TRIPLE POSITIVE GROUP
Comments
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nmoss - yay! Officially jealous on the Paris/London trip!
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Vicki yes I understand your are IDC. My point is even with DCIS this shouldn't be dismissed. Get the second opinion. You'll sleep better.0
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VickiLind61- Ask your MO about it. I found that sometimes the doc's think you are overwhelmed in outlining the entire treatment plan, sort of like the ton of bricks idea. I finally got frustrated with this and ask what the entire tx plan was to be. Granted, my chemo brain needed to have reminders, and had some rapid changes, but none the less it helped. My BS was the one that sent me to the RO when he was comfortable. It may be that she has planned it all along. You have time.
Kayb- I would venture a guess that no more nodes will be taken during the BMX as your nodes were neg, but I am not a doc. If you wonder, ask! It will ease your mind.
Congrats to all for reaching your milestones! Whether you are starting, ending, deporting or spending time with NED, you've come so far!
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nmoss - congrats on your "deportation" lol and what a fabulous trip!
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Vicki, I agree that a second opinion will help you sleep better. When I was diagnosed last summer, I went straight to a major center and didn't get a second opinion. I was so scared & didn't want to waste one more day waiting for appointments. Luckily, im very confident in the treatment I got, but I did seek a second opinion after treatment ended on some questions I still had. I felt so much better getting to run thru my list of questions with a second MO. Good luck.
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You ladies are so wonderful. I will make some calls starting next week. I feel like a broken record with my stupid case, but I am glad you all think I'm not insane. (love that song, btw) Feeling better this late in the afternoon but my tummy is still a little tender. Boring dinner, me thinks. Then research for other MO's and get in touch with my insurance to make sure they will cover an appt this late in the game.
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I agree with Moni. My Onc didn't mention Rads to me at all. I took the initiative to seek one out. I think they like to wait until you are done with chemo and then break it to you...or seems so anyway.
Vicki,
Right now, the way I understand standard tx, you should get Herceptin because you are 1 cm Her2+...you should receive an AI or Tamox for at least 5 years for the ER+, and for the 2 positive nodes you should receive rads to the axilla. Make an appointment with an RO NOT an MO right away, because as stated above they may have to work with your plastic surgeon before you begin rads. And frankly, an RO knows rads and the benefits much better than most MOs.
I have a TE and post-poned rads for almost two months so I could get my fills in. (I had a healing issue during chemo and didn't heal until after chemo.) Anyway, if you are healed up, it probably won't take two months....but I actually received 2 fills DURING rads. (Though most ROs won't do this because it requires them to remap your whole procedure.) My RO was awesome and did the extra work. Also, 6 months after rads I was expanded 3 more times. So far so good. I go for exchange in July....barring any problems!
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Vicki I didn't have rads but I didn't know that till after I started chemo and saw the RO. At my treatment center they don't let you have expansions during chemo or rads. They don't want them fully expanded either. I managed to get 3 expansions before chemo. If I needed rads I don't know if they would have made my PS take some out but I doubt it because he expanded so slowly. There are studies out there that do say expanding fully before rads can have better results but I don't know much about the studies. Also have read that fat transfer also helps reduce capsular contraction which is more common with rads than without but I think that might be more of an issue if the breast is radiated.
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I think rads is standard for lumpectomy, to help prevent recurrence in that breast, not for mastectomy.
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I didn't realize rads was recommended for axilla with postive nodes and mastectomy. Makes sense, though, to kill micro cancer cells that may be in that part of the lymphatic system. Information is power!
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hi ladies
just catching up on the posts -
kay/moni/dance - just wanted to add some info about cancer cell death in neoadjuvant chemo. After my path report came back from surgery i asked the BS how they new for sure that they got the right area (even though they placed a clip prior to chemo) he said because the can identify a very definite "tumor bed" where the tumor was. In my case the tumor bed at pathology measured 2cm - pretty much what the mri said. I had a complete response aswell. As for my lymph nodes, the path report said "some scarring" - this could mean that they had cancer b4 chemo, which is why i opted to radiate the axilla
tonlee helped me make that decision - i also had rads because of LVI (this is also controversial)
fluff - thanks for the info on effexor - i swear there is a puddle at my feet most days
vicki - i second everyone else on getting a second opinion -I had several even after i started treatment, it may help you make decisions or just reinforce what the other is recommending
congrats on those being deported!
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Congrats NMoss. We started this journey together. Your trip sounds so exciting. I still have my port but I get deported in a few weeks...I'm waiting until after my next mammo/ultrasound...it is a bit scary to me to have it removed and not sure why.
Great to have everyone here to "talk" to because my hubby is at a point where he doesn't want to hear anything about this bc any longer and I guess I get it. He has no clue about my final Herceptins (that were stopped) or my port being removed....I just keep it all to myself and I'm good with that as I understand it has been tough on him...he was there with me through the worst.
Congrats again NMOSS!
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Congratulations Nmoss!!! I felt the some way after being deported. That was over a month ago and I feel so much better having it out now. It has made me put my cancer in the backgroung a "little" more and I feel not so much like a cancer-patient now. Nice trip too!!!! Jealous
!!!! We are celebrating my one year since chemo ended with four other families and heading to Punta Cana for some fun and sun in 3 weeks!!! can't wait!!!! No wig, no port, no chemo, I am free!!! yahoo!!!specialk--congrats on being in the trial!!! that makes two right? You and Fluff. That is so exciting
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forgot to add.....again
..... it has been 6 weeks since last herceptin and the hair on my legs and underarms has taken off. hopefully on my head too, but haven't noticed. So I can definitely say that Herceptin has slowed down my hairgrowth alot!!! I could go at least a week without shaving legs and underarms before, now it is back to normal. 0 -
Gosh, I just realized that my one year of chemo ending was June 13. I can't believe I forgot it. That must be a good sign, although, Herceptin just ended March 30, and I am still arguing for a PET scan. lol
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Oh, and my leg with the vaccine injections is much itchier this time. I used some cream for the first time and took a Claratin. I was going to take a hydroxyzine, but I have to drive home tomorrow and I would be so sleepy, I might not make it.
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Thanks ladies! I ate my way in pastry, aweful then I had blood work needless to say glucose was a tad on the high side:) but it sure did taste good.
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Doudoulong- My tumor had 2 different subsets one was her 2 neg and the other was her 2 positive- I received ACx4 and TH x 12 and will receive herceptin every 3 weeks for 1 year. Good Luck!
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Nancy,
Until about a year ago, there wasn't any clear, long term research on radiating 1-3 positive lymphs...each RO made his own call. Now there is, and it is huge. Upwards of 30% if I remember correctly (long term) reduction in recurrence.
My Cancer Center was ahead of the game on that. They ALWAYS radiated 1-3 nodes. I actually chose a MX to AVOID rads...but it was not to be. I had close margins, positive nodes, and LVI. DANG IT!
I read the reports on the ongoing research in 2010, (didn't come out until 2011) and refused axilla dissection based on it. Now it is fairly standard care to radiate the nodes if any are positive instead of ripping them out (barring gross disease to the nodes).
What confuses a lot of people (it did me until I looked into it more) was the whole staging of the actual node. The technology to actually see how many cancer cells are in the node came loooong after the staging system. Before staining and SNB they essentially looked at the node under the microscope and declared it cancer or clear.
Now they can actually count the # of cancer cells present in the node! While that is awesome (to me anyway), it throws the whole old staging system into literal chaos. It means one Onc will stage me a 3 and others a 2, depending on whether they trust the new technology or not.
For instance, before this technology, they might look at a node and label it clear while it was actually cancerous. Meaning, the cancer was in such a small amount they couldn't see it. So that might give a stage 3 woman now, an actual stage 2 or 1 diagnosis then. Which may not seem like a big deal since the tx is essentially the same (but without rads), with budgets and such, a lot of cancer centers won't order certain scans for a stage 2er but will for stage 3.
With technology now, nodes can be clear, have isolated tumor cells (ITCs), micromets, or macromets. I can't remember the exact number off hand of what constitutes macro from micro....
The problem NOW, and what is often misunderstood, is these node classifications are used strictly for staging. According to my RO and my second and third opinions, they are NOT and should never be used to omit radiation treatments.
My RO said, and the things I've read over the last few years backs it up pretty well....cancer is cancer. You can't have just a "little bit" of cancer. If it is in the node, even a single cell (and especially HER2+ because it likes to travel) then an RO should consider it "hot" (even tho the staging process says it is not hot, it is clear).
It has officially "traveled" from the primary tumor site and needs tx. The only exception to this might be 1 hot node out of 4 taken that is classified as ITC....but he would still recommends rads. And now the research backs up exactly that.
I just read an article from UCLA that says some women's cancer GROWS with radiation. The attack actually causes a production of stem cells. Obviously this is not the case for all women who receive rads....but they're working on targeting those cancer stem cells first....but that's another topic.
You can read about it here if interested....
http://newsroom.ucla.edu/portal/ucla/radiation-treatments-generate-229002.aspx
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tonlee my cancer center always radiates even if you only have 1 positive node, they are super conservative. I got radiated with LVI only and no positive nodes so it does vary widely from center to center
question for all those who had RADS - are we supposed to avoid all sun or just the radiated area? i am not a big sun person but its tough with the kids home for the summer, swimming etc. I was going to call my RO but thought i would check with my very knowledgeable ladies first!
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Hi
My memories of surgery time are a little hazy. On the day I was dx I had a mammo, us and biopsies. The us suggested node negative in axilla but I had one intra mammo node. It is this node that was causing me pain and the reason I went for a check up.
My surgeon offered me a lump with rads. He said I would need full auxiliary clearance as this was the only way to determine the status of my nodes. I was very anxious to have surgery and I went with this.
However I have now heard of conflicting stories. Forgive my ignorance as I am not knowledgable on this subject. One friend who was 34 and TN had a dye injected around her tumour to see if cancer was present in the closest nodes. Another Her 2 friend felt a lump under her arm. She had mx, TCH, rads to chest AND axilla. I think they wanted to throw the lot at her as it was a large lump in her armpit (I'm presuming this was fully encapsulated node)
I probably should have asked more questions as I don't know if I had LVIV, micro mets etc and maybe I could have avoided full aux dissection. However, I think with my young age and Her 2 status he would still have advised same path. Comments welcome!
Liz0 -
Liz,
Unless I'm missing something...a SNB would have worked for you..instead of a full axilla dissection.
Like I mentioned above...some surgeons are slow on changing their practice and I have met a few around here who still recommend axilla dissection for me...after all my tx!
It is what it is. You did the best with the information you had at the time.
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Hi Tonlee
Yes Im sure your right. Just another example of new developments being slow to catch on here. Do you know if the risk of LE decreases in time or is it always the same?
Also what are your thoughts on the Predict breast cancer tool developed here in Uk?
Hope you are well.
Liz
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You ladies are such a wealth of information. I promise I will make some calls TODAY.
My whole "stage" thing is even weird; when I follow guidelines in books or on BC.org, I come up with stage 2 but my MO, again, says the nodes barely count and puts me at 1b. So, second opinion it is.
Feeling so much better today; the d-train has left the station. My toungue is feeling weird, but no taste issues. First tx was a week ago today and I still think I have been very lucky in terms of SE's. No sign of hairloss yet; we will see.
Liz, hope you are not having to battle lymphedema?
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Liz,
There are several long term studies out on LE with axilla dissection. Unfortunately as time passes the incident of it seems to increase.
This compares Axilla to SNB caused LE 5 years out. Axilla is around 16% of women have LE and SNB about 5%.
http://jco.ascopubs.org/content/26/32/5213.short
That is a conservative # though. There are studies that show 28% of women just 18 months out have LE.
http://www.americanjournalofsurgery.com/article/S0002-9610(03)00438-0/abstract
And this shows @ 38% of women with axilla dissection have LE 18 months out.
http://jco.ascopubs.org/content/26/21/3536.short
There are factors to consider....women who have axilla dissection AND rads have a much higher rate of LE than women who just have axilla. And women like me who had SNB and rads have a higher rate (around 8%) of getting LE.
Unfortunately time progression isn't positive....this study shows almost HALF of women with axilla dissection have some form of LE 20 years out.
There is GOBS of information about LE out...lots of studies.
Keep in mind that half of women *may* get LE, but HALF don't. And some of the ones that do have very minor cases, it is not instantly elephant arm. There are plenty of women here who seem to manage it well. I know I wouldn't manage it at all...I'm just not built to go easy on my arms...right now I have a HUGE spider bite on my MX side from working outside in the garden.as well as several fairly long scratches...and I am right handed....maybe I'll still get it....maybe I won't. But if I do it won't be because I let them rip out my lymphs!
And I wouldn't have made an informed decision about it on my own (so don't feel bad). My aunt in Texas had a MX a month before me...she had calcifications and they took something like 30 nodes! She had Le before leaving the hospital! And now her arm is so big she can't use it to write on the chalkboard at school (because like me she didn't manage it). She got me researching LE...She is the reason....if not for that....like I said, we all make the best decision with the info we're given...or find.
I don't know anything about the Predict tool you mentioned. As a general rule I don't put much faith in stuff like that. Or frankly in prognosis' either.
Hope that helps.
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Tonlee
Great post. I'm out at the moment. Will respond in detail shortly.
Liz x0 -
Hi tonlee,
I was doing so well with my exercise routine ...walking,doing a bit of weight training and although I didn't get my weight under 130.....I' m 5'6"...I was feeling good until.....RADS..
I won't do anymore complaining about my experience but I am just starting my exercise regimen. again hoping it will also help me with a new SE that I was hoping all you wise and wonderful friends could advise me about.
Ever since DX I've been super sensitive and very emotional. I would regularly find myself teary eyed as I fought my way through my fears, raw emotions and awkward situations both real and imagined. I thought I had it under control but about rad # 27 it seemed to get worse as my rads fatigue suddenly set in . I actually cried during my last rad and had to redo my tomography scan because I was sobbing so hard!
I know many of you have had these emotional jags . I am hoping that a renewed exercise program and increasing energy will help. I have changed my lifelong aversion to taking meds. I'm not ready to ask or meds yet but want to prepare myself for the discussion.
I would really appreciate all of your advice!
I would appreciate your0 -
On the whole axilla and rads thing...
I work for a university and am a clinical researcher so am driven by stats. In that week between diagnosis and surgery I did a lot of research and found the whole axilla clearance vs no clearance thing. I had no clinical evidence of cancer in my nodes but my BS is still very much into aggressive treatment and will do a full clearance for women with ANY signs of cancer in the sentinal node at all. I managed in that week to get a good understanding of it and went into the surgery telling my BS that even if there was cancer in my SN I would not give permission for the ALND.
Woke up from surgery to find that even though there was a chain of 3 nodes showing in my pre-surgery scan (1 large and 2 small) she only took out the first one in the chain (the large one) and sent it off to the lab. Got the pathology back and found that the 1 large node was macrometastatic, with extracapsular extension and LVI. I am angry still that she didn't take the other 2 nodes in the chain but that can't be changed now...
BS offered to get me back into surgery the next day to do the whole ALND but I refused as we could all see that the next 2 nodes were small like nodes should be and taking out the rest of my nodes at that point seemed a bit useless since the cancer had potentially bolted out of there anyway. BS wasn't happy but also begrudingly agreed that the latest research on ALND, even though only performed on women with small nodal mets, could possibly be statistically extrapolated to women in my position.
What we did at that point was a full body CT scan with special emphasis on the axilla and regional nodes - and there was no evidence of any more gross nodal involvement or any mets including brain (yay, yay, yay) which made myself and my team very very happy and I could see the BS and MO were much more relaxed after that.
I went on to the chemo (3 x FEC and 10 x Taxol with Herceptin) and am now due to start rads next Tuesday to full breast and axilla. During my chemo I had some ongoing upper breast pain that could have been level I/II nodes so I had an ultrasound which found nothing so there was another sigh of relief from us all.
For my rads I have again comfortably stepped away from the "norm" and have refused supraclavicular rads based on my research into the benefits/risks. On a personal basis I am not prepared to take the higher risk of LE and risk of other long term serious SEs from irradiating that area. It has made it slightly more difficult for the RO to do the planning but she is OK with it and understood my decision was made based on a personal risk/benefit analysis of the research papers. I felt much more at peace with this decision after my husband asked the RO what treatment would be used if I am diagnosed later with cancer spread into my supraclavicular nodes - and the answer was "we would radiate them" ie: my theory of "don't do it unless you have to" is OK!
All the way along I have dealt with highly trained and intelligent women (BS, MO, RO) who have been very willing to talk research and risks with me. All 3 of them have understood my reasoning and have NOT argued that my evaluations were incorrect and I'm sure they would have argued if they thought I was terribly wrong.
I have STRUGGLED with the rads as a whole. REALLY struggled because I have an adolescent history that included a large number of diagnostic chest x-rays which is probably why I got breast cancer to start with (although I did not know this until very recently). This means that my personal risks from rads fall outside the published population risks and no-one can tell me what my actual risk levels will be for the expected SEs and potential long-term SEs.
The stats on this one are so even for risk/benefit that the decision to do them at all (or just go straight to a BMX) has been very hard and could have gone either way. I have spent weeks and weeks reading all I can (and I do have academic access to everything available) to try and figure out what to do. In the end, I have to accept that despite my personal fears the statistical evidence is very strong FOR rads and so I have finally fallen on the side of doing them. I feel at peace with all of my previous decisions outside of the standard track but this one I am not sure I will ever feel at peace with. So next Tuesday I will turn up and lie there for my full breast and axilla rads and it will feel like the biggest gamble I've ever taken.
Research papers generally give you statistical information on a population level. In this era of personalised medicine many doctors still treat all their patients as if they are the "population". I have made my doctors step outside that method and treat me on a personalised basis. This has meant extra "thinking" on their parts and extra monitoring by them of me eg: the additional ultrasound during chemo. But ultimately it means that I am less likely to have been overtreated.
Hope this all makes sense. It really looks like Tonlee and I are very similar in our opinions and I wanted to show you that you have, within current knowledge, lots of options that you may not have realised you have in terms of obtaining personalised treatment for yourself. But to do this involves having to understand the numbers and you need doctors who are willing to discuss them with you. One day we will hopefully be able to have truely personalised medicine but our medical services are so overloaded I'm not sure how real that will be.
Jenn
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jennt, O M G!!! That is unbelievable; why oh WHY did the BS not take more nodes? Do not understand that.
Hope you are keeping your doc's on track!
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Wow Jenn. Great explanation. So glad there are Docs out there willing to work with a patient. I pretty much had to armour up and prepare for battle before each session...but the military isn't exactly well known for its democracy...
Ashla,
I agree with Kay with some added comments. Of course the LAST thing you feel like doing when sad/depressed is exercising. So don't beat yourself up if you're not where you were...just take a walk, do small things to start. If you can.
About the sadness...I have to be honest, I'm pretty anti..anti-depressant. I think in a lot of cases there are underlying issues and those should all be ruled out first.
First, hormones are powerful and BC messes with them big time. I know the women in my family who have been through menopause have said they were an emotional wreck...one minute happy, the next tears. Said they felt like they were losing their minds. So that helps carry me through the menopause blues because I know it's normal. I think we can all expect some emotional upheaval, even severe at times, from the hormonal imbalance.
And just so you know....Rads made me blue as well at the end. I think it takes so much out of us, that our body has no way to cope without shutting down. Depression actually burns less calories. Did you know that? People move slower, sleep longer, etc. It may be your body's way of dealing with the rads. I will tell you a week after rads I was WELL on my way back to sassy
Hang in there and eat lots of protein! 100 grams a day if you can.Second, thyroid. I hate to beat this same drum...but it is vital to have your levels checked. Anything higher than a 3 TSH should be treated. Those are the American Endo. recommendations, but some Docs won't treat between 3 and 8! Which means again, your hormones are thrown out of wack and the blues come on.
Third, this is strictly my opinion (obviously) but if you weren't susceptible to depression BEFORE BC, then it is likely you will "even" out once rads is done and any lingering underlying med issues ruled out. If you are sad...FEEL SAD. It's ok.
I've read your posts over time. I think you will bounce back in a few weeks. If not make an appt for some blood work, and then THEN you will be able to make a decision with ALL the information. Right now, at the tail end of rads is NOT the time to think something is wrong because your sad. It is normal.
(And don't listen to women who said rads was a breeze. They likely didn't receive the dose you are. And so what if they did? Rads totally kicked my butt, while chemo barely registered on the bad scale. We're all different.)
Hope this helps.
Much love.
Tonya
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