let me tell you, not one I'd like to be in and sorry to welcome you.
I had the uncomfortable thought the other day that if I had had my ovaries removed two years ago when I had the rad hyst I wouldn't have gotten breast cancer as my tumor was highly ER/PR +. Ah well, you can't change it. My gyn/onc and the fact that I asked him to get mammograms before age 40 and was seeing him every 3 months for follow up are the reasons I was dx'd at IIa, not higher perhaps..
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Hi All,
Supersally - not sure about the possibility of not getting BC if you had the ovaries removed during your hyst. I had a total abdominal hysterectomy 10 years ago for multiple fibroids/heavy bleeding. Since I was 45 they said let's take the ovaries. They did not suspect any problems they just thought it was a good idea. On post-op path they found a benign 3cm mass in the right ovary, if left alone was the type that could have become malignant. The mass was not seen 6 months earlier on pelvic ultrasound. I felt that I had dodged a bullet. I am ER/PR+ and I was just diagnosed with BC last Sept. I am negative for the mutation, so who knows?
Ladyin Bama - Bummer.
Kathie
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Lady--I'm sorry you have to do chemo again! That was the worst part for me when I had my 2nd dx. One if the first things I said was "after all I've been through (with the colon cancer) now I have to lose my hair!" The chemo from colon cancer was very harsh, but at least I kept my hair!
Keep us posted--and know that I am praying for you!
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Thanks all, thanks for the prayers Tina. I go for my CT Scan Fri. morning and see the doc. next week, 3/3, to talk about test results and where we go from here.
Sally: I try not to think too much about the "what ifs" ... other stuff besides your ovaries make hormones though. That's why they put you on hormone reducing drugs even if you don't have your ovaries.
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I started chemo on Tuesday, so this is what is called day #3? Doing AC q 2 wks x 4 then T q 2 weeks x 4. Day one went ok, but I will need a central line port put in as veins poor for chemo though I had a good nurse do me that day. I have been following this forum topic as so helpful for me to know what to expect and advice has been great.
I do have nausea which I hate and instead of taking the zofran prn i have switched to routine q 12 hours and feel so much better. though it gives me a headache. and that i can deal with. i like the energy burst of the steroids but it is deceptive and eventually feels like bad diet pills/speed of years ago. does that go away?
I will need neupogen shots four days a week next week and thanks to info here i broke through my panic and talked to provider and pharmacist and i will not give myself the shots at $400 per shot, but will go in to the injection room to get them as this will then be covered better under my medical plan at a lower cost. (I have no prescription drug coverage.) Seems to me I should get a break for doing them myself, but our health care system is pretty broken in a lot of ways. I was also prescribed emend for nausea originally, but we switched that to generic stuff as each individual pill was $107! If necessary, I will get it, but so far so good.
Hope all of you are having a good day and good sleep at night.
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Welcome Joyce... you may benefit from reading the Jan or Feb chemo threads... they can be really helpful.
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LadyinBama,
You are right, live in the present, don't question the past. That is a good point about giving hormone suppressors after meno, hadn't thought of that. Called the breast surgeon's office to see if Oncotype test results are back and if so have been sent on to oncologist, whom I meet with Monday, and it was already closed for the weekend. So, wait till Monday I guess.
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Seerena:
I am stage II with one lymph node involved. The only reason I chose to take the chemo was because I am TN and was told that chemo is the only thing that helps that type of cancer. My right breast also had 2 small (1) mil tumors as well but not TN. one tumor dcis the other lobular. Lucky me I had 3 types of cancer. Funny thing they could save my left breast but not my right. I opted for the bilateral though. My onc really pushed the chemo because of the node involvement.
I think you have to evaulate all your options and go with your gut. This breast cancer journey consumes me all day as I am sure it does all of you. Glad we have these boards to vent and talk
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I am stage 2 with 1 node involved and chemo was presented to me with indication that I was young and do to what could to hopefully see the back of this cancer. I was under impression that node involvment=chemo.
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Thats what I have been told also... and I am just fine dotting my i's and crossing my t's so to speak...
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I think there is new thinking that some node involvement (maybe fewer than 3? not sure) does not automatically mean chemo. They take into account the Oncotype score to help make the decision. I had micromets in one node and was told that statistically chemo would not give me benefit. As I could not get comfortable with having a positive node and not doing chemo, I chose a less toxic, earlier chemo (CMF) to hopefully give me added benefit. Don't we love how the rules keep changing?
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I ended up having 2/4 positive nodes and asked for the Oncotype test. My insurance refused to pay for it stating that it was not validated for node positive breast cancer. It would have cost ~3500 to pay for it on my own. My Surgical Onc and Medical Onc said I should save my money because regardless of the score they would still recommend chemo not because of my pathology, which was really good except for those darn nodes, but because of my of my age 45 and family history. Lots of cancer in the family, but I am BRAC neg. However they left the decision to me on whether or not to pursue the test, and I did not.
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