Stage 2 Sisters Club
Comments
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bc101 - get some physical therapy. A lot of people have this issue after MX/BMX - make sure you see someone lymphedema certified - not necessarily for LE but you need someone who understands the risks for patients who have had nodes removed.
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I have seen several physical therapists who are qualified, one at Mayo and one at my primary clinic LE certified, but it still happened despite all the intervention.
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bc - bummer!
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Yep...just really frustrating. I guess this is my cross to bear. I didn't have chemo or rads, thank goodness, and so far no LE and no SE's from Aromasin. In the fantasy world of Let's Make a Deal With Cancer, I'd say give me a frozen shoulder in exchange for no more cancer - ever!
I can dream, can't I?
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bc101 - my MO and Ortho doc said it is entirely possible to get shoulder damage from tBMX given how surgery techs place your already vulnerable arms tied up in an odd position for hours. I buy that bc my troubles started within hours post surgery and the pain was acute. I'm starting PT for frozen shoulder and thank you Special K for suggestion, I will request an LE certified PT this time.
I have done cortisone shots with no success. My pain extends into my neck and down into the arm... It is hard to know what is what. Are you all frozen shoulder ladies dealing with pain beyond the shoulder itself ?
Hugs, Nisa
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Sorry I am a bit late to the discussion regarding SNB vs ALND. I had a marcronet of 1 cm in 1/3 Sentinel nodes that was ionly seen in final path as well. It was almost as big as my IDC tumor. So my MO concluded my cancer "likes to jump" so onto chemo 5 weeks post surgery and then will do 7 weeks of radiation in the fall.
The week after my surgery a meta analysis came out looking at the outcome of radiation for 1-3 positive nodes. And its highly beneficial. I wonder if that is part of why they don't do the ANLD as much. Here's the link.
http://www.thelancet.com/journals/lancet/article/P...
I was skeptical about need rads prior to the study bc I was going to get chemo anyway but I found it really eye opening.
Unfortunately I developed LE after round 3 of AC. Trunk and upper arm, and rads will likely make it worse
But so far no LE flare on Taxol. I did have one round of chemo in the node removal side just bc I developed a Clot around my PICC in the other arm 3 days before chemo was to start and they thought the risk of delaying chemo was greater than the LE with only 3 nodes removed. Oops. Anyway I hope the link helps
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Clarrn-your story is a little similar to mine. I had macromet of .4cm (and another smaller micro) on one of my sentinel nodes, of which I had 5 removed. My IDC tumor was .5cm, so the node lesion was almost as big as the breast tumor. My MO also felt this was significant and chemo was suggested. I decided to have the ALND to avoid radiation and my MO actress that we essentially "treated the node area" with surgery and no rads needed. Yah!
I didn't know I had invasive BC until the path came back on the sentinel nodes. We all thought I had multi-focal DCIS. Thank God for unclear margins on my lumpectomy and for the SNB, it's the only way I would have know about it and I'd be in a lot bigger trouble if I'd waited until next year for a mammo.
I would like to check in with a LE massage specialist to see if I have lymphedema, the arm feels a little tight and some numbness but doesn't appear swollen, hard to tell.
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Clarrn - yes, that study made me go back for 2nd and 3rd opinion for rads as I had a micromet in one sentinel node. But they all said no. The study was done before the days of sentinel node biopsy and the discoveries of molecular biology of tumors and the use of tests like the Oncotype. I am still considered in a grey area. As far as guestimating goes, the docs all point to my low score on my Oncotype as the best indicator of recurrence. I went with my gut feeling and doctor's recommendations of no rads.
Alli - I often have the same tight feeling in my arm, but no obvious swelling. I hesitated going to see someone for a long time. I finally saw an LE specialist and she massaged my arm, which felt good. At another visit I had a PT (not a specialist) massage the incision area under my arm and that seemed to feel better afterwards. But 2 days afterwards I got a slight sunburn and my wrist swelled up. I don't know if there was a cause and effect from the massage or not. Probably not. I was out in the sun and it was really hot that day. I think massage can help a lot as long as you find the right therapist. Good luck!
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Clarrn - you might be interested in this article. I'm not sure how it will apply to you as you have not only DCIS but also IDC. Have you had the Oncotype test done? It can really help in making treatment decisions. They have studies showing that it can now help in making decisions about radiation, but only with DCIS patients, I believe. Anyway, you might want to show this to your doctor and request the Oncotype test if you haven't already had it.
http://investor.genomichealth.com/releaseDetail.cf...
All the best to you in your upcoming treatments!
Edited to add: wow, I just noticed you had a large tumor like mine. They don't really know how large mine was since I had neoadjuvant therapy and my MRI and other imaging wasn't accurate. They're like who knows....6, 7, 8?? Oh well...it's gone and that's all I care about!
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Nisa,
I have neck pain, but I had that before my frozen shoulder. My doc recommended high doses of NSAIDs or cortisone shots but I am hesitant to do either due to side effects and LE risk. I think it's a matter of finding the right therapist who can work with you and that you trust.
Have you tried acupuncture?
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Yes, unfortunately the rads discussion is done for me anyway as they are unable to get clear margins for my DCIS even with bilateral MX so it's rads either way for me. And there is a large difference in micronet and a 1 cm macro.
bc101- the meta analysis just came out Mar 19, 2014 so that wasn't before all those advances (maybe I linked the wrong thing!) Here in Alberta oncotype was not funded when I underwent surgery at the end of Feb. It would have cost me almost 5 grand out of pocket to have it run and with having a 1 cm macromet and being only 30 years old chemo is a must. My grade was 3 also so there is no doubt that my oncotype would have been high.
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Clarrn, sorry to hear about the margins, but it sounds like you are getting the the best care and treatment for your individual case. Good luck to you - I wish you all the best in your journey ahead!
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Mommato3, thanks. No ALND was my decision. I find out this week my chemo schedule and meds.
I think my port incision looks horrible. The MS incision is long, but a fine line. The port incision right now is short, thick and lumpy. lol. Dr wants me to start massaging my chest and underarms. I am finding it hard to do, but need to knuckle up.
So glad I found you guys.
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Good morning all. Just checking in. Hello to new members. Its been over a year now since my wife's diagnosis. We had our 12 month checkup Friday the 13th! Yikes! Sitting in the Oncology waiting room made us very uneasy as I know you all can relate. The checkup went well. Her Ultrasound and Mammogram showed nothing new! We wanted to do a MRI but our insurance denied it and it pissed me off but our oncologist didn't think it necessary. He made us feel good saying its all behind her now. She has to go for infusions twice a year as her bone density test was not good ans she is on Arimidex. The good news is that it can be reversed and he said the bone drug is known to help lower the risk of recurrence. Next up checkup with her BS in a few weeks, the reconstruction in September. One day at a time! Hang in there everyone, You will get through this!
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jdboct- a milestone -12 months. I am 3 1/2 years out from DX. I had osteoporosis so my ONC switched me from Arimidex to Tamoxifen. Since Arimidex attacks the bones I'm wondering why instead of infusions he just switches your wife to Tamoxifen which actually strengthens the bones. Since I switched my bone density test improved dramatically. Actually I get more nervous b4 a mammogram than my Oncologist appt.
Diane
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Diane,
She handles the Arimidex well, no side effects. The bone density issue is a genetic thing as well. Her sister has osteoporosis and is 52. Alice is 58. We will try the infusion and see how that works. Glad your doing well!
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jdboct - good. Believe me if I had a choice it would be Arimidex not Tamoxifen. I tolerated it a lot better.
Diane
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Mind if I join in? So glad I found you guys over here! Diane - does Tamox really strengthen bones? Since I've been on it I was diagnosed with bursitis in my hip - of course better than the mat we thought it was!
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Kayce234,
Here is a little info about Arimidex and Tamoxifen and bones-
"Both drugs cause hot flashes, but unlike tamoxifen, Arimidex does not cause blood clots or increase the risk of uterine cancer. However, there is a down side to being on Arimidex. Women taking this drug have more problems with bone fractures. Tamoxifen blocks estrogen in the breast, but it acts like a weak estrogen outside the breast, so it stimulates bone and keeps it from getting thin. Arimidex, on the other hand, works by preventing the production of estrogen. It doesn’t have any estrogen-like effects, so women taking this drug have more bone thinning and fractures.
This side effect shouldn’t be taken lightly, as bone fractures can lead to serious complications, especially in older women. If a woman has a history of osteoporosis, Arimidex may still be the best choice for her. All women should have a bone density test before they start on Arimidex. If a woman’s bone density is low, or if it drops while she is taking Arimidex, she should consider taking calcium supplements or prescription drugs, like Zometa or Fosamax, that prevent bone loss. "
So our oncologist likes the Arimidex and as a matter of fact he called my wife yesterday and told her to take 1000 units of vitamin D along with a calcium supplement like Citracal. She will then go for a Zometa infusion soon. But instead of one infusion a year he is going to do 1 every 6 months with lower doses.
I would like to hear from some of you that have been using Arimidex for a few years or more. How has it been for you? I would appreciate it.
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jd - Thanks for the clarification0 -
I did 5 years of Arimidex. I did weight bearing exercise like crazy, ate/drank two serving of dairy every day, took calcium plus vitamin D supplements and ate a serving of prunes every day (prunes can actually BUILD bones). My bone density was in the normal range when I went it, and stayed there, although it had started to drop by the end. I have been off for almost 2 years now, and when I had a DEXA last spring, my bone density had started to go UP again. So, once you are done, you can get some of that bone mass back (if you keep working on it). I am still doing all the same things I did while on Arimidex because, of course, aging is another factor in bone loss. Genetics you can't do anything about, but doing the other things can minimize the effects of the genetics as much as possible.
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Thanks ruthbru!
Just curious was there ever consideration for you to stay on it longer than 5 years? And what are weight bearing exercises?
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I was put on tamoxifen first, and managed to stay on it for 6 months - however, the SE's with it (for me) were not doable. My fatigue was extreme which was difficult, but I had terrible trouble breathing when on it, and finally ended up with blood clots. All the way round, for me it was bad - femara/letrozole is much better. I have (so far, knock on wood) no bone issues at all.0 -
Thanks GG,
I remember you said that once before. Glad your doing well!
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garden - boy can I relate to your SEs with Tamoxifen. Unfortunately I'm still on it. Started out with Arimidex but because of osteoporosis my Onc switched me. I had no problems with Arimidex but gotta admit my bone density tests have drastically improved since I switched. 3 1/2 years out so 1 1/2 to go. I also have weight gain and trouble concentrating but I can live with that- I'll have to.
Diane
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jdboct, weight bearing exercises are any that pound your bones; walking, running, dancing, Zumba, many different exercise classes, going up & down the stairs, whatever that will impact the bones (so not biking or swimming). Also weight lifting (which doesn't have to be heavy weights, light weights are fine.
About the staying on Arimidex for longer than 5 years question: right now all the recommendations for more than 5 years are for ladies taking Tamoxifin (which makes sense to me because ladies taking it are usually pre-menopausal, and if they haven't hit menopause by the time their 5 years is up, their bodies will go back to making estrogen). At this point anyway, the standard of care for Als is 5 years. Any doctor prescribing it longer, is doing so on a hunch. Now, if someone was, for instance, Stage IIIC, then it would surely make sense to stay on, just in case it does help, as their recurrence risk is very high. But I think for everyone else, you would really have to weigh things out before jumping on that band wagon. Everyone's chance of recurrence takes a big drop at two years, and then again at 5.....so do the risks of other serious health problems from taking an Al longer than 5 years, outweigh the possible benefits? That is something each person has to answer for themselves. Both my oncologists (my first one moved away) said to be done at 5 years. I was node negative & only mildly estrogen positive, so I felt pretty happy to be able to do so without a lot of soul searching.
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Joe - nice to hear from you and Alice. Is the infusion you mentioned more chemo every 6 months?
Kay - welcome! You have come to a virtual club filled with knowledgeable and kind members.
Ruth - I have been MIA in part because I accidentaly destroyed my tablet a while back and I really, really, dislike typing on my phone. However, I read your post and wanted to ask you for help finding graphs that show the recurrence drop at year 2. I'm going to print it out and carry with me. I thought that drop started at 3.5 years, which feels awfully long to me, so I am happy to have been mistaken about this. I also owe you a PM and soon will write more.
Sorry I have read only the lasts 4-6 posts. I hope to be contributing more as soon as I get a new tablet.
Just a side note to share that I have a male friend on Taxol. He has completed cycle 3 and has experienced no hair loss, and I mean full head and full beard!
Hugs to all, Nisa
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It is important to clarify that pre-menopausal women's bodies are continuing to make estrogen while on Tamoxifen. The drug does not suppress estrogen - the reason it is given to pre-menopausal women is that they need continuing estrogen to maintain heart and bone health. Tamoxifen works by blocking the receptors on breast cells while allowing circulating estrogen to continue.
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Thank you for the clarification, SpecialK.
Nisa, I will look for those graphs but not until after the weekend. Family reunion coming up & I am just sneaking on the computer for a quick look (I must be doing something else in 7 minutes....yikes!). I hate typing on the phone too, the letters are too little and my fingers are too big!
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Nissa, sneaking back on the computer with this information I found from 2011 by the American Society of Clinical Oncology...." the risk of breast cancer recurrence and death (hazard rate) varies over time.....the hazard curve for breast cancer death peaks between 2 and 3 years after initial diagnosis and then declines sharply, suggesting that the biologic mechanisms responsible for early and late cancer-specific events are fundamentally different. Thus the early and late effects of adjuvant therapy may vary accordingly." This graph is pretty small, I will try to get a bigger one & insert it. It is comparing er negative & positive tumors and doesn't address stage.
*edited to add that I can't figure out how to make the graph bigger (and am out of time to fiddle with it!), but if you look closely you will see the initially highest line on the graph says 'ER negative' the middle line says 'All cases', and the lowest line in the beginning says 'ER positive'.
"The overall rate of breast cancer death for all cases peaks near 3% per year between the second and third years after initial breast cancer diagnosis and then declines to 1% to 2% per year by the sixth through eighth years. The annual hazard rates for women with ER-negative and ER-positive tumors demonstrate peaks of approximately 6.5% and 2% near the first through third years after initial breast cancer diagnosis, respectively (> three-fold difference). An ER-negative to ER-positive hazard rate cross-over occurs between the seventh and eighth years after breast cancer diagnosis, and then women with ER-negative tumors had a somewhat paradoxically lower rate of breast cancer death than those with ER-positive breast cancers."
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