August 2014 Surgery

Couture, Sunflowercat in her two posts on that second page she linked gave a clear explanation of why she opted for the BMX, how it affected her, and a load of excellent questions to ask surgeon, once that basic decision to do the BMX has been made.    I get the impression from your two questions on the subject that you are still struggling with the basic should I or shouldn't I issue.    Since I did not have a BMX, preventative or otherwise,  or even a mastectomy, and my cancer came at a much older age than yours did, my immediate thought was that the only appropriate response that I could give to your panic post would just be to say that I strongly hope that your visit goes well, and that you get the answers to all your questions and they can help you to make the decision that is best for you.    (And of course, that IS the first thing I want to say to you!)     But then I realized that you said your appointment is TOMORROW (which now, actually means TODAY) and you need input quickly, and so  I've decided to burst in where I don't really belong and say what I would ask docs if I felt I were in your situation, even if I'm likely saying obvious stuff that you're already planning to ask or perhaps already know the answer to.          Forgive me if I'm posting non-helpful nonsense.    

1) Should I get genetic testing for the BRCA genes and other genes linked to bc to see if there is a genetic reason that might make me particularly likely to get a second primary breast cancer?    If yes, where do I need to go to get that done?    

2)  If my genetic testing results comes back negative, should I have anyway a genetic counselor evauate my family bc history to see if it seems likely that there is some other genetic component that contributed to my cancer, and which could make me more likely than the average bc patient to get a second primary breast cancer?    

3) Does the fact that my tumor arrived at such a young age suggest all by itself that there is something about me, genetic or otherwise, that makes me particulary susceptible to cancer, and could make my probability of getting a second primary cancer greater than that of the average cancer patient?

4)  Is there something about the type of breast cancer I have just now been operated for, and/or it's characteristics, as shown by the pathology report and the clinical presentation of my cancer, that suggest that I have an even bigger probability of getting a second primary cancer than do most breast cancer patients?    

5) What are the statistics of the probability of getting a second primary breast cancer for someone whose first tumor has the characteristics mine had, and which presents itself at the very early age mine did?   (with and without a genetic predisposition)

6)   How would my overall risk of metastatic cancer compare between getting the BMX or leaving my surgery as only the lumpectomy, assuming that if I do not do the BMX I get yearly MRI in addition to the ultrasound and mammogram, to have best possibility of detecting any new breast tumor at it's very earliest stage?       Do you feel that I am safer just getting rid of my breasts,  or would you say that as long as I do frequent checks using the most sensitive methods, I've got such a very high probability of catcing any new cancer before  it has a chance to metastasize that the "protection" ability of either option can be considered equal?   (How do you feel about MRI as a screening option for people with a breast cancer history?     Do you feel that MRI gives so many false positives, that end up, upon biopsy to not be cancer after all, that it just introduces additional anxiety and fear and interventions that could be avoided?    If that's the case, if I do only yearly ultrasound and mammography and physical control, do you feel that I am allowing myself to be more at risk of an eventual metastatic cnacer than I would be if I did the PBMX?    

7) Does the type of cancer I have have a particularly high or low probability of re-presenting itself as a local reoccurence in the chest wall muscle also after mastectomy has been performed?   (or in skin if skin sparing mastectomy is done?)

8) Regardless of whether or not I choose to get the BMX, in your expert opinion, is the lumpectomy surgery I have had done sufficient by itself to maximally reduce my risk of any reoccurance, or would you have recommended radiation and / or some kind of drug therapy follow-up? Do you agree with my previous surgeon's choice to not do a Sentinel Node Biopsy on me? (Is the tumor type I had, at the stage it was operated, a type that simply never metastasizes to the nodes?)

9) I had tremendous pain after the lumpectomy, that is still ongoing now. Is this unusual? Might this suggest that there is something about me that reacts particularly badly to breast surgery and should I take this into account when deciding whether or not to do a PBMX? Can you offer to me solutions that should be able to help me with the pain more than what I did after my lumpectomy?

10) Even though I just recently saw my surgeon, and she gave me the all OK sign, Can you please just double check me to make sure that there is not something bad going on that could explain all this pain I'm having,(in the case that you feel that it has continued longer than should be expected?)

Can we compare scars?   Seriously, I haven't seen much improvement in my incision over the last couple of weeks, and I want to make sure I'm healing normally.  One small section is completely non-pink, but the rest is still pink...not pale scar-tissue pink, but this-isn't-healed-yet pink.  I still have a bit of stinging in the pit area.  I also have a couple of suture ends (I'm pretty certain) here and there.  One fell off the other day, but three or so are still hanging on.  I keep trying different creams, but I haven't yet found the one that magically makes it all better!

Does this seem normal for five weeks out? 

Milaandra, Damn, I wish at least the skin healing could go right for you!       As for the comparison, by now you know that I'm on the lucky side of the healing curve, (so maybe I'm not the best to compare to) but my scar, talking about only the skin aspect, just looks like a a long scratch now.    Aside from the thin line itself, which is dark red, the skin around the line just isn't all that altered in color.     The thin line itself is very visible, hasn't faded to that pale healed scar color, and, of course, it's got a hard thick bump in the tissue beneath it,  but it doesn't have a raw unhealed look.    No skin stinging at either incision.    Now, my surgery was a week before yours, but already a week ago it was pretty well healed, too.     And I don't have your super sensitive skin, which is surely delaying yor healing.     And since I didn't fill up with fluids, I guess I didn't have the stretching forces on my skin suture that many others had.   I never had the problem of internal sutures sticking out, and the external ones got taken out a long time ago.    (As for the creams, are you sure some of those creams aren't causing your sensitive surgical area to react with the consequence of an even slower healing?)    

**poking my head in to check on Ally**

Ally !!  Awesome news on the ALL-Clear!  **happy dancing for you**   

I just had robotic HX on 9/29,,, home recovering from that now. It wasn't nearly as bad as I thought it would be. They took it all, ovaries, tubes, uterus, cervix.  Surprise that I had some endometrosis, and the fibroids are gone (YAY) and everything was bee-nine!!

If you have any questions about HX,, feel free to PM me.  

glennie  (Bobo's friend)

How do you post a photo on here?

Milandra...above the body of your message there are icons ..roll your mouse over them to find the one that says "insert photo" 

Allydp..so glad your doing better also ! I am going to try pt ( I think ) but like you said why mess with a good thing. On the other hand I don't want my ps to think Im being non compliant, ugg. I definitely not running to pt..but the massges DO sound good !

Coutoure..hope everything went well for you today !

Couture, I'm sorry that the doc that saw you didn't  seem to be understanding of your concerns.    

Am I understanding  correctly that the cancer you were just operated for was of a type that was completely taken care of by surgery alone?   (I'm guessing small low grade DCIS or one of the rarer subtypes of IDC that when small don't need radio or drug treatment?)    And so this doc was proposing the Tamoxifen, not as a completion of the necessary therapy for the cancer you were just operated for, but as prevention of future cancers, because you are high risk??       I just now read that when Tamoxifen is given for prevention reasons, it is approved for use only for people above 35 years old.  ---So I guess that explains the have-your-kids-now-and-come-back-in-4-years thing?    

I think your concerns about potentially not finding a cancer that might appear during your pregnancy/lactating years until it's later stage are legitimate.    Just how much it increases your risk of a cancer being serious, I don't know.    You seem to be aware of the issues, but you may find some useful info here:

http://www.cancerscreening.nhs.uk/breastscreen/scr...

Did the DFCI doc give you an idea of what your risk of getting another cancer in the next 5 years might be?      I think having an estimate of your real risk would help you in making your decision, and from what I understand the oncos have algorithm tools for estimating those things, once you've got all the proper information to plug into it.      

Some things to consider when chosing between Tamoxifen prevention and PBMX:

The studies done so far (using tamoxifen as prevention, not to cure an existing ER+ cancer) seem to show about a 40% to 50% reduction in cancer risk by a five year treatment of Tamoxifen (So if you've got a 10% risk of getting cancer in the next five years,if you take the tamoxifen your risk might be reduced to a 5% or 6% risk.)      But note, that once your 5 years on the drug is over, during the next five years, the relative risk reduction was found to be only 25%.   And no studies have looked beyond five years after stopping the drug.           Also, important to keep in mind that Tamoxifen is going to reduce risk only of hormone sensitive cancers.       

http://www.cancer.org/cancer/breastcancer/moreinfo...

http://www.cancerresearchuk.org/about-us/cancer-ne...

Have you been tested to see if you have the BRCA genes?      People with BRCA1 tend to get cancers that are NOT hormone dependent.

As for the PBMX first, kids later option, I know we have people in this group who have had to deal with mastectomy healing while caring for young children (Lipglossmommie comes to mind, but I'm sure there are others too.)     Hopefully some of them are following the discussion and can tell you how they dealt with that.

As for your concerns about Tamoxofen treatment making you miserable, and that interfering with your abiity to take good care of your young kids, I want to make sure you understand that while Tamoxifen is sometimes referred to as "Chemoprevention", this is NOT one of those big bad awful knock you on your butt poison Chemo drugs.     Tamoxifen side effects are mainly to make you feel like you're going through Menopause (although you do continue to ovulate and need to be very careful to not get pregnant while on the drug, and birth control pills are off limits)   .    There are some women that react particularly badly to the drug, but most tolerate it OK.     (Although I can see how it's not a great thing to have to go through if you're just starting off a marriage.)    I'm sure people here can tell you about how they feel on that drug.   (I'm taking a different kind of hormonal therapy, with somewhat different side effects, since I'm post-menopausal).       Tamoxifen also can slightly increase your risk of endometrial cancers and stroke, but the risk is quite low.     

Of course, surgery can can cause some big unexpected health issues, too    Don't know if you'd be considering reconstruction or not, if you decide to go the surgery route.

Hopefully the women here will be able to give you lots of experience-based input, to help you make your decision.   

Couture sounds like the doctor gave you more question than answers. Do you have another appointment coming up. Is there someone else there that you can talk to.

Hoping that will get some peace soon.

Ganzgirl That note from onco is a HUGE SMILE!!!

Mil, for the pic, if you're computer incompetent like me,there are also instructions in the "Help" section you can open by clicking on HELP at bottom of the discussion page.     But those directions are a bit mixed up, and the icon you need to click on in the reply box is more a mountain-like image than a tree image as is shown in instructions.   Plus, it tells you that if you put photos in something like photobucket first, (and instructions seem to be telling you you must) that after clicking the "HTML code" option, you need to first click "Link" and then put it in box that says "Image web link".     But apparently, despite the instructions saying you need to put photos in photbucket first, you can also directly pick a photo that is in your computer, by choosing "chose file" (or something like that-- my button is written in Italian---)   Problem is, for me, those techniques still didn't work to load a pic!!     I kept getting just a tiny generic icon symbol icon loaded on and not the  real pic.      If you want the pic as your avatar, there is a maximum number of pixels the image can have, so if it's not a super low definition photo, you may have to trim it and just put a part of the pic.     That worked for me for posting avatar.     (To put avatar it's a whole different procedure--- You need to go to  "My profile, then Settings, then find the part where it lets you add avatar, chose file (from your computer, not a photobucket website) and press save.)     I haven't tried yet to see if trimming the pic to be smaller would solve the problem I was having to load just a regular   pic within the post, like Ganzgirl did.     The instructions don't mention any size limit for those pictures, so I don't know if a too big size was the problem I was having or not.   (My pics were just normal ordinary point and shoot camera pics- although maybe I did have camera set on highest definition (even though the pic came out  blurry anyway...)   

(By the way, the pic I put as my avatar is of that tension-cleansing waterfall I told you about, even though I realize that with the pic so small, no-one can really tell what it is!!   And, believe it or not, I'm there too, hehe, under the water spray)

Imheretoo and Mill, 

We hope you managed to get your photos up. If you still need help with this feel free to private message us and we will try to help.

We are currently updating our help section and will have more clear and detailed instructions on posting photos. 

The mods

Couture, I totally agree with Milaandra and Ganzgirl about the importance of having some sort of data-based prediction of your true personal risk of reoccurence (or occurence, in the case that you were operated for a pre-cancerous condition) and putting those numbers in perspective with other real life risks, and the cancer risk of the general population, and just how much any of your considered options would change things (as well as the probability that those prevention techniques could cause you serious health issues) before making a decision on whether to adopt surgery or drugs as a prevention strategy or just trying, for now, at least, to adopt lifestyle changes that can reduce your risk.     Yes, it's true, population statistics are just statistics, and if you happen to end up on the bad side of the curve, you're 100% there, but having a realistic view of your likelhood of ending up there is very important.    

(BTW, regardless of what you decide to do, and especially since the doc is suggesting that you just chill for these next 4 years, I'd suggest you take a serious study of all the breast cancer-feeding stuff you might be exposing yourself to without knowing it.   I thought, being a rather low fat Vegan, there wasn't all that much I could change to have a healthier lifestyle (except be more careful about all those pesticide soaked veggies, and get more sun or other sourced Vit D) and then I realized that in addition to pesticides, I'd been gobbling down synthetic estrogens every time I ate and  drank and even when I brush my teeth!   It's thought that the synthetic stuff, since it's more difficult for your body to break down,  may build up in your body tissues, and especially in the fat of breast tissue.)   (I foolishly made my tea every day in a plastic mug that I heated in the microwave, drank and cooked with only natural spring-collected mineral water that I'd stored in plastic bottles that I constantly refilled and re-used,  I depended heavily on the convenience of canned beans that I added to all my fresh cooked veggie meals, used a toothpaste containing triclosan, and brushed for a looooooooong time--- turns out all that stuff contains synthetic estrogens.    So do cash register receipts (good grief!) so maybe we even need to think twice about using re-cycled toilet paper since so many people don't know not to recycle those?   getting way off topic, I guess!       (My perhaps foolish fantasy of the moment is that once I've finished treating (hopefully completely...) the sweet little cancer I've got now, by doing everything prescribed, that my probability of getting another one might be reduced once I've washed that stuff out of my system--- well--- maybe----    (I don't have any reason to believe I've got a genetic predisposition though).    All that stuff doesn't really have anything to do with the conversation at hand,and even less to do with surgery,  I guess, but just thought I'd throw it out as a conversation topic among friends.

As a great gobbler of cabbage, broccoli, cauliflower and the like, I found Milaandra's mention of indole-3 carbinole interesting.  (although it looks like normal food levels may not really be helpful...boohoo)   

http://www.mskcc.org/cancer-care/herb/indole-3-car...

http://lpi.oregonstate.edu/infocenter/phytochemica...

Had my chemo class yesterday afternoon.  The PA was really nice and pleasant.  All in all, I only learned a thing or two from yesterday.  I learned the most from reading through the forums on www.breastcancer.org.

I get my port put in on Monday, 10/13 and chemo on Friday, 10/17.  Sometimes I get a bit teary when I think about chemo for six months, but then I just tell myself why I am doing it and try to think about something else.  My husband is going with me the first time and then we will see after that.  Who knows?  Maybe I will just take the rest of the treatments by myself and use them as "me" time.

Even though they don't think I will lose my hair, I am going to get it cut this weekend.  My hair is normally pretty short, but I am going tell my stylist to go a bit shorter.  The PA and the MO said they think my hair will thin, but should really lose it.  We'll see.

Thank you ladies for listening and for your support.

I hope everyone is doing well and recovering nicely. 

hey ladies! 

Thank you all so much for the support and well wishes. I took a few days to digest the info and am trying to focus on living day to day. 

I'm waiting to her from DFCI about my next appointment. I'm stressed about the choices I have and have been suffering from more panic attacks since Friday. I took down all the well wishes cards and get well cards yesterday and put them in a special box... Maybe daily reminders need a break. I need to clear my head. We are heading on a romantic getaway weekend this weekend so I'm focusing on that. 

I did the 5 mile ACS breast cancer walk on Sunday! It was hard but fun. By mile 2 I needed a pain pill but I did push through and finish. It was the first time I've worn any sort of bra since my surgery and I took it off half way through bc it was guaging my scar, and now it's red and has a bruise ;(  I raised over 1400$ for the walk and completed it so I'm not going to complain! 

So gals, any tips for living in the moment? 

I'll update you all when I hear back from DFCI!

Xoxo

good luck tomorrow! You'll be in our thoughts and prayers for sure! 

Good luck bobo !