February 2012 MX

Hi Janice!

I'm glad to hear you're ready to go back to work...I'm almost at that point too!  Yea!

Re: the lymph nodes...I had the same thing..with the nodes being in the chest wall.  I'm assuming they did the sentinal node biopsy with you and the they found that your chest wall sentinal node was negative so they didn't go further??  But, anyway, so I don't have any underarm incisions either.

Re: the oncotest....I'd definitely ask your doc.  They can use your paraffined tumor to test so it could be sent out even now, if you want it done.  

I walked 2 hilly miles the other day, thought I was completely back to normal, sat on the couch and fell asleep for 2 hours!!!  So, I guess I'm not completely back....was used to hiking 6 miles a day with no nap!  Ever!  So, I guess we're all still recovering....

Anyway, have a good day back at work!

Anyone starting chemo soon - i will be if everything goes as planned. I think probly next month as soon as i am finished healing they found another fluid pocket and had to make another cut/hole to get it out so now i have to wait for it to heal.

I got my last drain out FINALLY i am doing the happy dance and happy shower in one more day. I better not have any complications again or i will scream so loud people will hear me all the way from Canada to the U.S.

Nel- i have found nothing about breast cancer has been easy to accept.  Everything from the way i look now, pain from sugery to emotional feelings,chemo,rads,medications and then there is the fear of the cancer returning. I find i am trying to have acceptence that my life will never be the same and i am sort of starting a new life whether i want to or not. I guess it comes slowly like you taking a look in the mirror is one step now time for the next step. You are doing great.

Deborah- i am so sorry your number was not good. I have become an expert on recieving bad news and feeling scared or frustrated. When i look at your DX it makes me realize that for somethings you can have as hard of time of it as me in an advanced stage. It makes me understand that things are not always easier for you. You have seemed upbeat and helpful all through most of ypur postings here i am sure you will be fine. Keep your good attitude as i am sure it helps others on here as well as yourself.

Doctor said she finally had my first "not bad news"  to tell me yesterday. She said i am ER and  I think PR positive. She was thrilled that she finally had something good to say. So from what she says this is good news.

Congrats to everyone else that received good onco numbers and good news recently!  I hope to read more

Xrays of hip and femur and referral to PT for this pinched nerve pain.  Said if that doesn't help, call her Nurse back and will be sent to Neuro.

Hey, everyone! 

Met with my onc who referred me to a genetic specialist today.  Spoke with the specialist over the phone for about 2 1/2 hours!  (I'm the one with a sister, aunts, cousins, and had a mom with breast cancer.)  I found out today that I, for sure, do not have the BRCA 1 or 2 mutations, however, there's something "funny" going on in our family, unless, unbeknownst to all of us, we happened to be under a crop duster in a field at some time in our lives...all together... !

Anyhow, the specialist said that they are on the verge of discovering a new genetic mutation for breast cancer afflicted families without the BRCA 1 & 2 gene mutations who also don't have the ovarian component, like the BRCA 1 & 2 affected.  So, anyway, we're all going to be donating blood so that they can figure this out.  Kind of excited to be a part of this possible new discovery.  I guess it just makes me feel like I'm doing something important for this cancer business.  Helps me to focus on the bigger picture instead of just me.  Nice feeling....

Sorry Cajmi - that it's taken so long to respond to your question of a week ago regarding having only annual mammograms and you not seeing a MO.  First of all, my budding oncologist son COMPLETELY disagrees with both.  Having an MO follow up with a variety of oncology issues is important.  Secondly, I was just told yesterday that I only needed annual mammograms (no MRI's, no more frequent mammos, etc.)  For heaven's sake, my mom died of this about 9 years ago, and my cousin died a couple of months ago due to breast cancer!!!!

In fact, here's how the conversation went yesterday when I asked my MO what my followup treatment would be...her response was that we'll continue to do annual mammograms and a bone density test every 2 years.  When I showed concern over the annual part, she said that she would "watch" me very closely by seeing me every 3 mos and do blood work.  When I asked how she would "watch" me, she said that, and I quote here, "YOU will know whether your cancer has metastisized  before anyone else.  YOU won't feel well...that'll be our clue."  (WHAT??????  I NOW HAVE TO BE MY OWN ONCOLOGIST?????)  Then, I responded that I never felt my original cancer and she said, "Metastises are different.  You will feel them or just not feel well."  THAT WAS SO IDIOTIC THAT I COULDN'T EVEN RESPOND!!!!!!  Yes, one can SOMETIMES feel pain if a metastasis is in a bone, but when it is in your brain or in your liver, you're not going to feel it until you're close to death!!!!!  I guess when I can "feel" something the size of a grapefruit or when I've had flu-like symptoms for a month or two, then I'll know I'm dying.  Then my wonderful oncologist will step in.  Good grief.  

Oh, and there's more....I also said to my MO that since my tumor had both ductal and lobular features, and I knew that there was more of a tendency for lobular carcinoma to spread to the other breast, shouldn't I have more frequent mammos?  She said that that was "old school" thinking...that it really wasn't the case.  Gosh, that "old school" thinking is being taught at UCSD's School of Medicine NOW.  They must really be behind the times..... Again...good grief.

Definitely time for a second opinion.

Good morning to the Fab Feb Females,

Although we've all been "F'd" to the third power by BC,  we are undaunted and marvelous!

I can't wait to get home from work to see how all of us are doing!  I know it takes time as some of us return to the workforce outside of the home and begin treatments, but I am so relieved to hear from all of you.  

Pelican Girl are you out there?  Long time no post.  I know you've had an extra tough time.  Wanted to let you know you've been on my mind.

Beth1965- I believe today is your actual shower day? Congratulations!  You are finally untethered by your last drain.  You'll find yourself dressing and moving in the old ways as if the drains were there and then realizing that they're gone! Now, you'll have new issues with trying to figure out what you can wear without the drains.  " You might be a BC patient if you have PDQ- Phantom Drain Quandary"  I know. Somebody smack me, I can't help it. I just love these faces! They're like Colorforms when I was a kid.

DebbieOS- you used to hike 6 miles daily? Wow! Naturally, you're tired after your two mile hike and had to take a nap.   Zeetus Lopitus the sustained dose of outside fresh air alone is enough to tire you out.  I'm finally up to 30 minutes on my elliptical but can't do any weight training on my home gym because it'd rip out my PS's restoration project.We middle-aged gals are supposed to be doing weight-bearing exercises to prevent osteoporosis.  Ironically, with impending HT, that would be a good thing as bone density loss is a common SE. 

Galsal.  You kill me! You just throw these one or two line quickies out there, keep marching along with a great and the most flexible attitude as another stumbling block is thrown in your path.  This week it's blood clot history and pinched nerves.  Must you meet EVERY specialist at the VA?????

November, so nice to read your post.  You're one of our more "shy" FFFs.

Janice, I thought your drain pattern was super interesting.  I had a weird one,too.  Level one (primary) nodes apparently drain first and then go to Level two (secondary nodes). Mine went level one node #1 to level one node #2 and then skipped to secondary level node #1. I can't even connect the dots correctly.

 Nel- I am sooo confused.  You have weightless foobs?  They are not filled with fluid? 

Wren44 and Layla- that sucks that you have skin sensitivity to clothing. 

I'll add to this thread later with the details of what my onc shared that may be helpful to others.  It's actually very interesting.

Deborah2012

Debbie,

Thanks for asking your son his opinion.  It is the way I feel too, but just wasn't sure  because of the BMX with the TRAM recon and because it was only a stage 2 DCIS. 

I'm  sorry your MO is such a jerk.  There are so many schools of thought and different options it makes it so hard to make an informed decision.  My situation is pretty straight forward and for that I'm thankful.  If I hadn't mentioned, they would never have given me the option of the BMX to forego rads and HT. 

That is rediculous about you knowing about the cancer first!!!  While I'm sure we are all much more aware of how we feel, it doesn't give us the ability to see inside ourselves!!!  If we had a recurrence of the exact same thing in the same place we might possible know, but at what cost.  I think as you said, once you're aware it's at a more advanced stage.  For me, I was diagnosed based on microcalcs found on mammogram.  Granted I only have 1-2% remaining breast tissue, but I don't know where it is, and my tumor was strongly ERand PR+.  So, I don't feel the benefit of HT outweighs it's risk, however, I don't want to stick my head in the sand and pretend like I may not develop something again.  I'm sure if I do, I won't be as fortunate, and it will probably be invasive and without scans potentially advanced.  Wow, sorry you guys probably didn't want or need that info...

Anyhow, thanks for asking him, now I just need to get more assertive in my requests for follow up.

I'm glad you have your son to bounce things off of and to hopefully keep your MO on his toes!!!

Deborah,

Thanks so much for the science lesson!!! I love all the info, being a science geek myself. It's amazing the progress that is made even on a daily basis. I'll have to share the her2/3 info with my sister as she was her2+. I wish I could find the article I saw last summer about an Israeli study for a breast cancer vacine which had implications for other cancers as well. They felt it would be available there within the next 6 years. I don't think it was a scholarly article, so I'm not certain of the validity of the details, but certainly intriguing.

I hope everyone has a wonderful weekend!!!

Thinking of you all,

Carolyn

Hi All-

PLEASE MAKE SURE YOU READ THIS before starting on HT.  Maybe some of you had already read it, but I hadn't.  I was going to start Arimidex on Monday but am now going to talk to my MO and see whether I can instead start with Tamoxifen and then go to Arimidex.  (Gonna first run it by my son this weekend)  But, please read this article before doing anything:

http://www.breastcancer.org/treatment/hormonal/new_research/20110823.jsp

Hi DebbieOS-I was reading about the genetic testing they are doing. I just had the third one taken because of the same scenario basically with the sisters, aunts etc. I had the negative BRA1+2 then they did the one that catches the genes that one may have been scanned over which, came back fine and now I just did the other one that should be back in 10 days looking for the same "fishy" situation with the cancers of all types in the family. At this point I will be getting a letter for my daughters to start their mammo screenings at 27. Their ages are 30, 27, 25 and 23. My daughter that is 25 already had a lump which they cleared but now I am glad I had the family mapping done so they can be their own advocates when it comes to breast issues and hopefully the letters will clear any insurance issues. I have been told to get a colonoscopy this summer for other issues (not happy about that one) and I did have the bone scan. Should my oncotype come back indeterminate I am leaning toward the Chemo since my sternum was lite up on the scan. It may seem like over kill but I figure at my age now i am fairly healthy and still a good healer. In 10 years who knows what I will be looking at. I want to take my best shot. I have been having pain in my breast bone for a while with a low grade fever for over a year and plenty of appts. to find this mystery pains and fever and a mammo was never suggested. With a history of spinal stenosis and ruptured disc and arthritis I feel if something was spreading it would be passed off as a prior issue. I am not big on pain meds so I go the holistic route as much as possible and I have a high tolorance for pain so I feel if there was something going on it would be a much more serious DX by the time it was found. I am not sure if any of this rambling is making sense but the bottom line is, first this was just supposed to be DCIS then after going in and seeing a spot hidden from the mammo they found the IDC. Granted it was small but maybe there is a small spot already somewhere else. I don't want to wait till "I should feel it" point either. My dad died of pancreatic cancer in less then a month because it didn't cause pain or problems until it was too late. My daughter who had cancer at 5 didn't show any symptoms till the tumor had already made it through the base of her skull and was pressing against the sack that surrounds the brain. We have been blessed she is now 27 but we went the very aggressive route. I guess this sounds very scarey or depressing even paronoid because this is so new, but I feel everyone should go with their gut. We are all pretty much in tune with our bodies, we are all unique and don't follow all the statistics that are out there. Kinda like the pirates code, "it's more like guide lines". All that just to say I agree with getting a new MO or second opinion...we have to be our own advocates.  Wow guess I had some venting to do..sorry.

 Hope everyone is doing better today then yesterday

Hi Galsal...I was told to see a Rheumatologist next. But since I was DX'd with BC I am sure I will be worried for at least the first year for every ache and pain. It seems some docs get desensitized or think of you as a complainer or maybe insurances just don't want to put the money out so their hands are tied. My BC "team" is great and very accommodating when it comes to my concerns and anxiety so I feel fortunate for that. I also was reading about the effects of omega-3 and tamoxifen because I would like to get back to taking it (and apple cider vinegar for my joints) and some of the reports are very promising. I mention this because the lack of estrogen increases your risk of heart disease and you have a strong concern about blood clots (so would I):

 Quoted:  "Omega-3 fatty acids benefit the heart of healthy people, and those at high risk of - or who have - cardiovascular disease. Research has shown that omega-3 fatty acids decrease risk of arrhythmia's (abnormal heartbeats), which can lead to sudden death.  Omega-3 fatty acids also decrease triglyceride levels, slow growth rate of atherosclerotic plaque."

I will be discussing this with my MO should my oncotype actually come back low and Tamoxifen is recommended.

Thanks for the encouraging "vent away..your among friends"

 DebbieOs, Thank you so much for pointing this out. I will ask my 2nd opinion onc..

Here's my stab at what it means for the early stage 1 post-menopausal women.  I am NOT an expert.Anyone please double-check me. I welcome it. I could miss a white elephant sitting in the room!

 Synopsis: The order & duration of using an Aromatase Inhibitor or Tamoxifen either together or separately can affect outcomes of both BC recurrence & overall survivability after BC.The question is what do you want to try to avoid dying from- BC or something else? BTW, I wanted the results in a table format for better comprehension.

Overview: Case#1: 5-yrs. Aromatase Inhibitor; No Tamoxifen= a 20% advantage of not having BC recur.

                  Case#2: 5-yrs. Aromatase Inhibitor; No Tamoxifen= 11% increase of dying (but NOT from BC).  They don't know why.  Authors state that the 11% value is NOT statistically significant.  I'm not a math-head, so I discarded that since it was "not statistically relevant".  For others it may be vitally relevant. It may be the white elephant in the room  That was the big mystery. It is suspicious of a cumulative greater toxicity with Aromatase Inhibitor than Tamoxifen.  Why did women avoid BC with Aromatase Inhibitor, but their overall longevity was reduced? They don't know yet.

                  Case#3: Tamoxifen 2-3 yrs; Aromatase Inhibitor 2-3 yrs. = same as 5 yrs. of Arimidex of not having BC recur.

                  Case#4a: Tamoxifen 2-3 yrs.; Aromatase Inhibitor 2-3 yrs. = same as 5 yrs. of Tamoxifen for of overall survival

                   Case#4b:  Tamoxifen 2-3 yrs.; Arimidex 2-3 yrs. = better than 5 yrs. of Aromatase Inhibitor alone for for overall survival.

Next Steps:

1. Consult your onc. for your own personal case due to SEs of each medication and your own personal existing health risks-conditions that are independent of BC i.e. heart, circulation, blood clots, arthritis, migraines, etc.

2. Whatever you decide- you need to stay on it.  So, if you can't handle the SEs of one drug and go off the regimen altogether- none of these results mattered.

For me personally, I'm leaving it to the experts.  However, it is incumbent upon me to inform them of any pre-existing characteristics I have that could be affected by the known SEs of each HT.  I don't expect them to memorize my case history at every appointment.  I will bring the study with me.

I am very grateful to DebbieOS for bringing it to our attention because so many of us FFFs are currently making these decisions.  Also, Breast Cancer.org merits a shout out for making the information so readily available.  I probably need to make another donation to them!!

BTW, I corrected this after a couple of hours after orignial post. I had to substitute "overall survival" instead of BC recurrence for cases 4a and 4b.  Additionally, they used "aromatase inhibitors" not just Arimidex brand. See there- ya gotta watch me!

The thing that bugs me is it is not explained why there is a correlation as to why the overall survivalbility rates aredifferent for each drug.  I'm always a bit careful with equating correlation to causality. Not that they are claiming that. It just seems to be implied.

Deborah2012

Wonderful weekend....finally got to hold my precious grandson (9 months) for the first time since my surgery.  Well, I did cheat and hold him while he was sleeping 2 weeks ago...I just couldn't stand it anymore.  But this weekend I really got to HOLD him!!!  Yay!!!

LOL  pita eh. 

Stenosis is the abnormal narrowing of the spinal canal.  

Nel-its good to hear you say that chemo is not as bad as you anticipated. I suppose the fear of the unknown is usually the worse part. I hope everything keeps going well for you. Are you doing radiation too or just chemo? I just found out they want me to do radiation after i finish chemo. that is funny about your foob! I have cotton filled fake foobs right now too i am struggling to make them do what i want. i think the silicone foobs must be much easier to maneaver. I will get them when i am healed. Hugs to you

 I did have good news on friday i do not have bone mets my doctor seemed positive she would find mets somewhere in me but so far so good. My lungs are clear too. The are redoing my liver they saw some sort of blemish as they called it but do not seem worried.

I am still not allowed a full shower yet-unbeleivably one of the worst parts for me so far. I had an infection and a pocket of fluid that had to be fixed so they say i have to wait a bit longer. So i am still no table to break my neck doing the happy dance in the shower.  But i am allowed a half a mini bath or a hip down quick shower rinse so at least i get this now its better than nothing i will take it.

Good for you ladies!  I don't think I'd be able to handle foobs on me right about now. 

I know there's a section for lymphedema but does any one have it and is it uncomfortable or hurt?  Thinking I'm going to start taking tylenol again.  Have to wonder if the spot where where the drain  was on the left cancer side that was right at the mammary fold has contributed to things.  It's still just as sensitive as at the beginning.