Positive nodes with long term survival
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All of you are giving me hope and that is what I need! This is my second rodeo with breast cancer. The first time in my right breast, stage 3b, 10cm tumor, grade 2, er+, her-. Now in my left, stage 3 maybe 4, (haven't had surgery yet) er+, her-,. Taking neo adjunct treatment now. Had two positive nodes the first time, not sure how many this time, but at least 2 that they know of. It was 6 years between cancers.
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bump
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I don't know if I posted this already but I saw my BS a few weeks ago and she told me she had a patient 10 years ago with 28 pos nodes. That gal is NED and feeling fine to this day!!
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A couple friends of my parents came to visit me this weekend to raise my spirits. Been a little low going into my last A/C treatment this week. The woman was diagnosed at 34 with 7 positive nodes. She had a BMX with no reconstruction. And this was 28 years ago. She was very gracious in talking to me and if I hadn't met her with my own eyes I would have thought she was an urban legend. She has 2 grown children and 3 grandchildren. Really did my mind good so I thought I would share with my fellow BC sisters.
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Thank you for posting! I love this thread.
Momof2 last AC, that's wonderful. I hope you feel well and SEs are mild for you.
Laura0 -
Momof2...I am mom of 3, and still here and doing well a few years out! Thank you for that story. I rarely come across people with as many nodes as myself so I appreciate all the stories!!
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I notice there are stage IV's with 0 node involvement and small tumor sizes... ?? If we're looking at stages, then that shouldn't be... It's all so confusing, isn't it? Grrrrrr!
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Geewhiz,
Lots of people have as many and more node involvement than you! I like what I read on here about node involvement meaning that our lymph nodes did their job. I had six nodes involved and the intramammary nodes were "suspicious." Since they don't know about them for sure, I've decided that they weren't there! LOL!! Also, one of the 6 nodes had microinvolvement and is debatable by some docs if it counts as one - so now I'm down to 5! Hahahaha!
Be well!
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Pooh, I agree it is very confusing and F'd up!! Too many times I am seeing er pr + with mets and that really sucks!! I am just sitting waiting for the other shoe to drop. My luck sucks so I know it will happen at some point. I am not having a good last few days and in a downward spiral of self pitty and hopelessness, again. Does this ever go away? Why is there no cure yet? Stupid drug companies! Is the ol might dollar really worth it? ({{YELL}})
I hope everyone has a pleasant day and I am sorry for my rant!!
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Cgrayoh: PLEASE RANT AWAY !! I'm feeling soooo much like you right now. While at a massage last week, I heard the therapist say to me how she didn't believe in conventional medicine anymore. The doctors are not focused on healing us because that would mean their jobs and of course, their money !! Sounds about right to me. I'm convinced there were cures years ago for all kinds of disease, but it makes more money if it doesn't go public. GRRR
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Winnie, many Stage IV women have not had surgery to remove the primary tumor or lymph nodes as it is considered "closing the barn door after the horse has run out" by many doctors. Their diagnosis comes from a biopsy, and a scan has indicated the metastasis. Therefore, their tag lines may indicate a small tumor and no nodes.
So, it doesn't mean they didn't/don't have cancerous nodes, just that they haven't had the surgery that would give them that kind of information. However, more doctors are predicting longer survival rates for these women if the primary tumor is removed (depends on other aspects, too) so we may see a trend to remove the tumors in all stages over the next few years.0 -
Winnie & NancyD: I had the same question as to why Stage 4's may have 0 positive node involvement. That is due to the cancer "bi-passing" the nodes and is in the blood system, according to my onc. Hope that helps.
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Glad my nodes caught this crap. Hope it did not escape and if it did that nasty cocktail of taxotere and cytaxin hopefully killed it off. This is a new normal and it sucks, that worry for me never seems to go away. But I bought a horse this weekend and now I will focus my energy on making him a champion pleasure horse. This will distract me from thinking about the C. I am looking foward to spring showers and horseshows and swimmign in my new pool with my new and improved boobs!!
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ckgrayoh, So happy to hear about the new horse!
Did you get an Arab? Do you ride western or english (is it still called english or is it now all dressage? I have been out of it for many years.
)Cyndi
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Shelly, my question is how did the cancer get to the nodes. My cancer was far from the nodes. When I asked her about this, my MO said they probably got there through a blood vessel. Well, that concerns me. If they were traveling to the nodes through the blood, couldn't they have gone somewhere else, outside the breast? My path report said no vascular involvement, but what does that mean? Seems to me that a small number could have escaped. I hope not, but the fact that they traveled through the blood to the nodes seems to indicate that's a possibility.
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Glad I found this thread. Yep, many, I, too had a lot of node involvement. My mother had BC and died of the disease over 40 years ago (trust me, we have truly come a long way). I have never missed a mammo in over 30 years but had blown off my last GYN appt so made one. While there she did a breast exam and found a tiny lump, called the imaging place and told them she was sending me over and wanted them to work me in for a mammo and ultrasound that very day. Radiologist came in and said it didn't look good. As I was walking to my car my cell rang and it was the GYN who told me they'd just called her with their fears so she already called my breast surgeon. She'd asked him to see me the next morning for a core biopsy. Wow, what was supposed to be a normal GYN appt turned my life upside down in less than two days, BTW, I'd had a mammo 9 months prior and it did not show up on that. They actually went back 5 years and nothing was ever seen in the vicinity of where this tumor was found.
I decided to post because I rarely see those with a lot of node involvement (mine was 17 out of 20). The oncologist blew it off and made me feel like I'll live forever but the oncological surgeon made it sound so doom and gloom and told me I was in for some rough treatment. It was categorized as pretty aggressive and true to the surgeon's word it was pretty rough - 10 months total of chemo and radiation and just began Arimidex for probably 5 to 7 years if I can tolerate.
ck55 - you bought a horse, me - - after 10 months of extremely aggressive treatment I'm working on my bucket list. I love to travel and have somewhat in the past. I had two friends that made treatment bearable by setting up little surprises for me along the way which helped a lot and they had been talking about how we all need to go someplace fantastic. Since I am over treatment and presently NED, we have booked a once in a lifetime cruise for the fall. Cancer has changed me (and I am sure all of us) more than I could ever imagine. Don't want to let any grass grow under my feet!
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I bought a 6yo paint gelding. He is a beauty with 2 blue eyes. Vet check tomorrow then he will be coming home probably next Friday. I am very excited!! Starting COSCA shows this spring if he is ready.
I am also hoping to take a trip somewhere in the next couple of years. I woudl like to go to Puerto Rico or Ireland. I hope you have a great cruise!!
I also have 17 nodes, my onc says that he staged me to treat me now that I am thru treatment he has high hopes. He has a patient that had 15 nodes 9 years ago and she is NED. My BS had a pt with 28 nodes 10 years ago and she is NED. So I am hoping to be here in 5 years posting that my horse is a champion western pleasure horse and that I to am NED!!
Have a great day everyone!! ({HUGS})
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Thanks for posting. Damn nodes! I'm doing well. I just booked a trip to California for spring break. We live in Chicago. I have always been a good saver or I would put my money into our house. Didn't travel much. Not anymore. I've always wanted to go to California so me and the family are going from San Fran down to LA for a weeks vacation in a few weeks. This has changed my outlook on alot too, for the better. Now I'm trying to figure where to go next. Have a great day!
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Yorkiemom wrote: "my question is how did the cancer get to the nodes. My cancer was far from the nodes."
Yorkiemom, our lymphatic system is very similar to our blood system in that it covers our entire bodies. We have hundreds of lymph nodes scattered throughout our body and these nodes are all connected by lymphatic structures similar to veins. The lymphatic vessels contain lymphatic fluid which is carried throughout our body similar to how blood is carried through our veins. The lymphatic fluid is filtered through our lymph nodes and ultimately emptied into our blood stream where it is excreted through our kidneys.
No matter the location of a cancer tumor, there is usually a lymphatic or blood vessel near by. When a cancer becomes invasive it means it can possibly travel through the body by means of the lymphatic system, the blood system or both. If a pathology report states no evidence of vascular involvement that typically means there was no evidence of the tumor invading a nearby blood vessel. If cancer is found in a lymph node, it means the cancer found its way into a lymphatic vessel and was then transported to the lymph node for filtering. The job of the nodes is to filter and remove waste products of the body. A node positive for cancer was doing its job, trying to filter out those cells. Breast tissue has more lymphatic structures than blood vessels so we most often see breast cancer spread first to the lymph nodes in the breast area.
Anytime a cancer growth has become invasive, there is always the risk of cells spreading to other areas of the body. Fortunately, surgery and radiation can help eliminate cancer in the local area of the tumor. Chemo and hormonal meds are systemic treatments that can kill off cells possibly already circulating throughout the body. There are no guarantees that our cancer will not spread, but by treating positive nodes both locally and systemically we certainly improve the odds.
Below is a photo of the lymph nodes and vessels in the breast/chest area. This is part of a poster set I own from the ACOLS (Academy of Lymphatic Studies). I think it helps when we can really visualize the extent of the lymphatic system in our bodies and realize just what a marvelous system it is in keeping our bodies free from toxic waste products as much as it can.
I hope this helps answer the question of how cancer can spread to the lymph nodes. I am over 6 years out from 23/23 positive nodes after my second BC diagnosis. I continue to be grateful for every day that I remain NED. Live for today...this moment...that is all anyone on this earth has for a certainty.
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Wow, LindaLou! Thanks so much for that info! I really didn't know we had lymph vessels. Thought there were just nodes that fed into the blood stream. We were so shocked when 2 of my nodes were found to be positive, although micromets. Every scan and doctor indicated no nodal involvement. Hopefully my lumpectomy, axillary node dissection, rads and hormonals will clean up any strays. Thanks again!
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Yorkiemom, I see you are a grade 1 as am I. If I had one less node involved I would have been able to skip chemo. I read from your post that you were able to. Did the onc talk about chemo at all with you? It pisses me off the one extra node.
The bs didn't think there was node involvement so it was a surprise after the pathology report came in. As you know chemo may not work so well with grade 1. But it does work. So I am hoping it pushes out those rogue selves.0 -
Whatashocker3, everything hinged on the Oncotype score, which came back at 14. My MO as well as 2 others agreed that chemo was not indicated for me. In addition to the Ocotype, I am over 60, ER(95%)/PR(90%)+, and as you said had a low grade. Statistically my long term odds of survival were better without chemo. I know, weird, but chemo has SEs that can be life threatening, especially for old timers like me. : ) Have you done an Oncotype test? At my medical facility chemo is only madatory if more than 4 nodes are positive.
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We don't do octotype testing here in Canada if nodes are involved. So you are saying that if I was in your neck of the woods I wouldn't have had chemo recommended to me. Is that because of the grade? I am also 44. So premenopausal. Where are you located and where r u being treated? The octotype score I have seen cam be high or low with a grade 1, but typically low. I am on chemo #5 as of tomorrow and it really hasn't been that bad physically. The emotional side has been more difficult. But I must say when you lose your hair that is a toughie.
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Whatashocker3, I meant chemo is not automatically recommended with 4 nodes. But if, for instance, somebody had ER- and/or a high Oncotype score combined with a young age, and you are considered young for bc, chemo would probably be recommended. That's my semi-informed opinion. I'm being treated at the University of Kansas.
Edit: Also the grade is a big factor.
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Yorkiemom, I think having the low grade is difficult, when you think it should be good news. The chance of reoccurrence is supposed to be low which is supported by your octotype number. Are you on hormonals? I assume you are post menopausal. So either than the nodes I would feel pretty comfortable that I won't revisit this episode of my life. Most days I figure I will get through this and not look back. The stats support that idea, but there is this little man that sits on my other shoulder and whispers in my ear and I get a worrying again. I must say being in the middle of treatment is difficult to keep your head up at times. You have your good days and you have your bad days. Sitting on either side of the fence isn't easy. Either the chemo fence or the didn't have to do chemo fence.
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I know EXACTLY what you mean Whatashocker3. When we got the dx, my husband and I felt like we'd been hit with a 2x4! Yes, I am on Exemestane (generic Aromasin). Both you and I have good stats, but that evil little man's voice is hard to always ignore. I'm already dreading my next set of scans in 4 weeks. But I am glad my MO was clear about no chemo. I even got a second opinion from somebody not affiliated with KU Med. He concurred. So I think skipping chemo was for the best. I think the hardest place to be is in the middle of the Oncotype scores, where the decision is up to the patient. I had determined that if I fell there I would opt for chemo.
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Thanks for the post Linda. That was informative. I choose to believe that my nodes caught that nasty stuff from getting anywhere else and IF there are little guys running around my body then the chemo killed them off. Least that is what I tell myself to get thru the day.
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Cheryl, are anywhere near where the h.s. shootings took place? What a horror and tragedy!
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That's what I choose to believe as well. I had only one node affected, but a huge tumor.
Cheryl......would love to meet your new horse. He sounds like a darling. He will also keep you exercising, but it will be fun. Bet you fell for those blue eyes.
You guys will be learning to work together for the upcoming shows. Is he a bit vain??? That will help in winning over the judges, as will telling him what a handsome guy he is.
Congrats on this great new chapter in your life. - Claire
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Yorkiemom, even in Canada they wouldn't have suggested chemo with 3 nodes. So I think you are doing the treatment method you are meant to do. I just had that extra damn node. In my mind that is because I was meant to do the chemo. It isn't fun:) and veins bald is hard emotionally, but chemo hasn't been unbearable. It is just that I feel my life is on hold until I am complete. Not all woman deal with it this way but I have kinda choosen to reduce my outside exposure to life until I am done.
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