Stage II w/Lymph Node Involvement
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The very first thing I was ever told about having cancer was that every woman's cancer is different. What might affect you in one way will not affect another and vice-versa. Your doctor is the best place to start and then read with skpticizism - then ask your doctor. Nearly every time I saw my medical oncologist I had a list (literally a written list) of questions that I wanted answers to. He was more than happy to provide answers to everything I asked. It was only this last time (the one month after chemo follow-up) that I didn't have any questions for him. I see him again in 2 weeks and I already have the list started again.
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I so agree. Always ask your doctor/oncologist; they are the specialists with years of training and experience. It's so easy as lay-people to misinterpret information on-line or anywhere else. Absolutely, keep gathering information - the best patient is an informed one- but always talk to your doctor/oncologist and ask questions about the information you find.
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Just adding my experience..
SNB's were negative ( Prophy mast on left breast) but I insisted on ALND on both sides(my Surgeon and I discussed this based on my tumor being against chest wall) and they found a 4mm metastaces to a "second level" node.
My cancer was multifocal, LCIS, DCIS, and IDC w/ lymphovascular invasion.
ER/Pr/Her2+++
Still here! 7 years 3 months
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Now thats scary... I had asked for a ALND and my doc refused saying it was not necessary... and my MO said the same thing.. and then one day when I was at my MOs office and saw a different doctor he asked why I didn't have a ALND... kind of frustrating... but my MO says the chemo would have killed any remaining cells had there been another positive node..a lot of trust going on here.
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Like I said to my RO, one day when I was frustrated with all the conflicting information "... it's like trying to play the damned horses..." Although I laughed when he agreed with me, it was a sobering thought. There are just no definitive answers. I wish they'd get some. SOON.
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Hi folks,
I just ran across this site and could really use some help. I am 39 years old and have/had IDC & DCIS, 2.5cm, Stage llA, Grade 1, 1/9 nodes, 99%ER+/99%PR+, HER2-, BRACA-, OncoType DX score of 13. I have had two lumpectomies so far and was scheduled for a third, but at the 11th hour called and cancelled. Instead had a port put in to do chemo first and a mastectomy after. I just finished my second round of chemo and am ready to quit. It sucks!!!! I don't feel that I am handling it gracefully at all and am so sick. I am scheduled to have 4 doses of A/C and 12 of Taxol. With the way that I feel right now, I'm thinking that I can maybe handle 2 more of the A/C maybe, and thinking of NOT doing theTaxol. I haven't talked to anyone about this yet and I know everyone will freak out. It was like pulling teeth to get me to agree to do it in the first place. If it wasn't for that one bloody lymph node I definately would not have done it. I guess my question is, is there anyone one out there that has stopped treaments early or had a similiar experience? If so, how'd you handle it? Any help, feedback would be much appreciated.
Thanks & hope to hear from you soon,
Audrey28
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Audrey28, I had a similar experience. I was diagnosed at age 61 with DCIS IDC < 1 cm ER/PR positive, HER neg. 1/11 nodes. Oncotype 18. I did four rounds of AC and had a miserable time. I had the port but I suffered from all kinds of side effects including hand and foot problems that kept me from walking. I also had neuropathy not only in my hands and feet but my face went numb. That's not supposed to be a side effect of AC but it was real. When I read that Taxol can cause permanent neuropathy I did more research. I found out that in studies analyzing the existing data, Taxol seems to show less to no benefit who are ER/PR positive. That study is available on this website. I emailed one of the prinicipal investigators of the study Daniel Hayes, MD and he told me that they are conducting new studies still underway to test that theory and without real outcomes I should do the Taxol. I should mention these results pertain to Taxol only and not the other taxanes. My onco was dead set against me quitting but I didn't want to risk permanent neuropathy since I seemed predisposed to it from the AC. So with the medical profession against me, I quit after the 4 rounds of AC. I also switched oncologists. It was 100% my decision and I know lots of folks disagree with me. I'm one year out from treatment (also did the RADS) and I still wonder and worry but I have gotten the feelng back in most of my body and I've stayed busy eating better, doing lots of exercise, and trying to cut back on stress -- anything to help the odds. My heart goes out to you. It's such a hard place to be. I'm sure lots of folks here will weigh in and tell you to keep going. But in the end you decide. Good luck with your decision.
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@ck_moma, Thanks for the prompt reply. Good for you for standing up for yourself and doing what you felt was right for you. I have tried to be as proactive as I can throughout this process. I've gone to 3 different oncology groups and 1 integrative doctor and they have all told me similiar in some ways yet very different things. So the confusing part is to know who to believe. I don't want to make decisions based on fear and I don't want to over medicate and trash my body if it isn't as effective for this type of cancer. One of the oncologists told me that Tamoxifen was more important for me than chemo. Another told me that RADS is overkill and that I fall into a gray area so better to do the chemo. Another told me "chemo is what we do for cancer." I'm glad of the fact that I do have options and it is not the kind of situation where it is do it or else, yet at the same time it's hard to know what is right. I would say that it makes me want to pull my hair out, but it fell out on it's own a few days ago. hehe. I guess at this point I'm just venting, but I am glad to know that there is someone else out there like me. Keep taking good care of yourself & enjoy life.
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Audrey.. Your diagnosis is very similar to mine.. I had lumpectomy, then chemo then MX (and due to MX could skip rads)... For me, I am glad I did the chemo, especially because of that one node.. From what I hear, cancer grows in cycles and so they give 6 rounds so as to hit on all cycles of cancer growth, so quitiing now would open you up to some rogue cell that hasn't been killed yet. Have you asked your doctor about Taxotere and Cytoxan instead of Adryimycin and Cytoxin with Taxol... TC is less harsh, but very effective.
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These posts are coming at a time when I really need it. I go tomorrow for my first onc appointment and to find out about the staging. The two nurses who work with my surgeon both told me that I'm doing well after my BMX on 3/21 and that positive nodes is not the worst news. I'm not afraid to do chemo and rads and fight this but I go back and forth between feeling confident and strong to feeling sad and scared. Today I feel better physically than emotionally. This is such a process, isn't it?
Hugs, Indigo0 -
Audrey, in comparison although are diagnosis is similar except I have four nodes. My oncologist indicated that if I had one less node she wouldn't have recommended chemo because of the grade???? In my opinion as you have already lost your hair:(, I would finish what you started. I am 44 and at chemo4 I wanted to quit, (not seriously however, just in theory) and myyoungedt son said "but mom than you will never be finished". I thought at that point what a very wise young man he is.
I am also do 20 rads to the nodes and will take tamox. At times I think it is overkill and at times I am concerned it just isn't enough.0 -
I did 6 x FEC-T and towards the end of my treatment, I was feeling very rough and that is with all the anti-nausea meds. I finished them and for me, it was some kind of comfort because I also had one of those rogue lymph nodes! I was Stage 2 and I feel that I had pretty much everything thrown at the cancer (surgery, chemo, rads) but I was confident with my Doc and just went with it. I am almost 2 years out and looking back--I wouldn't change anything. I needed the peace of mind that these treatments provided--I was on my 2nd cancer diagnosis within a few months. You have to do what you feel is right for you with the input of your Doc's. If it is nausea and pain--perhaps you can investigate other medication options with your Doc. I know that I had to change anti-nausea meds twice until I found something where I wasn't puking into the toilet!
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I am so grateful a non sentinel node was enlarged on my US because my surgeon found it, tested it while I was on the table, and did the ALND. Found one more non-SN that was positive out of 13. If they had done the SN's only, we would incorrectly have me staged and perhaps treated. Between me and my self-exam and that node's showing on US we may have saved my life. Start chemo this Tues.
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HI ladies - My tumors together before chemotherapy put me at stage 2, approximately 3.5 cm and I did not have any evidence of disease in the nodes. But, because of my oncotype (25) my MO and I decided on chemotherapy. So, I underwent TC x 6, (tolerated it fine....very doable), had BMX on 2/29 with SNB, 2/3 sentinels come back positive, underwent ALND and no other nodes were positive thankfully. I did not want to go to the TE route and then implant with my reconstruction; therefore, I did a direct to implant reconstruction with a great plastic surgeon and I am very pleased with how everything has gone, as far as recovery, and aesthetically. By the way, in addition to the two positive nodes, I still had residual tumor.....one at 1.5 cm and the other at 0.4 cm.
Now I am being sent to a RO for a radiology consult! I am in the "gray" area as far as needing radiation.....ROs like to radiate....I am sure he is going to recommend radiation, and in some ways, I am afraid of NOT doing it, yet, I hate the fact that I may compromise my implant with radiation!!!! UGH!
I have done everything pretty aggressively with BMX, ALND with a total of 20 nodes removed....that's why I had the BMX, was to try and avoid radiation......
I am 43-years-old.....
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Wildrumara... I would get a couple of opinions on the radiation... I had one micromet in one node and could avoid radiation by having the MX... I did have 4 doctors tell me that the MX was overkill, but I am the one who needs to sleep at night, not the doctor... I have heard the rule of thumb is 3 or less nodes and no need for radiation if you have a MX... so just ask a couple of doctors (other than the radiation onclogist)
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Audrey28....hope you are coping with the chemo better. I only have 2 more neoadjunct chemo to go. Did 4 AC and 2 Taxol...2 more Taxol to go.
Are you taking all the nausea meds for AC? Take Tylenol for the headaches and rest during nader. You can do it! I had so much nervous energy that between rounds 2 and 4 and painted my bathroom...3 coats and the trim! I'm a big believer in momentum baby...you'll get rolling. Forget that cumulative crap they feed you...momentum...
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Stacie...kudos to you! We have to hold on (a little) to that fear if it drives us to do the utmost to ensure our survival. I know there was at least one "reactive" node when they did my ultrasound. I didn't let them biopsy because I couldn't take any more than bad news (they pretty much me during the ultrasound it was cancer. Went in thinking cyst and within 30 minutes blew my world to hell).
My surgeon/onc said it didn't matter treatment wise for me (neo adjunct chemo). Although the chemo and surgery may get all the bad stuff, and I HATE the idea of having to wait 6 months after radiation for my swap out surgery...I am going to push for it if it shows up in any node period! Read too many articles on it's ability to decrease reoccurence and I'm only going through this crap once.
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Hi Ladies - Hope you don't mind if I join your thread. I'm in an interesting dilemna at the moment and am trying to make a decision between two "Sophie' Choice" options. Had a BMX a week and half ago. During surgery two SNB's were tested and both were found to be clear. However, when the pathology report came back, they had discovered 2.2mm cancer in one of the nodes, with some encapsulation features. They also found some lymph/vascular invasion in the breast tissues.
So now I'm faced with two options: 1) Go in for a second surgery for a full ALND and increase my lifetime risk of lymphedema, 2) Forgo surgery, but add 6 weeks of radiation to my already scheduled 6X T/C chemo regimen.
Like wildruma, I went with a BMX in order to avoid radition and to be able to do reconstruction with implants. Now I'm in a situation where radiation is back on the table. I'm told the benefits between surgery without radiation, or radiation without surgery are the same.
I'm most interested in hearing from those of you who have had full ALND treatment what impacts you've had from that. I have a real fear of lymphedema because I know it can be pretty debilitating if you get it. However, I'm relatively young (49), and in good shape so I believe my risk level is a bit lower.
Just really struggling with this decision. Needs to be finalized in the next two weeks as I have a "save the date" set aside for surgery on 4/27.
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Raelan, I had surgery in November, and lost 21 nodes. Don't think have lymphedema. I do still have some numbness in the right arm area and a little pain from time to time, but it keeps getting better. My range of motion is just about what it was before surgery. I am still protective of my right arm. I won't lift heavy things with it or reach too high. Hope this helps.
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raelan - sorry you find yourself in this situation. Fist, you already have lymphedema risk from your BMX and SNB. Being in shape and being younger do not necessarily reduce your risk - this board is filled with in-shape, slim ladies with lymphedema. I did have ALND 5 weeks after my BMX due to a post-op pathology finding of <20 cells (a micromet) in my cancer side SNB. My BS and MO both insisted on axillary clearance, and they are progressive docs. My ALND found a 6mm node further up. I had no issues after surgery but did experience a great deal of swelling from chemo and ended up with very mild lymphedema. It really does not impact me on a daily basis - I am careful and wear sleeves/gauntlets to fly or exercise. I did see a LE certified PT, and do manual lymphatic drainage and stretching exercises. I felt the risk of leaving potentially positive nodes was greater than the risk of lymphedema, and I still feel that way. Also, radiation raises your LE risk too, as well as tissue/muscle/joint/nerve damage so you need to consider that as well. This is a personal decision for you to make based on which kind of risk you are willing to tolerate. Good luck with whatever decision you make - I hope everything goes well for you.
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Your docs are right and there is no survival differences between your two choices. HOWEVER there is a huge difference in the risk of getting lymphedema. With total ALND the risk is up around 30%. With SNB and rads the risk is between 7 and 10% (confirmed by both my MO and RO and according to a few research papers).
I was in the same position as you a few months ago and have chosen rads. If I had chosen a BMX or SMX it was likely the RO would have still recommended some rads based on the size and LVI in the node anyway - and then therisk of LE would have been even higher.
I've also looked at the stats (more research papers) on supra-clavicular rads and have determined that it only gives a 1-2% benefit share of the rads so have said no to it. Being an oncology clin trial coordinator myself means I'm very stats driven and am quite firm (and sensible) about personal risks vs benefits analysis for me...
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Realan: I was dx at age 49. was in excelent health at the time with good exercise/eating habits and normal bodyweight. Had BMX and right ALND. 3+ of 17 nodes. 2 of which were larger than 2 cm. Did 6 tx of TAC. Rads was NOT recommended at the time because itwas 3 + nodes. If it were 4 + nodes, rads would have been on the agenda. I believe last year the recommendations have changed, Anyway, I did go many many times to a LE certified PT for massage and stretching post op BMX. I have not any issues with LE and I am almost 3 years out. I am cautious when using my right arm/hand. Like wearing gloves when gardening, keeping nails clean and wearing my glasses when working in the kitchen so I don't cut or burn myself! LE seems to be a crap shoot. Some women have problems with it even if only SNB was taken and some women never get it and they have more than 20 nodes removed.
Wishing you luck with whatever route you chose.
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Raelan - I was in a similiar situation and I opted out of the ALND, but did chemo and rads.
My decision was based on my pathology, and also getting additional opinions from several medical and radiation oncologists. I had a 9% probability of further nodal involvement and was planning on aggressive chemo, and fell into the grey area for radiation. For me, the benefit of ALND was to see if additional nodes were involved and if the ones removed were, then they were removed (but there could still have been others left behind). It would have made no difference in the recommedation for chemo or radiation in my situation. So based on the information I had, I decided I didn't want to increase the risk of lymphedema with doing both. I chose radiation because it was a field of radiation and not just going into there and scooping out an area.
Have you seen a radiation oncologist yet? The reason I am asking is because sometimes they have a different opinion regarding the recommendation of radiation than a surgeon or medical oncologist, especially since you have LVI and some encapsulation. So a radiation oncologist may recommend rads even if you have an ALND.
It is your choice and your body. Best wishes.
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Raelan,
I am another stage 2 girl. I was 46 at diagnosis, after finding a positive node with sentinal node bx, I decieded to do the ALND (my surgeon left it up to me), I already had the BMX and TEs and knew that RADs might not mix well with implants. No LE (yet), but I think it is forever a threat, but chance of LE also increases with RADs. I am almost 1 1/2 years out and I do believe the longer you go with out LE the better your chances become. Someone mentioned that BC is like betting on a horse race, how true. My advice, make the best decision for you, and don't look back.
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Raelan... I was fortunate and didn't need the ALND or radiation... chose to have MX to avoid rads.. but I think it is true that even if you had the ALND you may need radiation due to the vscular invasion... so you should check with the RO.
And if it were me, I think I would choose radiation over ALND because it covers more of your problems and has less risk of LE (this coming from a woman who chose to have MX to avoid rads)... AND if you find implants could be compromised by radiation, consider a flap surgery.
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Thanks everyone for your thoughts and feedback. This decision has by far been much more difficult than the one to have a BMX. My BS told me there's a 22% chance there's any further lymph node involvement, and after my case was run by the tumor board last Friday the majority felt I should go with the radiation option. So, that's what I think I'm going to do.
This of course impacts my reconstruction, but I'll deal with that later.
bdavis - I notice in your signature you went to Nola for a DIEP. I've been researching NOLA and now am much more interested in the type of reconstruction work they do since it appears I would need a flap procedure with RADS. I've already consulted with a PS and been told that I don't have enough abdomen fat for a DIEP on both sides, but may be able to do their new "FIT" procedure. What can you tell me about NOLA? How did you even get started with them? I'm more than willing to travel for my procedure, and now time is on my side since I won't be getting reconstruction until all my treatment is complete. I had skin-sparring surgery, but do not have TE's in. Any advice you can give regarding NOLA would be great.
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I also was told I did not have enough abdominal fat and yet the doctors in NOLA have other procedures when that's the case... I live in NJ and did have a consult in NYC with Dr Allen, but in the end, after flying to NOLA to have an in person consult, I knew immediately that this was where I would have my surgery. I ended up having hip flaps (from the buttocks) and a DIEP flap, so I got the tummy tuck and a butt lift and two full breasts. The doctors in NOLA are true artists and go above and beyond... something I find other doctors aren't always interested in doing. Please feel free to PM me... to get started though, just go the their website and fill out the insurance paperwork. That is the best place to start, with no committment.
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I have not seen this thread in months. Don't know why.
I went through 6 months of CMF chemo and now I'm back on the arrimidex.
What a trip this has been! But I don't have to tell you!
Now I have a hard welt under my mastectomy scar that they tell me is just scar tissue.
Well, I've been back on the arrimidex for over a week now and it seems to be shrinking.
This has me freaking out. Has anyone had scar tissue shrink so quickly?
I'm afriad it's a recurrence and that's why it's going down so quickly on the arrimidex.
I have to see a dr soon. Trying not to freak out.
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I´m stage IIb also. I´m not Her+
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I had something by my scar to and it turned out to be scar tissue. Go in and get it checked out....peace of mind is worth so much!
Blessing
Balsie
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