MIDDLE-AGED WOMEN 40-60ish

elimar86861

NativeM, I'll agree with you that the radiation protocols seem to have been around a long time without much revision.  Sure wouldn't hurt to have a more modern take on the benefits of rads in relation to the newer therapies.  I get what you are saying about blood supply and tissue necrosis.  I just don't know how to precisely figure that with the reports of local recurrence occuring right at the tumor bed and scar line area. 

jlbloom, That's the important part...that you feel comfortable with whatever options you choose.  Rads does have a lot of collateral damage, especially when you are getting treatment on the left (heart) side.   The sad fact is that some of us would be perfectly fine with no other treatment than the surgical removal of the B/C.  Unfortunately, there is no !00% way to identify who those someones are. 

Just last night, my husband and I were commenting about how awful it is that I can't KNOW whether I still have cancer inside me or not.  How can I not think of my MO as nothing more than an money-grubbing Insurance Salesman?  (And apologies to any B/C sisters engaged in this line of work.  We all gotta eat.)

NativeMainer

Unfortunately medical science does not know why bc, and many other cancers, tend to recur right at the scar site.  The current thinking is that a few stray cells get rubbed off on the tissue during surgery, and the stress those cells undergo makes them less susceptible to treatment.  Or perhaps there wasn't truly a clear margin, since that is only looked at in certain places, not the entire periphery of the removed tissue.  Since medicine still cannot explain how cancer starts to begin with, any explanation of the behavior of cancer cells is just as likely to be wrong as right. 

I do acknowledge that many women undergo chemo with no side effects, and no permanent damage that affects their health or lives.  I do acknowledge that rads can reduce tumor size and decrease pain from bone mets. 

We all need to make the choices that work for us.  I will forever regret that I chose lumpectomy and rads over mastectomy at the beginning. 

I think it's the never being able to KNOW if the beast is still lurking or not that makes this whoel thing such a miserable experience. 

cmharris59

Just my 2cents..  I had the uni-mast, rads, and lots of chemo... lots of SEs -permanent and disabling.... regrets? YOU bet! I can't speak for the rest of you, but the changes to my quality of life, have made me regret every decision about my treatment. Sometimes wish I had just let the cancer do it's worst... Maybe I am just having a bad day... again..

Loral

I refused chemo and rads, with a onco score of 34. BS says she had great clean margins, and I told her I'm trusting in her. I just now take Tamoxifen. Left breast, I didn't want to deal with heart issues from rads. I hope all turns out okay for me, but only God knows, what will be will be.

MinusTwo

Eli & Native Maine:  Thanks for the discussion about rads.

Dianarose

Well it took 3 of us 6 hours, a lot of elbow grease, oven cleaner, degreaser, and a wall paper steamer to clean the kitchen at the bakery. She shines now. So much more work to do. I am trying to keep focussed, but I will admit it is difficult. I started a thread to see if any other members here had ovarian mets. No one. I feel alone here with this one. I guess I just can't be normal, whatever that might be. I knew going into chemo that it was a slim chance of doing anything, but it was all I had going at the time. Thinking back I wish they would start those of us who are highly er and pr positve on the AI right when they find out. I was diagnosed in March of last yr and I have yet to start them because of surgeries, chemo, rads, more surgery, and now look at the mess I am in. If that is our strongest weapon why the dam wait. Sorry to vent. I am just so tired and cranky.

cricketsandfrogs

Thank you, NativeMainer. I had tears as I was reading your response to me and so appreciate it.

Diana - I, too, am sorry for the loss of your friend.

Now I am looking forward to Wednesday and getting my drain out (hopefully).....and....a good night's sleep. Missing my Dad today.

NativeMainer

Dianarose--WOW!  That's a lot of work!  I bet it looks fantastic now, though.  I very much doubt you are the only one with ovarian mets, give the new thread a little time, summer tends to be a bit slower on the boards than other seasons.  And it's ok to vent, that's what we are hear for.  They don't start us on the AI s right off 'cause the chemo and rads depend on the cells being awake and active, and the AI s shut them down and would decrease the response to the chemo, especially.  And I can imagine how tired and cranky you are feeling right now. 

Crickets--YW.  And I'm missing my Dad, too.  Know how you feel.

barsco1963

Dianarose - no wonder you are tired! Holy cow that's a lotta scrubbing,washing and wall paper removing in one day! It is good that you have the bakery to keep you busy and of course focusing will be more difficult these days. You have lot on your mind. Hang in there and continue to "let it all out" when you need to. Remember that we are here for you through the good, the bad and the ugly. Hoping to see pics of the "Queen of Tarts" when she's ready for business!

Crickets - here's hoping that drain comes out on Wednesday! 

barsco1963

Eli - love the matching outfits on the ladies at the top of the page! Looks like a pajama party - Pillow Fight!

Dianarose

Hauling stuff to the bakery this morning. I have collected stuff over the yrs, just didn't realize how much. It is warm and sunny so it feels good. I have to wait from 1-5 for the phone company so more cleaning.

Crickets- I hope you get those nasty drain tubes out too. You will feel so much better. I hated those things. I remember the burning.

NativeMainer

Dianarose--I just love setting up a new place, I can imagine the fun you had yesterday!  Hope the phone people actually showed up like they were supposed to!

Anonymous

Crickets- welcome! You made me laugh out loud with the pineapple on my head vision.....!!!



Good conversation about the rads....I too opted out of the rads and had a prophylactic MX to hopefully increase my odds against recurrence without the radiation.......I think partly, for me though, I also consider that part of my arsenal if the beast does raise its ugly head!



Okay.....I'm wearing sweatpants with big pockets tonight for my MRI. Wine, beautiful men, and your favorite music are all welcome and appreciated. I'm a lover of music that can't remember the names of songs or artists....just like it all, classical, country, pop...(not rap so much although I've enjoyed some). I'm whipping up some of That hummus too! Thanks for the recipe!

Jeannie57

Elimar, yes, I have never heard of anyone else having 39 nodes removed. Since they didn't take all the nodes there, my PS thinks I probably have a lot left. Also, maybe I had a meticulous path. who searched for every last one, I don't know.



Diana, so sorry about your friend. Cancer sucks. I'm amazed you feel well enough to work on your new place. You are a strong, fighting warrior. You won't like this but my MO says lobular going to ovaries is rare. What can I say? I'm sure there is someone on these boards who has ovarian mets.



My first three month checkup was fine, other than the double poke in my foot, trying to get a blood draw. Then, with LE in both arms and compression garments on, the nurse practitioner says I can really get blood draws from my arms, no problem. Why doesn't everyone get on the same page??? Nobody is touching these arms except my LE therapist.

NewHopeAndrea

Hi everyone and thanks for starting this thread.  I am 53, divorced with 2 children aged 18 and 22.  I was diagnosed end of February, have done chemo first, trying to get psyched up for surgery beginning of August, then 7 weeks of rads with protons.  I had not had a mammogram in a while which is a regret ... I am now stage 3C.  But you can't manage backwards, as a work colleague once observed.   I hear the concerns about the rads, in my situation it seems like I really do need it to have a survival chance, based on yesterday's meeting with a radiation oncologist (I know, of course he's going to think that - but up until yesterday I was not sure the lymph nodes in my chest were going to be treatable at all).

I have a lot of physical and emotional ups and downs.  My chemo has been dose dense A-C and now Taxol and I have had painful and difficult SEs (see, hand foot syndrome and Taxol pain).  I am also fearful of surgery, lymphedema and loss of function.  At the moment I actually am feeling more hopeful than in a while, based on my meeting with the rads doctor yesterday who made it clear that he and my onco still believe I have a decent chance for a cure (he also mentioned, "without the radiation you're a goner").  There are internal mammary nodes in my chest area which are not reachable surgically, and they are tricky to radiate because the heart and lungs are right there, etc.  He says with protons it's possible and we have one of the relatively few facilities in the country nearby.  I know there are lots of risks and other damage that can be done to the body, but frankly, the alternative is not good either - I will accept what comes after fighting the good fight, but I feel am not done with my life's work yet!  I have lived with MS for 10 years and lost function and faced a lot of future uncertainty with that too (somehow, it seems even more unfair to get cancer when you already have a serious disease!  But the immuno suppressive drugs I have taken for 10 years probably contributed). 

I wish all of you the best in this journey and let's give each other the hugs that can really only come from those who understand. 

elimar86861

I had to get a quickie (ONLY an hour!) thyroid ultrasound this morning, and I wanted to travel light so I pulled on some capri's and a shirt with no pockets at all.  No pouting, you all can come to my next scan.  So, back when I was getting all those scans, "eyes to thighs" as they like to call them, there was a little nodule on my thyroid.  I had ultrasound specifically on it and it looked nothing more than a tiny nodule at that time.  My MO said I could get biopsy or get ultrasound monitoring in another six mos.  I chose the latter.  When I was just at MO last Monday, I reminded him that it was the six mo. interval to check the thyroid again.  He was like, "Oh, yeah."  I also mentioned it was time for my 6 mo. CBE groping.  He was like, "Oh, O.K."  Seems that he is really only focused on my current cancer, but I remember it ALL, indeed I do.  All the docs have laptops now and have all the records right at their fingertips, yet it comes to me to remind him that we need to follow-up on certain things?  Is it any wonder I am always feeling like I should just BILL MYSELF for services?   Sorry for digressing there.  I was able to find out that all is well right from the tech.  I told her, "Hey, I know you can't really give the results, but you have my last US from six mos. ago in there, so if you happen to say something like 'It looks the same as last time' then you save me a five day wait on a phone call."  She was cool, and said something like, "I can see it and I'm not seeing any difference from the previous image."  Still have to follow this up periodically with US, but I have no worries.  That's another reason I didn't need to fill my pockets this time.

Chacha, since I am already in scan mode today, I'll definitely tag along on yours later.

Greetings, AndreaLodahl!   I had plain old rads, not the fancy kind WITH PROTONS.  I'm going to have to look that up.  Sounds more high tech than regular and I'm the kind of gal that lets a robot operate on her so, of course, I am jealous!   When anyone says "yes" to rads, and then never does recur, there is no way to know WAS IT the rads or WAS IT NOT, never really knowing if you needed them?   You may never touch the dice or get in line for the Powerball, but B/C makes gamblers out of us all.  I did the rads, now it's just wait and see whether the universe is going to laugh in my face.  BTW, what surgery will you be getting?

luvmygoats

Welcome Andrea. This is a fun, supportive thread with Eli. Ask away any questions.

Eli - I know Proton therapy is for structures like the brain, prostate where other vital non-involved structures are a millimeter or so or maybe less near. I had not heard of it being used in breast CA but with Andrea's involved internal mammary nodes it does make sense.

Glad your thyroid US was uneventful.

My oncology center is building a proton therapy center midway between Dallas and Ft. Worth. One is also under construction at UT-Southwestern in Dallas. I can't imagine as large as the metroplex is the nearest one is at MD Anderson.

Dianarose - Wow you are the busy worker bee. Can't wait to hear about the 1st day of the Queen of Tarts. When do you hear about 2nd path report?

Chachamom - in your pocket for MRI. I'll bring the cake.

Well, I had a fun chest CT week b4 last. I developed a knot at the sternoclavicular joint. Now I of course went to the dark side but also knew costochondritis was the most likely cause. So since I was due to see MO the next week anyway got in a week early. He thought most likely the costo. but said it did move a little bit. So off to CT. His nurse boo-booed and called me even though I had a return appt. Nothing seen 'cepting some spinal degeneration - DUH. So went back for appt. and Eli I can so relate to being our own advocates. He wanted to know how the "pill" he had put me on was helping. Turned out he thought he put me on Celebrex (which is a cap, not pill). Days I think I need to change MO. Whole 'nother story about that. Anyway started the Celebrex yest. after thinking about it for the weekend - after all it had already been 2 weeks he thought I was on it. I was an early adopter of NSAIDS for menstual cramps. Never met one I didn't like so hope this will help the costo. as well as the Femara aches. We will have to talk about long term maybe Mobic. Oh yeah, he does tumor markers and they were unchanged from last Sept. So we shall keep truckin on.

NewHopeAndrea

Thanks for reply.  My surgery plan has not been finalized since I have not yet had post chemo scans.  Started with big tumor (3cm) in small (cup suze breast, so they told me while it was possible it would shrink enough for lumpectomy, more probable I would have MRM.  It has shrunk but still between 1-2 CM, plus the peace of mind factor, so am pretty much thinking it wil be MRM (I have several malignant lymph nodes under my arm as well).  Have just begun thinking about reconstruction.  I will probably opt for a saline implant which would have to be put in before the rads.  Not an candidate for TRAM (the one person I know who recently had it, also has had complications) and the more extensive surgery for lat dorsi seems like a mixed blessing - another major surgery and possible compromise of my "good" arm.   They can't do proton thru TE. 

Sherryc

Welcome Andrea like luv my goats never heard of proton being used for BC but it does make alot of sense.  I had a friend who had it done at MD Anderson Houston for lung cancer that had mets to his brain.  He had already had brain rads before so the proton was the only thing that they could use and it worked.  Andrea there are many other flap type reconstruction that can be used.  I don't know where you are from but I would consult with someone that has the ability and the experience in all the procedures.  I was not a candidate for DIEP flap so I choose implants.  But you can use hip, inner thigh and buttocks if you want to use your own tissue.  My PS has a great website with information of all the procedures if you want to take a look at it. http://prma-enhance.com/  I use Dr. Ledoux but seriously all 6 of the Dr's are top notch and they specialized in breast reconstruction.  If you have questions you can call Brandy Korman the patient liason and she can answer any question you may have.  It may help you with finding out what you really want to do. 

Eli glad the tech gave you a hint and glad everything was OK. 

Dianarose

http://breast-cancer-research.com/content/6/3/r149

Jeannie- the research does show that those of us with ILC have a much greater risk of ovarian cancer. I think the numbers are low as ILC only makes up about 10% of all breast cancers. Not as much research has been done on lobular either. Sucks to be different.

Elimar- if your doc's paid you for all of the their work you do you could go on another cruise.

Andrea- sorry you are here with the rest of us. I had to have a lot of radiation to the chest wall as well. It is a hard choice. I have a friend who has MS and breast cancer as well. I never heard of the proton either. What is the benefit?

Luvmygoats and Nativemainer- I am having a hard time focussing on the bakery. I seem to get less done than I had planned. I was told this new path report could take a couple of weeks. It will be 1 week tomorrow. I did find out that the pathologist is new, really??? I found his mistakes and I am not trusting anything in it.

Anonymous

Luvmygoats....sorry...I had to stick my finger in the frosting the cake looked so good! Gotta get all my munchies down before 4:30.



Eli, I second what Dianarose said- if your doc's paid you for all of the their work you do you could go on another cruise.

I guess it's too much to expect our MO's are as invested in our futures as we are!

At least you got the tech to give you her perspective of no changes! It's always the waiting for the results that are stressful, not the procedure!

Dianarose

Just got an email from the MO and he hasn't recieved the path report yet, but did get the results of the fish test and it is Her2- not Her2+ as was stated in the first path report. Big screw up as far as I am concerned.

heartnsoul76

Elimar - glad you had such a "quick" experience with your thyroid US. Nice of the technician to give you her opinion. I can never get them to talk - I must need to work on my technique.

Welcome Andrea! Sounds like you've been through hell and back - so glad you found us and hope we can help answer any questions and have a little fun while you are enduring treatment. We've been discussing rads here recently. I felt it was pretty clear that I would need radiation because my tumor almost went to the chest wall so I had small margins. I just felt like whatever wasn't removed needed to be zapped.

Chachamom - hope I'm not too late for the PP! I found this nice gentleman waiting outside to make sure you are okay:

And since it's so hot I thought margueritas would be just the thing:

Ladies, I also brought some hot wings! I know we're going to make a mess of Chahcha's pockets (a preemptive sorry about that!)

cricketsandfrogs

Diana - Oooooooo - BIG, BIG mistake on the path report.......wow.....

Andrea - I am almost 53 (in a few weeks) and quite new to this thread as well. I love the women on here already.

Chacha - I consider one of my greatest gifts to be the gift of levity. Glad you liked the pineapple on the head visual. That is something I cannot really post on Facebook as it will embarrass my 16-year old daughter. Then again, sometimes, I post stuff like that just TO embarrass her - it is good for her!

Still looking forward to getting my drain out tomorrow. I meet my oncologist for the first time next Monday - it feels like forever since I was first diagnosed, but I guess it hasn't been that long...

Beautiful evening in the North Woods and I am enjoying a glass of wine with all of you!!

MameMe

I am jumping back in after a coupla months away from the forum... heartnsoul, those images were SOO evocative!!! Each one just landed in 3D, front and center!

I am two months out from radiation, and have been back at work full time since April. I left the whole tx thing behind until I had an onc appointment last week. Worst week of my recent life, all vulnerable and wobbly. All my questions about having had bc twice came back. I have been prescibed Arimidex, but cannot, for the life of me, make myself take it. I am 62 and am noticing a big change in skin, weight distribution and joint achiness recently. I can FEEL the estogen draining away and it's quite sobering. I can't quite buy into the need to take an AI on top of the age related changes for a 50% reduction in the 16% risk I have for recurrance. Am I being a total ignoramus?

Meanwhile, I am catching up on everyone's situations, wishing you all the best in your challenges with these crappy diseases. Dianarose, I am so impressed with the bake shop you are creating. Going straight ahead does not have to mean going full tilt.

All best, Mame

Momine

Diana, same thing happened to me. I think the problem is that it simply is not that easy to tell. After my hyster, they also checked 3 times to make sure there were no cancerous cells.

NewHopeAndrea

Hi again - you guys are great.  His explanation was that protons can be made to go in far enough but then stop dead without continuing on to tissues behind.  Usual rads travel all the way through your body, although they are losing energy as they go.  He said when your tumors are in front of your heart and lungs, it's very hard with usual rads (photons and electrons) not to hit and affect what you don't want to hit.  That's why the photons are a big deal for cancers where you need to radiate in front of some other vital organ.  He also "has" one of the 11 photon centers and obviously is excited to use it.  He was clear that there are still risks and downsides.  Like everything! 

Anonymous

Heartnsoul, thanks for the goodies!.....I'm afraid I made a mess of his beautiful white suit though....that's what happens when you mix margaritas and BBQ sauce!.......oooohhhh but we had a good time :-)



Now it's just the wait....7-10 days. I'm not going to think about it (that's my story and I'm stickin to it) until my appt w/ MO on July 1

Dianarose

Momine- this guy didn't even use the proper test and yet went ahead and said it was positive. Wouldn't it be nice if he was a real idiot and got the cancer part wrong as well. I know I couldn't get that lucky.

barsco1963

Chacha - you do throw a great PP - I sneaked in a bit late as I was away for my onc appt yesterday also. But I did manage to catch a peek of the man in white leaving the building. I think he is going to have to toss that suit out you little vixen you! Keep us posted on the result of your MRI.

Welcome Andrea - hope that you hang out with us and enjoy the comraderie, support and encouragement of everyone here.

Eli - glad to hear of your uneventful thyroid scan

Dianarose - I like your "idiot" theory and that he got everything totally wrong! Sending you ((hugs)) and smiles.