TRIPLE POSITIVE GROUP
Comments
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lago, I was surprised to hear (from the breast surgeon this past Saturday) that they probably wouldn't be doing additional receptor tests on the actual tumor.
I noticed (in the small print) that they keep the samples for 15 days so maybe that's the standard operating procedure - i.e. hold it for a bit in case an oncologist wants to take things further.
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In my google image searching days (prior to diagnosis) I saw many breast samples (as I'm sure you all did as well) - i.e. photos of remnants of breasts. At first, anything like that was too much to look at but as time goes by I guess one becomes inured to the many-faceted horror shows that a breast behaving badly can put on. All that said, I've actually wondered if there's a photograph of my tumor. I would like to see the damn thing. Stare it down and minimize it in my mind - once and for all. I don't know about you all but I sure did know what it felt like. My husband would come back to the bedroom (aka my "office") and say "aha, there you are touching your breast again..." Actually, I once went an entire week without touching it because (a) the acupuncturist advised it (b) I read that touching a lump can make it worse (but I think that was in relation to scar tissue that needs to heal, i.e. fat necrosis/fibrosis).
I'm going to try to be good today and not post too much. It's not even 9:00 yet and I'm already in full-blown jittery/nervous mode.
We're going for another follow-up with the BS this afternoon and I already know what his thoughts are regarding more surgery, whereas the oncologist seems to think, nope, not gonna happen and my guardian angel/twitter friend/BSFF- breast surgeon friend forever - who I'm finally going to go in and see for a second opinion is, initially, in agreement with the oncologist (but, in all fairness, she hasn't reviewed the path report yet).
On the other hand, I am so, so relieved to have an oncologist in place. My blood pressure shot up to 160 over 90+ during the appointment yesterday - the highest white coat anxiety to date, something I've never had until breast cancer came a-calling. We've been testing my BP at home and it's been perfectly normal, i.e. 118 over 70, etc.
It's pretty amazing to have hard core proof of what stress does to the body - even in a short term situation.
The nurse yesterday, a guy who was also a cancer survivor - said the following "you need to relax as much as possible because this really is just a bump in the road."
He also said that the morning after his surgery he asked the nurse to open the blinds and it turns out his hospital room looked over Forest Lawn in the distance. There happened to be burial taking place and he started laughing and said the nurse looked at him like he'd lost it. He said "maybe I have a weird sense of humor but the next time you have a patient complaining about feeling bad just throw open the curtains and say 'but would you rather trade places with those folks?'"
I really liked this guy. He said "I literally stop and smell flowers now." Oh, and he was telling us about a friend who had testicular cancer and he asked the guy if he was going to get big Great Dane implants. Well, my husband was able to follow all this but I thought he said the guy had BREAST cancer and was going to get breast implants as big as Great Dane breasts! I really am like Gilda Radner's old character Emily Litella. When this breast thing settles down I might a go to Costco and finally get fitted for hearing aids - something I've needed to do for a long time but just resisted out of vanity (?) or stubborness or something (my father had early hearing loss but I always thought it was because he had an infection as a child from swimming in a sheep hole).
The oncologist brought up the regional AC-T versus TCH thing (I hope I have those acronyms right - I know I've seen it mentioned here on this thread in the archived pages).
He said the tug-of-war is, in large part, because the AC-T protocol comes out of Sloan Kettering (East Coast) and the TCH protocol comes out of UCLA (West Coast). Probably old news to you all but I didn't realize it was a case of institutional "rivalry."
Thanks again to everyone for offering up thoughts/opinions and experiences on the node front. I can see the advantages to both schools of thought (removing vs. not removing) and if I don't have them removed I'm sure I'll always have SpecialK's 6mm macromet in the back of my mind because that's just the way I am...and that's certainly a consideration in all this (meaning, the way I am - the proverbial worry-wart, nervous type). Conversely, our families are all across-country (hubby's - 3000 miles away - my small family - 2400 miles away) and we like to vacation 3000 miles in the other direction (Kauai) so lots of long-distance air travel. On the other hand, a recurrence in the axilla isn't going to make for many happy returns to the garden isle...or anywhere else for that matter. And yes, I know, lymphedema can happen with a SLND and rads as well.
Obviously, I'm going to need to give this a lot of thought and the fact that several of you have shared your experiences/thoughts will help me sort through all this.
If, by chance, I end up not being Her2+ (despite having those three pluses?) - well, that may be another factor in the decision.
I'm hoping I'll get the okay to drive AND take a shower. These bird baths are for the birds. I still haven't shaved under my arms because I'm assuming I shouldn't. I need to ask the BS today about that.
Also, re: lymphedema -
I have always had overactive cuticles. My husband never has to do anything to his cuticles and they look very neat and orderly. Do any of you have what I can only think to call overactive cuticles? Just pushing them back doesn't work. I've always meant to look this up (overactive cuticles). Obviously, cutting cuticles is another possible danger with lymphedema.
And for whatever reason, the oncologist has me scheduled for lymphedema therapy the first week of December (which is fine by me). At their center they measure the arms (and perhaps more) prior to surgery - it sounds like a machine/imaging process. I took all my measurements the day before surgery but I don't think anything was done (officially) prior to surgery in the hospital setting.
This is all so overwhelming. Not a day goes by that I don't think about the missionary woman in the 1850s who had a (uni) mastectomy without anesthesia (and obviously without chemotherapy follow-up) and lived another 25 years. Additionally, she wouldn't have had any antibiotics (I just checked Google - the first "safe" antibiotics were put into widespread use in 1945).
I hope everyone has a good day. 'Tis the season to be thankful and I sure do feel thankful to have found this thread and the women posting here, had the tumor removed, settled in with an oncologist, etc.
If anyone is traveling, travel safely!
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Lee my onc worked with Dr. Slamon (really want to write Salmon) so I'm sure that's part of the reason why I did the TCH but I'm glad I did. Increased heart issues with A and it sounds like the SE are hell to deal with. I did notice that women going to Sloan, Dana Farber and Mass General all got AC-T not TCH. I know a friend of mine couldn't continue on T because of neuropathy so she had to the A. You're lucky your arms are being measured before treatment. Mine never where so no one really knows how much bigger they got. I always had skinny arms so even with the swelling most people don't see it.
If you're not HER2+ please stay here.
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leeA here's a thought...those of us who have neo-adjuvant (chemo before surgery) leave the entire tumor burden in us until after chemo. They could start chemo now and in the meantime you can get another opinion on the ALND...if you decide to do it you can always do it AFTER chemo. Maybe something to discuss with your team?
fluff i had that blood test, came back high and went on blood thinners. They thought i had a clot bc i was having chest pains (years ago, i was on a long flight overseas) anyway to this day they don't know if i actually had a clot or if the levels were high because of a previous infection (that can sway the results aswell)
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Wow, what a wealth of information on these posts. I am going to re-read when I feel better. I would like to throw out a question to all who have had rads. I have been told in addition to a very intense chemo regimen, 4 A/C, 8 taxol, and one year of herceptin, that I will have to have radiation also. I don't get why. I had a lumpectomy, 1.6 cm with clear margins. SNB two nodes, all clear. I know I need the herceptin because of the HER2+ status, but one year? As bad as I feel now guys, I am not making that chemo regimen. Weigh in if you like..
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Hi Waiting - the herceptin is a targeted immuno therapy and not technically chemo. Once you are on the herceptin only after you finish the ACT you should start to feel better. You are still monitored for heart function and other things but the herceptin only shouldn't make you feel like you do on regular chemo! As far as 1 year goes, they just presented results from two clinical trials and the both agreed that 1 year of herceptin was the optimal length of treatment. As for rads, many clinical trials have shown that lumpectomy plus rads has signficantly fewer local recurrences than lumpectomy alone, even with neg nodes and clean margins. So doing the rads gives you an advantage against local recurrence. It's hard sometimes. Hang in there.
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Also waiting - Your tumor was ER- which means that when you finish the one year of herceptin you are done. For those of us who are ER+ we have anti-estrogen pills for 5 years. Since you don't have that 5 year option they want to treat you with every available treatment possible right up front.
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Is there ever an instance where they do a lumpectomy and no rads?
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Lago- thank you so much for all the tips regarding TC protocol. I had my first dose of Taxotere 12 days ago. The SE are very different from AC indeed. I will definitely have to remember to chew on Ice next time as I did get very bad sore mouth and acid reflex. I was prescribed a magic mouth wash and renatidine and it helped me a lot. Did not have much pain in my body just sore from Neopogen. Hope the side effects for the next 3 sessions are not going to get progressively worse.
The other side effect is being CONSTANTLY hungry BTW your hummus looks great
) I looked in to the penguin cold cups to purchase and yes to much $$$$ for me.Just wondering if any of you had nose bleeds. I am having some intermittent nose bleeds not copious amounts also some red dots on my cheeks and they are not itchy or sore.
LeeA- Both times when I was diagnosed my first results for HER 2 where EQUIVOCAL (uncertain) with a score of 2. After FISH on the first diagnoses 2.5 years ago HER 2 came back positive with a score of 5 however on the second diagnoses a month ago HER2 by FISH came back negative with a score of 1.1
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I'm new to all this but from what I've gathered, lumpectomy = rads.
My BS does the intraoperative radiotherapy which may lessen the overall radiation experience (from a time spent in radiation perspective). Since I ended up having mastectomies I didn't retain much information on that option.
Coincidentally enough, one of my schoolmates (from kindergarten through senior year of high school) and my BS have supposedly had spirited professional dialogues about the amount of radiation necessary following lumpectomy. My old schoolmate, who probably wouldn't remember me from an old empty locker, is a radiation oncologist at MD Anderson in Houston. When I've googled his name he seems to come up as one of the go-to guys/experts for radiation oncology.
Anyway, apparently he ascribes to the belief that, when it comes to radiation - more is more, whereas in some cases (not all) my BS believes that less is more. Or something.
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dimidani - Were those determining tests done on the final tumor (after excision) versus the biopsy?
And was the mouth wash called magic mouth wash? I'm assuming not since it was a prescription but some of these pharmaceutical names have kind of cutesy names, i.e. one I use for my face (acne) is called Ziana. Ziana doesn't come cheap. She can't be had for less than (+/-) $400 a tube...
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rozem, you bring up a very good point re: neo-adjuvant treatment and the nodes. I've been reading about a different kind of node procedure (sounds less invasive) which I plan on asking the BS about today. It's called Mastoscopic axillary lymph node dissection. I think I may have posted the link earlier in the node conversation but I'll c/p it again in case anyone is interested in finding out more.
Dated November 9, 2012 -
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dimidani - chemo has an effect on all of your blood cells - this is why many docs prescribe Neulasta to boost white cells, they watch red cells/hemoglobin and will transfuse if you become too anemic, and platelets also take a hit. Platelets are what cause blood to clot so when they are low you will have nosebleeds. These are mostly a nuisance but be careful if you have one that will not stop. If so, go to the ER.
LeeA - it is always good to remember that docs like to do whatever is their specialty - surgeons like to operate, radiologists like to radiate, and oncologists like to treat systemically. It is not too much of a mystery that a rads doc thinks that more radiaton is good, while a surgeon who sees what lots of radiation does to skin may not be that much of a fan.
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LeeA the bio-markers on the first diagnoses were determined by biopsy. I had neoadjuvant chemo.
The bio-markers on the second diagnoses were determined after excision of node. Prior to having the excision I had a fine needle aspiration and it came back positive for Adenocarcinoma.
The Magic Mouthwash was prescribed by the oncologist on call you can not purchase it over the counter . At the cancer center here we have a 24h help line. I am in Vancouver Canada so probably the meds/prescription are different.
Thanks for the name of the acne medication.
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SpecialK -
Thanks you are absolutely correct. Had blood work done a few days ago. Platelets 112, hemoglobin 120 , WBC 5.2. Red cells 3.8. Results are not to bad. There was no indications of having a need for transfusion however I still have this mild nose bleed. I put polysporin in my nose and I purchased a humidifier we will see how much it will help.
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dimidani - I had mild nosebleeds on TCH. I think furnace weather contributes to the dryness. Putting some polysporin or aquaphor in your nose with a qtip and using the humidifier at night should help.
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waiting - mastectomy OR lumpectomy + radiotherapy give the same survival outcomes which is why lumpectomy always gets paired with rads...
LeeA - looks like you are getting lots of good advice :-) Now you just have to decide what YOU want to do and what you think you can live with.
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SpecialK, you are absolutely right.
When I asked my BS about my old kindergarten classmate it was during the first appointment (October 6) when I was still a breast cancer virgin and hadn't even done that much reading (other than to find him prior to going on vacation).At that point I thought they all did the same thing - i.e., surgery, manage the chemo, radiation, etc. My BS is an oncoplastic surgeon, whatever that means, so I thought he was my one-stop shop for breast cancer.
Now, looking back, I didn't even realize what kind of oncologist my old classmate was until about a week ago!
Oh boy. I sure do hope the dreaded chemo fog doesn't descend too far over my already addled brain because I don't think I have much fog room left to give.
Now I'm wondering who does the intraoperative radiotherapy stuff when my BS does that type of procedure...Probably a radiation oncologist as part of the surgical team. Doh!
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dimidani - thanks for the mouthwash update. I just found this
link http://www.mayoclinic.com/health/magic-mouthwash/AN02024
and I'm adding it to my list of questions for the MO.
RE: the acne medication - I have no idea if you have problems with that or not but I have for years and even more so since the very month I had my last period.
I just told my husband about an hour ago that (knock on wood - hard, really hard) my face has really cleared up since the surgery. Up until I found out I had cancer the biggest thorn in my side was this horrible adult acne - so he's used to hearing my "hope springs eternal" speeches about "maybe my skin has finally cleared up" (only to have it spiral back down again a few weeks later). He brought up the fact that I'm on ciprofloxacin but in the past, that's actually caused my skin to break out even more (this topic makes me nervous because I always feel like I'm tempting fate by even discussing it and my skin has, in many ways, turned me into a hermit of sorts).
Anyway, I'm wondering if anyone else here has had adult acne during their forties.
In my case, I was postmenopausal during most of my forties which is when I thought I'd finally be free of this monkey on my back (a monkey that actually turned into a baboon after I put away the Tampax box for good).
Of course, in my attempt to make The Tumor™ the villain responsible for everything bad that's happened in the last nine years, I am now wondering if it was somehow connected to these skin nodules. Of course, this probably doesn't make much sense considering it's a grade 3 tumor and it would probably be as big as a beach ball if it had been around for a total of nine years.
Anyway, since the tumor has come out I've used very little acne medication - just an antibacterial bar and a little bit of crushed aspirin (now and then), followed up by witch hazel.
Whatever has brought about this lovely respite, I'm quite happy about it.
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Dimidani I had the nose bleeds. Not uncommon with Herceptin but once I stopped doing chemo they weren't as bad or often. I had terrible heartburn & reflux. Was on 2 meds by the end. Be sure to tell your onc. Prolosuc never worked for me. Was on Protonix then had to switch to Nexium due to a new insurance. Also was on Carafate. My onc was the one who told me to suck on ice after tx 1 because I got a mouth sore on my tonge. Won't help with reflux but will with the sores.
Lee I used to have bad acne. I was on Acutane 3X. By the time I hit 40 my skin had no acne issues.
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lago, I was hoping for the same at about that age but then things took a turn for the worse. I've always battled with acne but didn't really have scars until my forties.
BTW, I'm not a hummus fan but I'm going to copy your recipe for my husband (he loves it).
Our favorite middle eastern restaurant serves baba ganoush (which I've never tried) but what I really crave from there is the fattoush. I've only seen it on the menu at three restaurants - one in Hermosa Beach, CA - the other in Glendale (CA) and I got lucky and was able to have it a few times in Haena (Kauai) at an out-of-the-way, last restaurant on the road kind of place.
If you're a salad lover you might like it as well. I think the key to it is a seasoning called summa or summac? I've never been able to find the seasoning in the store. We have plenty of middle eastern grocery stores around here but I've never gone on a wild goose chase (yet) to find it.
http://www.lifestylefood.com.au/recipes/12259/fattoush-the-original-recipe
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I've never tried it but have seen it. There are so many Middle Eastern places here in Chicago. You get to choose Lebanese, Persian, Israeli etc. The owners of the one that is walking distance from me are from Jordan. The other one we've been going to for years is Lebanese. We tried the Persian one recommended by my dentist (he's Persian) and thought it was pricey.
I'll have to give it a try next time.
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Port went in today. I knew it was going to be a bad day when the nurse blew my vein in the first IV attampt. I have really good veins and usually even the most inexperienced nurses never have a problem. Well something clearly went wrong with the attempt in my hand. The next attempt in the crook of elbow went smoothly.
After talking to the doc about the procedure and possible complications, we headed off the the OR. Next problem, they couldn't get the cath in the vein they wanted to use and had to go right for the jugular. Wonderful. I wake up in recovery (not throwing up like I usually do
) with pain in my back every time I try to breathe. So it's off to xray for a picture of my lungs. Next bit of good news, the wire hit my lung and it partially collapsed. Great. According to my nurse DIL it hapens more often than you think. They gave me the option to go to the hospital for 24 hour observation or come home with pain meds. I decided to come home with pain meds, the BS's cell and beeper numbers and instructions to get to the ER if I have trouble breathing. Somehow I think the BS will be calling me tonight.Sorry for the abrreviated version of a very long day. I am not as good with words as others are.
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Bren58
Sounds like you've had a bad time with the port, how awful for you. If it helps, I had an xray taken too, they have to make sure it's inserted into the vein correctly, it's just routine. Hope you feel better!
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bren - all of this stuff sucks, but it is made that much worse when you have an extra-sucky experience to compound it. Hope you are resting comfortably and don't have any further complications!
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Wow Bren what an ordeal. My port surgeon told me that puncturing a lung was a possibility with port installation. I think he told me because I'm so small framed and thin that the risk was higher than others. I remember another gal here had that happen. She healed up just fine but still scary.
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Bren - I hope you start feeling better soon! That was rough.
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((Bren)) hope you feel better soon. Hadn't having my port put in, but then a collapsed lung on top it it! Meh! Prayers for peaceful rest.
Pbrain- maybe it's me and i missed ya, and the board is moving fast, but everything okay?0 -
Hello sisters,
It is amazing that a lot of you are sticking together to help each other and other sisters that newly joined. I could not keep up with the posts for a few months. But I am thinking about all sisters on this board all the time and glad to know you are doing great!
Will have a total hys on Dec 3rd. While I am trying to get myself ready to this surgery, during my last appointment with Onc on Nov 8th, he also felt a lump, right under the skin where my only sentinel node was taken. I had BMX so have no breast tissue any more. The lump is moving around, felt like the lump I felt in the breast many years ago, which turned to cancer two years ago. The Onc sent me for an US the next day. Got an appointment today to see the Onc for this Friday. Very nervous. I felt good in general, I mean I eat and sleep well and try to keep good health for surgery. Not sure what the lump could be. But lump is a lump, I should ask for a biopsy, should I? Any thought is appreciated.
Take care. Meg
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Meg it's moving around which is usually a good sign that it isn't BC. Based on what they US shows they will decide if you need a biopsy. If just a cyst then no you won't need one. If they are not sure then I would think they'd biopsy it give your history.
Thanks for checking in. Hoping for a smoothy hyst.
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Meg, here's hoping its a cyst!
Bren, I know someone else in the board had a pnuemothrorax too. Was it maybe TonLee? It happens, sucks, but you are home. Now just don't try to be brave and tough it out, but call if anything feels wrong. Much love to all.0
