TRIPLE POSITIVE GROUP
Comments
-
Morning ladies. I haven't hit 2 years NED yet and still think about recurrence often but each day it does get better.
I'm nervous though about LE because I had a potential basal cell on my affected arm biopsied a couple of days ago. I didn't have any choice that I could think of! Darn!
0 -
Arlene - I had a spot biopsied right next to my lumpectomy scar earlier this year. Derm said since it appeared after rads she wanted to check it (was ok). I didn't develop any LE. I do have super mild LE around my inner elbow.0
-
mcook i also did neoadjuvant chemo, also had a complete response. And yes, rads is controversial in our cases. I think this is because rads are indicated in certain cases because they can't be sure that chemo took care of everything. But in our case because we did chemo first they can see the chemo was effective. There are 2 schools of thought on this issue - some RO's believe that you should radiate based on PRE treatment pathology not post. Some believe that the decision to radiate should be based on your pathology AFTER chemo. I searched and searched and there is not enough information on people who have a complete response and the implications on radiation treatments. I asked my surgeon, even with a lumpectomy what exactly are they radiating if there was nothing (even microscopic) left after surgery, he said they weren't sure and that i was getting "standard of care". Bottom line there is not enough research to indicate whether or not rads is warranted in your case, like kltb04 said this is your first and best shot to do everything possible. However there are long term side effects to radiation so you will have to factor that in aswell. Its a tough one - I would get a second or even third opinion on this one0
-
I have been referred to the lymphedema clinic. I have barely noticeable puffiness on the inside of my elbow. I am hoping they can treat it and that I wont need to wear a sleeve for hours on end. Hoping....
Is very mild LE reversible does anyone know?
0 -
Soltantio I asked my BS why I wasn't getting chemo first given that I read they usually do for big tumors (over 5cm). (They thought mine was 7cm but only 6-6.5 with the DCIS). He said it wasn't big enough but I don't think that's the reason. From what I've noticed it seems the many of the women that get chemo first have node invasion. Also getting adjuvent chemo just started to be even more common in the last few years from what I can see.
But I really don't know all that is involved with making this decision.
0 -
Jackboo- That is EXACTLY where I have the puffiness. It comes and goes. I learned the LE massage and do that when it is noticeable and that helps. I am 1.5 years post rads ( developed LE during rads) and this is the main area that is affected.0
-
I was low risk too but my 10 node side got it and I didn't have rads.
- Your affected arm, hand, or breast feels full or heavy.
- Skin in your affected arm or body side feels tight or firm.
- Swelling in the affected body side (including breast, hand, fingers, elbow, shoulder, neck, breast, or chest area).
- Less movement or flexibility in your affected hand, fingers, wrist or arm.
Check this site out: linky
I noticed the tendons on my left arm didn't show up anymore. Here's the photo I sent my onc when she diagnosed me. Notice in the lower arms above the wrist. You can see the tendon in one arm but not the other. The arm on the right is also slightly swollen but since my right arm tends to be bigger than my right the almost look the same. linky
0 -
OK what is LVI ? I see this on my path report , it says LVI space invasion is seen. what does this mean?
0 -
ang - LVI means lymph-vascular invasion - basically means there is a connection between your lymphatic/vascular system and your tumor. It is indicative of its potential to travel elsewhere in the body, but seems to have a variety of opinions about importance amongst oncologists. In your case, because you are getting chemo anyway, it probably would not change anything.
0 -
Thanks Specialk, started to get real frustrated and confused about my path report.0
-
ang they seem to put more emphasis on node invasion than the do on LVI. They used to look at LVI more but found that node invasion is more of an indicator or likelihood to spread. I think it's because if you have node invasion you usually have LVI and LVI happens first. So it sounds to me they got this cancer out of you just before it was going to make its way to your nodes. Check with your onc but that's how I understand it.0
-
lago , thanks this must be why I had to have chemo0
-
ang - also because you are Her2+ and Herceptin works better with chemo, and it is the current standard of care for
Her2+ patients. Giving Herceptin without chemo is the exception to the rule.0 -
Thanks ladies - that helps a lot to know I am not the only one facing that decision. Yep I also keep hearing stand of care. Well I wish there was more information and stats on this. I was giving one study by my rads doc and it was a study about reoccurrance w rad or wo. But in that group there was 19 women all triple positive half did rads and half did not and none had reoccurence with in their study period which I believe was 10 years. It is not a huge population but it does make me really question my decision. I have a week to decide and in my mind I know that I will probably continue treatment with rads but I was hoping:( my oco actually was the one that said I should have a consult w rads but was an option for me now. So confusing and frustrating but I know I will get through this too! Thank you again for sharing
0 -
on the topic of neoadjuvant treatment when i joined the boards i was hard pressed to find very many who were treated this way other than later stage 3's. It seems to be much more common even in the year since i was diagnosed. The "criteria" is very doctor dependant from what i have learned. At the top cancer center (top 5 in North America) where i am having my upcoming surgery the BS was actually surprised that i rec'd neo chemo because the tumor was only 2cm and no (visible upon imaging) nodes, they said their criteria was any tumor over 5cm. My previous BS and MO were involved in global neo adjuvant trials for her2 and triple negative BC so im sure they had a bias towards neo adjuvant. I believe the larger centers like MD Anderson start all triple negs and her2 over 2cm on chemo first. The thinking is that once a tumor (statically speaking) grows to over 2 cm, even without node involvement, there is a greater chance that it has spread. This is the way it was explained to me.
0 -
mcook - Here is a link to the NCCN guidelines for radiotherapy after mastectomy, as well as the page for neo-chemo for triple pos. There does not seem to be an obvious reference for the rads after neo-chemo question, but thought you might find this helpful when discussion turns to standard of care.
http://www.nccn.org/patients/patient_guidelines/breast/index.html#/68/
http://www.nccn.org/patients/patient_guidelines/breast/index.html#/80/
0 -
Sol: My onc does routine CTC blood tests. Mine is still at zero and sure hope it remains that way. Some on here don't believe in CTC testing but I'll take what I can get and feel good about it.
0 -
Hi all! Had all my appts. I decided to go with more lymph node removal instead of rads. Info in next Tuesday morning, stay vernier and then back one to St Aug if all goes well. It is what it is. Hopefully under 14-15 nodes removed, minus the 2 SN's already taken with my BMX. And then wait on the path report. I am feeling better since my BMX and tram flap. Standing up straight now. Looks like in another 5-6 months I can finish up my reconstruction. A nip and tuck here and there.
Imagine I will see my oncologist soon. So, ready to move forward. Also, I asked for the oncoltype dx test to be done and my surgeon said that's up to the pathologist. ??? Is this true? Also, does all chemo cause loss of hair?0 -
Regarding neoadjuvant chemo - I was told my my BS at our first meeting that the MO she was recommending uses neo chemo for everything but the smallest tumors- both to see what works and to give the option for lumpectomy. Mine was 3 cm, went to 1.6 measured by u/s and is no longer palpable at all. Lump was presented as an option to me but I am choosing BMX for a variety of reasons.
0 -
Stand up to cancer fundraiser tonight...all networks.
0 -
Thanks soltantio. I will check the cold cap info. Also, I already heard about icing my nails. Oh fun!
0 -
Ms Tori,
Did they rule out rads completely? What if your removed nodes come back positive? (Hope they don't!) In that instance, according to the literature, they're supposed to recommend rads. Which also goes to MCCOOKS question, though indirectly.
Often times you can extrapolate information about your specific situation with the trials/studies that have been done that show results, even though every single aspect is not the same. For instance, there may not be any cancer left in your nodes. But you don't know for sure. The cancer practically skipped the two nodes closest to my tumor, the nodes with the most cancer were further away.
So what we do know is that women who have 1 or more positive nodes benefit from rads. That is AFTER those nodes are removed. So if I were in your situation, I'd weigh chemo taking out your cancer, kind of like a surgeon taking out positive nodes. They're gone....but the latest studies show if any nodes are positive that rads increases survival/reduces recurrence by a significant amount (even though the infected nodes are removed).
Does that make sense? Not sure if I explained it well.
0 -
Stand up to cancer is on one year ago I and my daughter watched this last year who knew I would be one in less then a year latter.
0 -
Miss Tori: I think most of the chemos for breast cancer do cause hair loss. I did the cold caps and didn't lose my hair...a lot of work but well worth it! I lost a lot but never bald so I'm happy and my hubby was my savior as he was right by my side changing out caps every 15 or so minutes. I used the ElastoGels versus the Penguins. I finished chemo June 2011.
As Sol said, ice those fingers/toes and suck on the ice during the taxotere AND TONS of water. I drank a minumum of 100 ounces a day.
Best wishes to you!
0 -
Arlene - did you use the caps during the carboplatin? How many caps did you use?0
-
Rads question. RO mentioned that my rads would be right side only (cancer side) but he didn't feel like it was necessary to radiate the axilla because "the surgery had addressed that" (the snb). Should I be concerned about that??
0 -
hello ladies, I think you can help me........
my HER is low, no negative, and I am in a clinical trial in Herceptin arm ...
I have finish my chemo last week ( 12 weekly taxol/herceptin) and I'll continue with herceptin alone. my EF drops from 58 to 49 by MUGA test. I have got the next treatment but I'll have another MUGA in 2 weeks. it is possible for EF to go up, 50 and +, some times after a period? are you doing something special ( exercise, cardio, jog etc) to maintain your EF% up ?
thank you ladies
I have read your posts here and it is an effective help for me
thanks
0 -
Ashley,I am in the same position, although pi chemo is different..I went from 59% when I started, to 57% when I was in chemo, to 48% on Herceptin alone, just last week. So I am actually halfway done. But its looking like my onc is saying.I am actually.done and not doing any more you will have to ask your onc what he thinks. Much love
0 -
Omaz: I actually started the caps during premeds and continued through all and for several hours after. Since I owned mine, I also used them in between treatments...I had to drive 90 minutes home and we stopped every 20 minutes on the way home and changed my caps....over the mountain passes (was in NV then).
BTW, thanks for your comment about your biopsy. Sure made me feel better.
Arlene
0 -
Tonlee- A lot to take in. I think I understand- that rads is the best way to reduce recurrence and irradicate the cancer? My surgeon did explain that if more nodes came back positive it will mean rads. My 1 node came back with 0.16 cm. im praying no more are positive. And I will take it from there.
?? Not sure if that's what you meant? I mean, they have to check take more nodes, and check them. Or, I realize I could just have rads instead. But willing to have faith no more positive nods and have no rads and save reconstructed site.
I will def cold cap it and ice! Thanks ladies. :-)0
