Starting Chemo in JAN 2007
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Re: TATTOES, Joni et al., all I had was one little dot between my breasts and a couple of dots on either side under the arm...miniscule, microscopic, nothing to worry about!!!!
Caya: get those ovaries out!!! What do you need 'em for except worries? OK, you're gonna have to deal with menopause but don't we all anyway?!! Aren't you ER positive?
Tamo vs. AIs...all the blog and talk was pro-AI since the studies came out a year ago, but gals, REALLY THINK about it before you decide on AIs. Another study indicates that the side effects on the AIs are so intolerable for some women they can't stay in treatment. I can't help but thinking that removing every scrap of estrogen from your body might be unnatural or harmful...post menopausal women and men EVEN men have estrogen. Why? Who knows?!! But it's doing something positive or else we wouldn't have evolved that way.
Tamo has been around for a long time and it's effective, and the SE's are well known.
My onc...who is the Head Honcho at U of M...the Cancer Center AND the Medical Academic apartment, prefers to Tamo to AIs even for postmenopausal women because of the bone problems. Perhaps a good middle of the road approach would be the original idea of 5 years of tamo followed by two of AIs. He said the risks outweighed the benefits after 5 years.
HOT FLASHES--how long do they last? Months? Years?
Nancy, I can understand how you feel about fake boobies; if I had to deal with them I'd like to be able to take them off.
Re Children & Wigs & Scarves...one of the nicest stories I heard was about a 6 year old daughter, who, when her Mommy went bald and had to wear a scarf, decided to wear a scarf too, even to school!!!
Love to all, and prayers for Skye, Robbin Jaye, and Mer's BIL...
Mizsissy -
Cindy - I'm planning on Tamoxifen after chemo. I guess my high oncotype score has me pretty paranoid. The side effects will really have to be bad to keep me away from it b/c I'm willing to do just about anything to prevent a recurrence. I know several women locally who have been taking it for 2-3 years and while they don't like it they are certainly able to tolerate it. My onc said it's my only choice for HT as there is nothing else approved for pre-menopausal women. I haven't researched it much yet. I figure I need to get through chemo before I start worrying about the next step. Plus I've banned myself from internet research for awhile - I just get too upset.
RobbinJaye - I don't know the answer to the insurance questions re: genetic testing. Our daughters will probably have a hard time just because we have bc with our without the genetic tests. I think there is legislation in the pipeline about this issue - but I don't think it is law yet. I don't think that just meeting with a genetic counselor would hurt so that you could get more info before making a decision.
Hot Flashes - I don't have any advice, but a friend did tell me that soy has a type of estrogen in it. She said it worked great for her hot flashes, but that her onc told her to not take anything with soy as it would feed her ER+ cancer. Mine really hit at night and in the morning but don't bother me too much during the day. I wonder why that is?
TPPJ - I haven't seen the movie, but I am with you on wondering why anyone would ever want implants on an elective basis. Of course, I've always wondered that. I'm such a wimp about pain that I would never do anything elective without a darn good reason. Anyway - I guess at least if you are just getting implants for enlargement you wouldn't necessarily have to have expanders right? B/c the skin is already there?
Oh, the cadbury cream eggs. One of my most favorite foods. I managed to limit myself to just 3 of them this year. I love those things! -
SKYE, HOPE YOU GET RESOLUTION ON THE RIB PAIN. I HAVE A BIT OF TENDERNESS ON MY RIGHT SIDE AS WELL... I ACTUALLY MENTIONED IT TO MY REGULAR DOCTOR A YEAR AGO JANUARY PRIOR TO THIS SUMMERS DX. I'D HAVE TO IMAGINE THAT IF I HAD LIVER METS OR IT WERE MY RIBS, MY BLOOD TESTS WOULD BE FUNKY... MY BLOODWORK COMES IN NORMAL. TODAY I WOKE UP W/A SEMI-PAINFUL SWOLLEN LYMPHNODE UNDER MY CHIN...ONLY PALPABLE IF I PUT MY CHIN TO MY CHEST. I'VE FELT THIS AREA FLARE UP IN THE PAST AND I THINK IT'S COLD/ILLNESS RELATED. WORRY.... I'VE HEARD THAT AFTER TX, EVERY ACHE AND PAIN BECOMES A WORRY.
Ain't that the truth! Maybe if you have tenderness too it really is a steroid thing or SE of some other thing we are getting. I'm beginning to understand that from now on every new thing that comes along is going to be a cancer worry until that possibility is ruled out each time.
SKYE, I'M NOT "COOL". ESP. WITH MY WHITE "DOG HAIRS", AT MY TEMPLES TOO AND I'M NOT LIKING THEM. MY NEW WORRY IS MAKING SURE THE WIG COVERS THAT AREA. A GOOD WIND AND FORGET IT... I'M TEMPTED TO SHAVE THAT AREA SO I DON'T HAVE THAT TO THINK ABOUT. ALWAYS SOMETHING....
Omigosh! You have white temple dog hairs? Anyone else have those? They are so weird. I thought it was just me. I'm tempted to put one of those Velcro baby ribbons on them.
QUESTION: WHAT IS A TURTLE HEAD? I READ BACK IN THE POSTS AND CAN'T FIND IT... I SAW "BUZZARDS" AND I'VE DEF. HAD MY SHARE OF THOSE!
Turtle faces is our term for that very sad, long-faced pity look you get from
people trying to look like they are sympathizing. I can't remember who came up with it. Rebecca?
TAXOL AND HERCEPTIN MUCH EASIER TO DEAL WITH THAN A/C. PRIMARILY BECAUSE YOU AREN'T TAKING STEROIDS FOR OUR DAYS AFTERWARD AND GETTING ALL AMPED UP/CAN'T SLEEP. PLUS, TAXOL ISN'T KNOWN TO CAUSE NAUSEA...NOT THAT I HAD ANY W/EMEND ANYWAY, BUT...
TPPJ, I'm still taking Emend and Decadron. I'm actually having MORE queasiness and nausea with the Taxol than I did with AC, nothing I can't handle and I don't have the metal taste or anything. But strangely, I can now again drink carbonated beverages and even a small occasional glass of wine. On the AC, those both just tore up my acid reflux. Go figure! But my onc staff never even considered taking me off the anti-nausea meds for the Taxol and I'm glad because I'm quite sure I would have urped during the infusion. Interesting how different our treatments are! - Skye -
Jan..what was your oncotype score? Mine was 36!!!! Can anybody beat that!!!!
Rebecca, I read that Arimidex website too, and I think it was FOS. Some really wierd study put out by a women's group at the big cancer convention in San Antonio a few months ago were reporting that most women had stroke symptoms on AIs. It all seemed to cockeyed to be true, but I think it is interesting that both my oncs, who are both the heads of their departments, are now recommending Tamo over AI to me, post menopausal! Did this study scare them? -
Mizsissy - nope, I can't beat your score Mine is 34
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Jan, I guess you and I are in a special category. Did you have a lumpectomy or mast? What chemo are you taking?!
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Hi,
TPPJ,
My fish and her2 test was 10.2, which was an amplified score because it was so high. My oncologist at Dana Farber also told me that it would be a waste of time and money for me to have the Oncotype test because my HER2 score would definitely raise the test score. The Her2 score is automatically plugged into the Oncotype test score. She said that if she would already know the oncotype test score would be high, why take it.
Skye, I asked my oncologist twice about the Emend during taxol, and she told me I would not be getting it. Maybe because I am getting 12 weekly doses? I guess all onco's are different.
I have to find a plastic surgeon. The one I finally picked was pregnant and will be taking off the summer. My surgery is scheduled for Aug. 1. What nerve- becoming pregnant when I need her!! LOL.
Anyway, back to the drawing board.
What is more important in a plastic surgeon? A "ward & cuddly" PS or a private room- both excellent PL's? Such decisions!!!
Lynn, Did you find a plastic surgeon? I am thinking of using Dr. Donald Morris or Dr. Hergrueter. Have you heard of them? How about you, Amera?
My surgeon likes using Faulkner Hospital because they all are private rooms. She seems to thinks that is a big draw.
Dr. Morris works out of Faulkner. He has an excellent reputation, but I guess he is not"warm and cuddly", according to my Surgeon's assistant. He was Kelly's Tuthill's PS. I figure she did her homework, or at least, she had plenty of resources that she used. Dr. Hergrueter, on the other hand, works out of Brigham & Women's, but he is warm and cuddly. I guess I have to choose so I pinpoint a surgery date for both the surgeon and PL together- not an easy feat. I can meet them both, but I cannot tie up surgery dates with both of them until I meet them. Their first appointment is not until May 15.
I make myself anxious about the most mundane matters. Any suggestions anyone?
Should I toss the dice?
Viddie -
I really can't keep track of everybody's dx. It would be nice to have that info where we could easily find it.
How about everybody (who wants to) updating their personal info page with the DX stuff (when, ER/PR/HERC, lump or mast, stage, onco score chemo type/length, rads or not, hormonal therapy, etc.)!!!!
Mizsissy -
Mizsissy - I started with a lumpectomy but didn't get clean margins and path report showed that in addition to the DCIS found in mammo/biopsy it was much more widespread and there was IDC plus a third type of tumor that I can't recall at the moment. So I had a mastectomy w/SNB 2 weeks after the lumpectomy.
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Viddie, I have not heard of either of them but I'm sure they're both good.
I think I would choose the one who is the most skilled. If you were newly diagnosed, I'd go for warm and fuzzy. You are far enough out from your initial dx that I don't think you need anyone to hold your hand at this point. AND, you will not have a long-term relationship with this person aside from the occasional check-up.
I figure, you have to live with your new boobs for a lifetime so you might as well get the best.
Funny how most surgeons have a crappy bedside manner. I've heard they are the most arrogant doctors in the bunch. My breast surgeon was terrific in every way--but she is in the business of dealing with newly diagnosed women. The plastic surgeons I inquired about all have the reputation of being very stoic. Go figure. -
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I make myself anxious about the most mundane matters.
Viddie, I find myself feeling this same way. I cannot make simple decisions. Everything becomes a big deal. I heard this is common with cancer survivors. I cannot remember the exact term, but there is a word out there to describe it. -
Amera and Viddie,
I have to say that I spend a LOT more time in the office of my Plastic Surgeon than ANY other doctor I am seeing right now, even my Shrink! I think it depends on what kind of reconstruction you have, though. If you do a flap surgery, probably this would not be as true as if you do the expander thing. On that...I have expanders, and I had a skin sparing Mastectomy, so it was not because my skin needed to be made bigger....PS said that the implant has to go behind something, and since I had no breast tissue, a pocket had to be made behind my muscle.
I will say that it is uncomfortable but not overly painful. It is a bit strange looking in progress, though...my right boob looks like it belongs on Baywatch, and my left looks like it belongs on National Geographic. YECK (LOL)
I do have to say though that I CAN NOT imagine why ANYONE in their right mind would do this "just because" It is a royal pain -
Hi,
I wilI be having implants because I am choosing to have bilateral mastectomy. I would have to have a reduction on my other side anyway, so I decided just go for the whole chabang. Piece of mind and all that stuff. Since I am having both boobs removed, they think I do not have enough tummy for two breasts, so I think I will have to have implants. So that means lots of visits to PS. They are both very skilled and both have excellent reputations.
Rebecca, Are you going to have the other breast lifted or somehow matched? The law says they have make them symetrical to if you want to and insurance has to pay for it.
Viddie -
Okay, I have about 1/4 inch of bristley hair. I can see my eyebrows coming back and well as lashes. I still have huge smooth spots on my head as well as those long hairs here and there. The hair on my legs is back.
My question is this...Will all this hair fall out again? I am 3 weeks past chemo. The nurse told me the stubble would fall out 2 week after my last AC because that's the normal cycle. However, I do not recall having any stubble grow between my other treatments, and so far, this is staying put. It's doesn't appear to be getting any longer though.
What have those of you finished with the AC discovered? I am desperate about growing my hair back.Although, I am getting used to seeing myself bald. Still don't like the looks but am really getting used to them now. I sometimes forget that I am bald and don't even notice if/how people are responding to my scarves. -
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They are both very skilled and both have excellent reputations.
Well then, pick the one who's warm and fuzzy! See, aren't I helpful? Much nicer to deal with a nice surgeon if you can find one. -
Mizsissy:
IDC, 4.8 cm, DCIS present, SNB (positive), 15 other nodes negative. Right Breast Mastectomy, ER+, PR+, HER2-, Chemo FEC (DONE ON APR 16), Radiation to start in May (25 sessions). I never rec'd an ONCO score, I don't know if they do those in Canada, Shorti, Caya, did you guys get one?
I am not doing reconstruction.
As for remembering things, I have a case of the CRAFTS....can't remember a friggin thing!!
Joni -
Amera - just thinking about a 1/4 inch of hair makes me green with envy I hope it doesn't fall out - it sounds like it will stay.
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I went out yesterday and bought the Nioxin, shampoo, conditioner, and this spray on stuff that is suppose to help with hair growth. My last chemo is next Monday, so I'm preparing, and I too am jealous of Amera's 1/4 inch.
Each time between chemos I have this one little spot that tries to grow, only to be zapped by the next chemo.
I also have to take Tamoxifen after chemo and rads, and they said for up to 5 years. I believe there are more people that cope with it very well, than the ones that have trouble. Two of the ladies from my church group had troubles at first, but they got thru the worst part and since have been fine.
Positive thinking will help us through it.
Also, are we making up a list of things to prep for for radiation? If there is one out there, maybe we could use it on our list. I know several girls have said that Fruit of the Earth Aloe gel really helps to avoid burns.
Nancy, got your pics..thanks.
Viddie, take the one who is best at their job, bedside manner is only for a short period of time.
Cheers everyone...going out for a nice long walk with Thor. Have a good day.
Hugs to all....Joni -
Jan, you and I had very similar diagnoses. I had a 1.4 cm main tumor that was visible on mammogram, then on the biopsy from the first lumpectomy they found another "invisible" tumor and some DCIS that they weren't too worried about. My surgeon and I agonized over whether to do a mast, a double mast, or re-excision, so we decided to go with re-excision because we could always do a mast later. He also was concerned about how I could deal with that major a surgery, since I didn't deal with the anesthesia at all well just for the lumpectomy...whew that short story turned into a long story!!! BTW, the second excision was a piece of cake just getting tranked and using a local!!! Fortunately the second re-excision was completely clean.
Amera, I'm sure you've got your hair for keeps. Two weeks is the critical time for losing after chemo. I was using Nioxin and my head got really itchy where I had clean shaved it, so I stopped for a while. My eyebrows have hair but it is very light. Anybody know about dying your brows?? Mine would look a lot better if the hairs were darker.
Thanks Joni for the dx info...here's another plug for EVERYBODY UPDATING PERSONAL PAGE WITH DX'S. Then we can talk to each other more knowledgeably. Sorry to shout.
Viddie...think about implants. My understanding is that the flaps work better and look better. See how your docs react to that. Also, look at and compare carefully their album of photos.
I think the Ice Age has returned to Michigan. Just had to drive 90 minutes through a snowstorm RT to Ann Arbor for a 5 minute CT scan (of my kidneys, to make sure I don't have stones, did yall know this can be a SE of chemo?!!) and have got to leave again for Brighton for a rad appointment. Tomorrow I have the wonderful pleasure of waking up at 7:30 to drive to Ann Arbor again for a cystoscopy (sp?). That's where they poke a catheter up your urethra to look at your bladder...sounds lovely, doesn't it!!! Anybody want to come along and hold my hand?!!
Mizsissy -
Rebecca,
I think you're right. If you weren't having a huge Tamoxifen issue, you wouldn't be online discussing it. I found it interesting that you heard that other cancerous issues tend to surface after 3 years use of Tamoxifen. Everything you read say's to do five and then switch to an aromatase inhibitor (provided your post menop. then).
I'm online a lot not to discuss problems I've had w/treatment, but more so I can handle this mentally. I'm just finding it so hard. I think the shock is finally wearing off. It's real. It's not going away. It's so comforting to have people who understand, first hand.
O Paranoid One surfaces again: I just got in from my echo. I had the same technician who on the first two echos told me exactly the same thing: "I not doctor but everything look OK." Today she said after much hesitation: It look pretttttttyyyy OK but I not doctor. You get results next week.
So, with that I called and left a msg. w/my oncos office that I'd like the results prior to the weekend as I'm anxious because I know my ability to continue Herceptin hinges on good heart tests. One more thing to worry about. Hey, you know what...if it makes me feel better to know and not let my imagination run away w/me over the weekend, too bad if they think I'm a pain.
Nancy, enjoy your new "boobs"! I wonder if they'll "fifty buck" you every time your insurance renewal comes up. I bet. In FL if you make even a single claim on your homeowners insurance, without fail, the next year, they cancel you. How can this be legal? It baffles me. I hope health insurance companies don't try to pull the stunts the homeowners insurance industry does. -
Viddie...think about implants. My understanding is that the flaps work better and look better. See how your docs react to that. Also, look at and compare carefully their album of photos.
VIDDIE, I DIDN'T KNOW YOU WERE CONSIDERING FLAPS. I DID TRAM FLAP AT THE TIME OF SURGERY. I'M FAIRLY HAPPY WITH THE RESULT AND HAPPY I DON'T HAVE TO DO THE IMPLANT/EXPANDER/FILLER STUFF THAT LOOKS TOUGH TO HANDLE. HOWEVER, THE SURGERY WAS ROUGH.... I WAS EXPECTING I'D HAVE NO PROBLEM AFTER HAVIND HAD 2 C SECTIONS. IT WAS FAR MORE COMPLICATED. LIFE WAS BAD FOR A GOOD TWO WEEKS...BUT AFTER THAT, I WAS PRETTY MUCH ON TRACK. -
my right boob looks like it belongs on Baywatch, and my left looks like it belongs on National Geographic. YECK (LOL)
Ha-hAAAAAAAAAAAAAAAAA!!!!!!!!!! -
Mizsissy, where can I find my personal page to update it? I didn't realize I had one.
I think I win the Oncotype score contest: I'm a 44. Viddie, I distinctly recall thinking why the heck am I doing this if I already know I'm HER2/neu+, i'ts aggressive and I'm doing mega-chemo? I wonder why my onco. didn't put the brakes on it. It wasn't a given that inusurance would pay. My dr. never mentioned an amplification score. Interesting. I'm kind of beat...gonna lie down until the school bus rolls in at 4. I think there's Daisy's (kindgarden girl scouts) tonight so I'll be playing taxi driver until at least 8:30 pm. Rain, rain, RAIN here. Soooooo sick of it! -
Amera, I went straight from A/C to taxol, so I can't comment on the hair... I have about 1/4 to 1/2" now (very little 1/2" strands) and it's just 100% unwearable. You can totally see my scalp still and it's white, as you know. Mizsissy, my brows are light too and I hate them...I'll need to dye them also. I need at least another months hair growth before I go into a salon for a consult.
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Hi Ladies,
Just popped over from the Feb group and saw your discussion about ovary removal. I considered this too, but check out this Mayo clinic study. Good reading.
http://www.mayoclinic.org/news2006-rst/3642.html
Jel. -
Hi,
TPPJ and Mizsissy,
I would rather have tram flap, but both surgeons do not think I have enough tummy for two new breasts unless I want to be very small- I am a DD now and I can drop to a C, but they do not think I have enough tummy enough for even a B- I cannot do an A after a DD. The rest of my body is small, just not my boobs. So I might have to do implants.
TPPJ,
Your Doctor should know the results in a day or sooner. I had my Muga scan yesterday morning, and they knew the results at the end of the day. They just have to read them.
Mizsissy,
My updated stats are as follows- 2.2 cm Idc no lymph node involvement. had lumpectomy on Nov. Some DCIS with multifocal discovered at 2nd opinion in Feb. - Getting bilateral mastectomy on Aug. 3- probably implants-
Amera, I am going to get some Nioxin asap.
Alert: Added anxiety level: time for ativan-but will not take it---
Thanks for your advice everybody. I am waiting for surgeon to call. I will ask her opinion. She highly recommended the PL who is pregnant-
Apparently when I called her assistant yesterday to book the pregnant PL- and I found out she would not not be working during the summer, I was a little surprised. I did some research and I made an appointment with not warm and fuzzy, based on reputation. When I called her assistant to tell her I made the appointment,she was nice and told me her opinion of the 2 surgeons- warm and fuzzy and not w & f. I asked her if could consult with both of them. On her own she switched my appointment for my chosen doctor to a later date- May 30 because the other doctor she liked (warm & fuzzy) was only available the same time of my previous appointment, May 15. Sounds okay until she told me that this would present a problem because she could not keep both doctors on the schedule until May 30- so I kind of have to make a choice.
I then told her that I would like to ask the surgeon who she would prefer- she told me hands down that the surgeon would choose Dr. not warm and fuzzy because of his excellent superior work---- why she didn't tell me in the first place----now I have to wait until May 30 to meet him. I am having the surgeon call me tonight so I can ask for her opinion myself. This is so aggravating- I know I shouldn't get so upset about all of this- there are worse things- but I am anyway. I wasted a day again. I should have a glass of wine tonight. That's an idea- better than ativan.
Viddie -
Viddie - just to complicate the issue more have you looked into DIEP surgery? I don't know if it would make a difference or not re size. I think I'd go with highly recommended over warm & fuzzy. It's more important that you like the surgery result than the surgeon. You'll spend more time with the boobs than the doctor. My onc has the NOT warm & fuzzy rep. Most people use the terms "arrogant" or "cocky" to describe him - but I actually think he's great and we get along really well. I'd heard so much negative about his beside manner - but I love that he tells it like it is and is very straight forward.
For the stress try Mizsissys "pre-emptive" bubble bath with that glass of wine.
And in my usual "it could be worse" way of thinking I heard last night about a local woman that lost her job and health insurance at the end of the expander process. She eventual found another job but is still uninsured. "working poor" I guess is a good description. Anyway - she's had the expander in for 2 years b/c of no money to finish the process. Apparently it has hardened and she's in a lot of pain. A local hospital has agreed to waive their fees, but she still has to pay a surgeon and the anesthesiologists costs. They are trying to do some fundraising for her locally. Anyway - I just can't help thinking what a nightmare that would be!!! -
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Rebecca, Are you going to have the other breast lifted or somehow matched? The law says they have make them symetrical to if you want to and insurance has to pay for it.
Yes, Viddie I am having work done to my "national geographic breast" I am going to have it lifted and augmented, but it will not be until August or Sept, so until then I am going to be a bit lopsided. My insurance company is required to pay for this, and they have (in principle) agreed to do so, but in actual practice they are giving me a very hard time. -
I think the actual risk of failure is 47%. I read that on the internet. My surgeon confirmed that. My plastic surgeon said you might as well call it 50%. Chance of constriction, breakage, infection. I also talked to some people under the breast reconstruction section. I hope it goes well for you. I just can't take a risk now with all that I am going through in my life.
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No not looking forward to Tamoxifen but I heard it increases your survival by 50% so I guess I will just have to deal with the side effects.
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