TRIPLE POSITIVE GROUP
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Wow! I go to bed and actually sleep 8 hours, and I've got a couple pages to catch up on! Whew! I actually slept in today! Woohoo!
Sol- I meant cysts and density as risk factors. My iPad likes to correct and make up its own words! I don't always catch it.
LeeA- I had my BMX on July 30th. They removed 2 sentinel nodes. During surgery, they were clear. On the final path report, I sentinel node came back with 0.16 micromets within the node. There is a level below micromets, and I cannot remember what it's called, but my BS said if it had less, than no further surgery or radiation needed. But, since it was micromets, I would either need ALND, or rads. I went back into Sept 11th (yeah, that should have been a sign). Had ALND because I didn't want rads, and my surgeon said only 12-15 nodes more with be taken. HA! They can't predict that. Everyone is different, and the nodes are embedded in the fat in the axilla. And still, it doesn't matter, any node removal increases risks of LE. He took Level 1 & 2 nodes. I had 25 in all removed. I remember the suggestions here, and should have listened. I'm pretty pig headed and now, am learning to take my time, research and listen. It affects the rest of your life. All my other nodes were negative. Meh! If I had to do it over, I would say no more nodes. They said my tumor was 1.3 and that I had another area next to it with DCIS. And numerous microcalcifications. Hope this helps.0 -
LeeA I have LE in the cancer side (left) where 10 nodes were taken. The right side showed several suspicous areas that would have to be biopsied every year so my BS recommended BMX… which is what I wanted to do in the first place. We didn't have it biopsied because that would have taken more time as it was it had been 2 months since my Mammo and no surgery. One spot ended up being LCIS. Has we known it was LCIS I woudn't have had the SNB (4 nodes) on the left. That's considered pre-cancerous but doesn't always turn invasive and can go away on it's own.
So yes all my nodes where negative.
I too though I would hate wear a sleeve all the time but I actually got used to it. I mean I don't love it but not so bad. I still think you should get a 2nd opinion before you let anyone rip out any more nodes. Unless you don't want rads. If you don't want rads then you should have those nodes removed. Also talk with a Rad onc on this matter.
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Lago - what brand sleeve do you have?
LeeA - any disruption to the lymph system, surger, SLND, rads.... can cause LE, I'm not sure of the stats for risk following SLND compared to rads w/o SLND. I just had it all, had an even higher increased risk for LE. None of the scans are 100%, they are just good indicators, the more the have the better they know what to expect when they get in there, but they aren't perfect.
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leeA - sorry, not understanding why they can't radiate the axilla only even when you had a msx. Can't they target the axilla only??? i tried reading through all the posts so i apologize if i missed something that already explained this. Honestly, im with you, i think i would want to get into chemo asap instead of another surgery. My cancer ctr is very aggressive about getting her2's into chemo as quickly as possible. I know in many instances they do a lump even when the patient choses a msx (if this can be done as first line of treatment) because they want the quickest recovery time so they can get them into chemo. My friend did this, finished chemo and had her double.
we all second guess our decisions, trust me with all this pain i am having from surgery i often wonder if i should have just kept my breasts. Then my husband reminds me that i was nearly hyperventilating at my last MRI. I think when we have a choice of the type of surgery our personality is the strongest factor in making a decision. I don't trust screening and i don't trust my body. But thats just me, im a total worry wart to the point that i make myself sick, so i have to keep reminding myself that once i get over this hump i will be at peace with this decision
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Linda I have Mediven style Medi95. If you chose Mediven be sure you get the Medi 95 because the weave is smaller and both more attractive and less noticeable. I don't have the silicone in the band because it irritates me and frankly I don't need it. I do find that this brand keeps its compression.
Many other like Jobst. It comes in beige black and brown.Lymphedivas I believe has 2 "skin" color type sleeves as well as some funky styles. I find the compression doesn't seem as tight but maybe some day when I get a job I'll get one of these for fun. The fabric isn't as thick so it might be good for summer when it's really hot.
If your insurance doesn't cover this is a good site to purchase: http://www.brightlifedirect.com My LE PT recommended it but I found out my mother who has had LE in her legs for decades also purchases there because medicare doesn't pay for LE garments. She stocks up when they are having a sale.
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Chemo start is recommended to start within 3-8 weeks of surgery. I started 5 weeks after my surgery.
Edited to correct time error
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My chemo was delayed for more than a month as I had my TE removed 6 weeks after BMX because of infection. So I started almost 9 weeks after surgery. (Had to wait til I was done with the abx. ) much love
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I'm still in the hospital. You can probably tell by my piss poor iPad typing. I asked the oncogist on eep everyone call from my practice today why I wasn't getting nuelastin and she said I still could. They want to see if I can rebound on my own. Fever is down to 99!!!! And I am finally feeling better. Honest reason why he plans to change my chemo is because I begged :-) I'll keep everyone posted. I'm keeping food and water down now!
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pbrain - oh so glad to hear you are improving. You sure have had a tough first round!
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No when they opened me up it was 1/2cm smaller. It was my neighbor where they found more.
I too was how the hell did they miss a 6.5cm in a barely 34B breast but my tissue was dense and in the posterior region… but when my BS looked at my films he know right away I had cancer. He hadn't even looked at the US because he couldn't open the disk.
But you have to remember at least in my case because I had dense breast tissue they always cover themselves on the report saying that it is difficult to read and the results may not be accurate.
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Hey all!
How long did you stay swollen after your bmx?
I got my drains out on day 8????
I am so so so swollen. I am not quite 2 weeks out yet.
Dr said I would get more swollen...he was right.0 -
Oh and on the topic of tumor size...my ultrasound showed 1.8 cm
My MRI 2.1cm
Pet 2.4 cm
I stuck with the 2.1
(All tests were run within one week)
But I like the idea that biopsies make them swell...then I could claim 1.8
My mo said...not likely:(0 -
I so appreciate the conversation about the effectiveness, necessity and SE's of ALND. One of the reasons I love this board is that there are so many informed women here. I have bookmarked the studies and plan to talk to my BS or find one that will listen. Ever since my diangosis 2 months ago I have felt that the recommended treatment of Chemo, ALND and rads was "overkill" for my situation - one positive node taken out and 2 more show up on the PET.
In my gut I just feel like it is more than I am comfortable doing. I felt the same way in 2000 after my BMX and they wanted me to do 5 years of tamoxofin. I declined. Now they agree that I made the right decision and it would not have made a difference. I think sometimes we know our bodies better than the doctors do. We also know what SE's and risks we are willing or not willing to live with.
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Sol- yes, I am feeling much better mood wise. It's so nice to feel good. But dreading this Fridays next round. But glad I will be halfway done. I'm all over the map! Lol!
I second guess my choice all time. Even if I should have done lumpectomy instead. I mean they were hoping I would choose bmx, but I still had a choice. But what's done is done and I will move forward. I think most of us go through second guessing about something in this at one point. That's where this board comes in and is so great to put it out there and get different viewpoints. I wish I had found this board sooner. Where in California is airbnb? I've lived in Ramona and Escondido in southern Cali and then in the military, I was stationed in northern Cali in Rancho Cordova near Sacramento. I loved it all!0 -
kayb -
My micromet is 1mm.
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MsTori - I think soltantio might have been referring to this service:
http://en.wikipedia.org/wiki/Airbnb
Airbnb is an online service that matches people seeking vacation rentals and other short-term accommodations with hosts who have an unused space to rent, generally private parties that are not professional hoteliers.
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IsThisForReal - thanks again for that link to the other thread about micromets. I pm'd one of the posters on the thread and she replied with a very detailed account of her own situation.
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LeeA I sent you a PM earlier
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Thanks, lago - I was just replying and came back to the thread and saw your post.
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These Onc. and Drs. amaze me, I realize all the decisions u have made and maybe u'r second guessing u'r self and that has to be a terrible feeling. but u really know u gals are so informed tht u are doing what u need to for u'rself--very well I might add. I told u my onc. felt a lump on my rib last week she doesn't like--and I feel like 10 all over there and yet one she said she was very concerned about and had me feel it. ???? It felt like nothing but a lump to me, like all the rest--That's why they amaze me, they can zero in on something that feels the same to me. I need a bone scan anyway so it's not a big deal. And now with all this computer stuff they called me the same day for an app't for tom.--uea right I remade it for next week.
Pbrain I'm so glad u'r feeling a bit better, it's nice to hear u on the board--I hope u'r home soon.
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LeeA- lol! I didn't know, I was thinking like a ditz....where the heck is that? Haha! That sounds like a a good idea. Cut down on travel and enjoy a new area.
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MsTori - You weren't thinking like a ditz - or if you were, I was, too! I had to look to make sure because I thought there might be a really cool area of LA that I had yet to find - airbnb - like Bel Air North of Beverly Hills or some such arconym!
Once I plugged in airbnb into Google I remembered looking at their site a few years ago when we were planning a trip to Kauai.
As an aside, I've read a few horror stories about house trading...
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LeeA- haha! I lived in Cali most of my life. Funny, initially I was trying to link it to Bel Air too! Two great minds!
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MsTori -
Indeed!
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kayb -
I'm hanging on to every "good thing" I can find in all this!
The path report shows no evidence of lymphatic invasion so I'm calling that good news as well.
(I used to always think of myself as a glass half empty type but through this "experience", thanks for that Jenn, I feel more like a glass half full type)
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Something I just read. Perhaps someone else linked to this and I missed it in the blur of yesterday and now today.
Axillary lymph node dissection (ALND) may be safely omitted in patients with early stage breast cancer and sentinel lymph node (SLN) micrometastases, according to a study published recently by Igor Langer and colleagues (Department of Surgery, University Hospital Lausanne, Lausanne, Switzerland) in Annals of Surgical Oncology (2009 Sep 4. [Epub ahead of print]. PMID: 19760047).The question of whether to perform ALND has been controversial since the use of SLN mapping and sensitive immunohistochemical tests for identifying micrometastases (and isolated tumor cells) became widespread. “Seeing metastases larger than 2 mm, now that matters.
With micrometastases (clusters of cancer cells larger than 0.2 mm but not larger than 2 mm) or isolated tumor cells (individual cells or cell clusters no larger than 0.2 mm), the prognosis is as if the patient were node-negative. That’s a very important message,” explains Victor Vogel, MD,
MHS. “You don’t have to do extensive axillary dissections in those patients. Removing micromets [micrometastases] surgically does not add to the systemic treatment of patients with breast cancer.” Dr. Vogel is the American Cancer Society’s national vice president for research.
http://www.bidmc.org/YourHealth/BIDMCInteractive/Blogs/LivingwithBreastCancer.aspx?tag=sentinel node
When I click on the link at the link shown above it goes to "page not found."
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LeeA - You haven't done chemo yet right? I would think that chemo would dispose of any micromets.
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Is this the link: http://onlinelibrary.wiley.com/doi/10.3322/caac.20053/full ( linky )
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Away from home on phone....before 2011 one to three nodes in Mx may or may not get rads...depended on the doc since there wasn't any studies on it. Now there is and i don't have it with me here....it shows rads is def.beneficial in place of alnd in the absence of gross disease....which is why mx get rads with Pos nodes....there are women at my center who get axilla rads only...but is because that's all they will take....right now there are no studies on axilla rads only....and most ros won't do it until there are....My ro will do it when a woman refuses any other....but he doesn't like it! Lol
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Omaz, no - I have not done chemo yet and that's definitely one of the questions I'll be asking the MO tomorrow (re micromets and chemo)
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Bren58, you may have already said why and I missed it but why would tamoxifen have been ineffective for you? I'm on my phone and can't easily access your post - hope I've got that right.0
