2012 sisters

Glad to hear i'm not alone on that front. I kindly say thanks and store that info where I see fit.

Finally got results from the biopsy on my right breast - and it came back benign - yeah! That said - I'm still moving forward with my plan for a double mastectomy. Curious how many others out there took out a "healthy" breast to avoid dealing with the possibility in the future that those irregular cells could turn into something ugly down the line - not to mention getting symmetrical reconstruction...

*puts hands on lower back and bends backwards*  Ugh!  I need a massage lol  I'm in casserole mode...which feels vaguely familiar to nesting. ;-)

I may not be all gung ho about eating right now and probably won't be later either...but that moment comes I want it to be something other than pizza!  Which is what will ending being on the menu...night after night...unless I get some serious meals done and in the freezer!

So far; 2 large rectangle dishes of chicken enchilada 'casserole' and 3 deep dishes of Mac n Cheese (the homemade kind).  Tomorrow will be penne pasta bake and chicken/broccoli/etc casserole.  Anybody else wanna toss out some suggestions?

Or toss me a masseur?  And a mojito?  hehehe

Great answer Cindy!  LOL  

Websister - I started getting 'suggestions' and 'recommendations' from people since day 1.  And the really bizaar suggestions come from people who are normally very conservative.  Its been very intersting.  I just kindly thank them and tell them that I'll check it out but since I still have a child at home, I'm not likely to take chances with my survival.  Then I smile really big

I know they mean well... but those questions rank right up there with all the non-doctor-friends trying to tell me what my prognosis is and that I have nothing to worry about.

 TTFN - I have a date with an MRI machine tonight LOL 

Hi everyone, 

Thanks for everyone's concern about my Mo app today, so I went there this morning and it was not what I expected at all. As you all know that I'm still waiting on my hormone receptor results next week, so I went in there thinking that this MO is going to give me the benefits of chemo and weighting it against the risks and try to figure out if chemo is for me after reviewing my receptors results next week.

Well what I got when I went in was this: He immediately assume that I was there for a chemo consultation (meaning which cocktail he would recommend that I take. He assumed that I was taking chemo while I was under the assumption we (my DH and I) were there to discuss whether I was even thinking about taking chemo based on my diagnosis. He said that based on my age(34), the reoccrurance for me seems to be greater than older women and that was the only thing that he mentioned. He said that he will have to wait for the receptors results to determine which cocktail and he went on and on and the different types (which he named all the different ones but it was all very confusing to me). I asked him about the oncotype test and he said that's only if my ER+ then we could think about doing the test. 

I explained to him that I wanted to weight the benefits against the risks for chemo and he went on to show me the Adjuvant program and the % and all that. Now he said that the program is not based on women my age, from my understanding, the program was done with data compiled years ago from women who are older than me, so basicallt there's no actually statistics showing for women my age. The only thing he said is that because I'm young, my % is higher than the % shown.

So I've been doing some research on including natural treatments like the anti cancer diet and juicing to decrease my reoccurance rate and I mentioned that to him (now I didn't mentioned any names like Burzynski or other alike although I've done extensive research on them during my journey, I find them very interesting but in no way was I thinking about treatments from them), I asked him "What about including alternative treatments", his reply " You're talking about people like Burzynski or the Gerson's diet, are you? There always say that FDA and CIA and others are out to get them and that the Pharm companies and FDA trying to put them out of their business since they have a cure that doesn't profit the BIG pharm companies. There's no prove that any of that works! The figures I'm giving you are from actually clinical trials and are directly from the proved sources from FDA." (He talking about chemo here)

With that being said, I didn't like that tone at all, I never said I was going to do the Burzynski or even considering Gerson or budwig protocol, but I thought he would want to hear what I had to say as well. I asked his opinion on a better diet and he immediately jump to budwig and gerson's and made me sould like I was crazy for even thinking about anything else but chemo. He told me to run some blood work to see if my body could take chemo and I asked him about checking my Vit D level, since I've read that Vit D levels affects cancer as well. He said " Vit D? Which alternative treatment is that from? Where ever you get that from, its not proven that Vit D has anything to do with cancer."  I asked him why did I get cancer, and he can't answer me, he said " There's no reason to ask why, there's no use" 

Now ladies, the % he showed me is really hard to understand, he's showing me like at 7-10% chance of it coming back with both chemo and hormone therapy. I thought the reoccurance rate is 1-2% vs 6-7% with mastectomy and lumpectomy. Can someone explain to me the difference now? He showed me that withER+ it was something like 30%reoccurance rate if only do surgery and like 10-12% with both chemo and hormone therapy.

I'm really not happy with this MO, I need for him to tell me why chemo will benefit me not assume that I'm doing it and treat me like I have the plague whne I talked about including other treatments.  

Great answer Cindy. 

websister... suddenly everyone is an expert in bc.  You will realise and learn that people, although well intentioned (most times), are pretty dumb when it comes to what to say to people with cancer.   And I have found that it is ok to be 'honest' with them too.    Just at the beginning its hurtful.  Come share any experiences with us and we can laugh about them and throw them under the bus.  

Believe... hope the rad appt. went well.

Finally the sun is shining here - and as this is the first day I feel up to anything I am going to enjoy some restful gardening.  Once the soccer is over (Euro 2012).

I really hope you are all having enjoyable bearable se days.

Soyaandpepper...so sorry your visit went that way. I see my mo tomorrow and I am hoping to start off better than you did. I am expecting what you expected but now I know not to expect that! Fortunately I do know my hormone status and with the new LCIS found and the three idc tumors, I am expecting they are going to throw everything at me!



I have a question for everyone...



I have to make a choice about reconstruction. I now have to have a bmx. If you had to or chose a bmx...



Did you reconstruct immediately? I know I can because no radiation.



What kind did you pick? TEs to implants or tram flap? (Those are my choices) Why did you choose one over the other? If you did either...what was your recovery like -really?



I know i have so many questions and there is no one that I know around my age that has done either! I am leaning towards implants...I don't know if I can handle the recovery of a tram flap! I know that is MAJOR surgery and even the benefit of a tummy tuck is scary!

soya.... I do not not know how I missed your post ??  

I think you should change your MO (hope that is an option for you).  What an arrogrant prick.   Talk about commit 'assum-icide'.   How maddening.   Alternative therapies can work very well in conjunction with 'standard' therapies too.   Please see if there is someone else you can discuss this with.   Like we dont have enough crap to deal with.

I cant answer your percentage questions soya... sorry, but I bet someone here could. My recurrance rate WITHOUT chemo was 95% so bit of a no brainer.

Sorry you had to go through this - grrr... makes me so mad.

Lisa... happy you could laugh today.

palemettomom.  Good luck with the appt tomorrow.  Cant answer your questions either.

palmettomom-what is your age?

I'm 35 and I have NSBMX direct to implants, direct to implants was available to me because:

1-I didn't need radiation

2-I was a small 34b to start with and wanted to stay around the same

3-I was able to save my nipples and skin

My reasons for choosing the direct to implants rather than TE to implants or tram flap and alike:

1-Weight 115lb and didn't have any fat to do anything else, much less get 2 breasts

2-Didn't want to use any of my muscles from the back or abs since I'm very active and weight train

3-Wanted the least amount of surgery as possible

My recovery was really great, need help for the first few days or so around the house, and help with bathing and putting on clothes. I had 2 drains and they came out 6 days after surgery (which was a relief), developed some cording from my SNB but working through that and its 90% better.

All in all, my NSBMX was pretty good and that's my experience with direct to implants, I know a lot of doctors do not do direct to implants but there's also a lot that do it as well. Find out if that's what you might want and if you're qualify for the direct to implants. If you decide to go with TEs to implants or the other options, I'm sure someone else on here whose done it will come along to share their experience.

Cindyl, lol! I'm with you on that wish!

jpmomof3-I'm not stuck with just this MO, I want a second opinion so I'm going to ask my surgeon to recommend me another. We'll see how it goes, I'm going back to him on Friday to discuss what took place with the MO.

As to the my NSBMX, I had direct to implants, so I went in with my breasts and came out with foobs without the feeling of TEs. As to sensation and feelings around my breasts, I do have numbiness, the feeling of numbiness is from the nipple to about 1 1/2 inches outwards. From the beginning, right after my surgery, I didn't have feelings in the entire area of my foobs, but some came back week by week. The reason I know that was from my surgeon changing my dressings twice a week, I felt more on each of my visit to him when he pulling out the tape from my dressings. 

So I get back feeling on the outer areas of my breasts and absolutely nothing on my nipples yet. My surgeon said I might or might not get some feelings back and it all depends on each individual. He said with a mastectomy, the cutting of the breast tissues severed nerves and it will take time for them to regenerate.

So you still have to discuss with you BS about which procedure you're going with? Or is that determined already?

lisa2012- My implants are silicone Mentor CPG 323 at 345cc textured, I've done research on both and decided silicone was best for me. Mine is the so called "Gummy Bear" so the gel inside the implants acts just like the center of a gummy bear if you cut one in half. You could do some more research on both and see which one you're happier with, both have advantages and disadvantages. If you have any more questions you could PM me or ask on this thread and I will answer you!

lostinmo - Glad to hear others go for removing the healthy boob. At 37 with two kids and even without my brca1 results yet, it just feels like the right choice for me. Not to mention that my kids sucked the life out of my boobs and reconstructing one to match the remaining would be a waste of a reconstruction... And as for our humor... well - my husband is a jokester and we've taken the cancer joking route in our house to lighten the mood. And my four year old and I have started doing "silly word of the day." Every morning when he gets up he asks me what the silly word of the day is and we come up with a word that will make us giggle no matter what is going on. We haven't really explained anything to him yet, but are speaking pretty freely in front of him. Considering he is a bit more easily driven to tears these days, my guess is he senses something big is up. But we can always get ourselves out of a funk by saying the silly word of the day in our silliest voices. Works for me as much as it works for him - especially when he gives a real genuine belly laugh over it.

One of my best friends, the woman who has been my rock throughout treatment, is going in for a lung biopsy tomorrow.  I'm so very worried for her.  More than I really was for myself.  Shes got so much on her plate, and she certainly doesn't need a serious, even life theatening diagnoses.  Sending b9 thoughts to Janet.

I wish this thread wasn't getting so many new members... but I do really appreciate us all being able to share since we are in the same damn boat.

Tazzy - my chemo-coladas are strictly virgin these days so any gaps in my thinking I will blame on chemo brain. 

Chemo-Colada Smoothie

1 can pineaple in juice (15 to 16 oz can)

2 ripe bananas

12 oz yogurt (I use 2 containers of Yoplait Greek 2x protein)

1 can coconut milk (about 14 to 15 oz. I buy CCN milk with no gums or sulfites but if you can tolerate them many canned types have them)

1 tsp vanilla

4 TB protein powder <- optional

Scoop out the pineapple from the can, but not the juice, and put it in the blender. Add all other ingredients and mix, puree, whatever your blender button says. Add the pineapple juice as needed until you get the consistency you like. I used the whole can this AM and it was a little on the thin side for my taste. If you have rum flavoring I'm sure that would go in nicely. This smoothie has been sustaining me on days when my appetite has not been very good. This makes a huge batch and I freeze the rest in ice cube trays or today I used my muffin pan.

 soya - I think you're right that with chemo, rads and tamoxifen, recurrence rate for hormone positive BC is supposed to be down around 1%. That's what I have written in my notebok from my inital consultations with my Drs. If I get some time I will try to dig up some links for you.

I hope everyone has as good of a Thursday as they can! I have been busy the last few days and may have a hard time catching up on all the new stories. I am so sorry to hear of surgical complications and troubles. I wish that everyone gets well soon.

Hope everyone is having a good day today! You have all inspired me to start doing a bit of research - as I have been avoiding the internet like the plague since my diagnosis. But I know I need to be informed in order to make sure I ask all the right questions and make all the right decisions. I'm curious - those of you who have opted for mastectomies - were you able to get the skin sparing option, or you got that football shaped scar? I put in a call to my surgeon to see if this is an option for me, but wanted to hear other experiences from folks here. I'm also curious about the nipple/areola tatoo/resconstruction options you've chosen and how those have worked out for you. Thanks!

Thank you for everyone's input, I'll have to d oa lot of research for chemo now.

ramols-I got the nipple sparing and skin sparing kind, and I'm very happy with the outcome. Its just that I don't have feeling in my nipples and about 1 1/2 inches outwards from the nipples. My surgeon said some feelings will come back but it will take time but not all of it and it'll never be the same, but I'm still happy with it.