September 2013 Chemo Group

Hey everyone! I guess it is MUGA time for a lot of us. I had mine on Monday but haven't heard the results yet. I am a bit worried about it because I have been having elevated heart rate to the point that they said to go back on the heart meds they had taken me off of before. I also get winded pretty easy but who knows if that is just chemo.

Went to the surgeon yesterday...I think I am more lost than I was. It was a rather depressing and frustrating visit. Bad news and I had thought I knew what I wanted but am back at square one now. Even though neither she nor I could feel my tumor anymore, she found it on ultrasound-measuring at .78cm! It has shrunk for sure, but I really thought it was gone or at least anywhere near that big. That is super scary that neither of us can feel it too. She also informed me that if there is cancer found in my lymph nodes I have to have radiation. I thought the radiation issue was a lumpectomy versus mastectomy issue only. I really really really didn't want to do rads. So, instead of going straight into the mastectomy, she wants to do a sentinel LNB and a lumpectomy first. She said that she can get a better cut and margins on the tumor going straight in that way rather than at the angle she has to take to do a mastectomy through the nipple. She said that even I decide to go ahead with the mastectomy it is better to radiate breast tissue before removal because it helps to give a better cosmetic outcome as most of the damaged tissue is removed? Something like that; I don't know I was pretty full up of info by that point. She said that there is only a 2% difference in a reoccurance of the same cancer with a lumpectomy and radiation versus a mastectomy and no radiation. She did say that I have a 15-20% chance of a NEW cancer, however. My sister and I understood this differently. I thought she meant just in breast tissue, my sister thought she meant anywhere in the body (which a mastectomy would make no difference). I put in a call to have her claify this. To me, it seems I see SO MANY women just on this site that have had a lumpectomy and then new/reoccurring cancer that the number HAS to be higher than that. I mean, if there are that many women just on here.... My reconstruction options are also limited. She can't say 100% for sure because she doesn't do plastic, but she thought I would have some kind of lifting restriction with expanders/implants because they are under the pec muscle. My son is already 63 pounds and isn't getting any smaller so that isn't an option. I had considered the DIEP procedure before but had kind of counted it out because of the extensive healing time (and the massive tummy scar) but it is looking like that may be my only option. This also means that I will have to go 4 hours away to have the surgery done and there is a 3 month wait time to even get in for a consult. BLAH!!! I am so very lost and confuse. I would like to spare myself the pain/heartache/recovery/lifetime issues of a mastectomy but I just FEEL like it is the right choice. I don't know... I am generally indecisive and suck at making decisions so this is purely agonizing.

I am all for a party!! I am going to have to ask my onc when I can drink lol. I am certainly going out and having a few drinks when this is all over. I already made an event on Facebook and invited my friends. It is called "Farewell party for my breasts" lol. My last chemo is December 18--- 27 days, 23 hours and 23 minutes from now -I have a ticker on my phone

She said she absolutely is not trying to talk me out of a bilateral mx. She actually said that she would lean to doing that because of my age (33) if nothing else I am at a high risk for reoccurance. She wants to do the lumpectomy with the LN biopsy because she thinks I will have clearer margins because she will go straight through the skin, and take the skin, whereas if they do a mastectomy they will be going in at an angle through the nipple (my tumor is at about 3:00 on my left breast but about as far back as possible without going into my armpit area). Does that make sense? She said it would make more sense if you have ever done surgery. I don't know if I have enough belly fat, but she said she thought I would be a good candidate if I did. She doesn't do plastic surgery and she was very straight forward about what she didn't know. She was also all for me having the DEIP procedure and set me up an appointment with that doctor even though it means that she will lose me as a patient for my mastectomy (I will have to go to 4 hours away for the DEIP) I really like her and trust her.

Colorado is out of the question for me. That is 8 hours from me. I am not even sure how I am going to arrange a 4 hour trip, especially if I am going to have to in the hospital for up to a week as with the DEIP. That would mean two trips for whomever is driving me. At least if I go to KC, I actually have someone who is halfway in between and I know she would be willing to take me and bring me back home. However, the PS here in town that she set me up does the best nipples ever, in her opinion. I checked out his book and was very impressed.

I think so...some kinds anyway. I have done some research on reconstruction but not a lot...or maybe too much lol. I think they can sometimes go direct to implant if you have a skin-sparing BMX done. the DIEP flap is immediate. It is also a one step procedure except for any contouring you may need done later just to fine tune things. I really don't understand the expanders though. I know that they do breast augmentation subpectorally and don't need to do an expander. Why do they have to do one if you have a BMX done? It is the same basic procedure isn't it? They are just putting the implant behind the pec muscle.

mamastewart-

the expanders stretch the muscle and hold skin from shrinking- you can do direct implants but more painful as not gradual stretching- and dr hates to decide size with expanders they expand them to size you want then just replace them in outpatient procedure...

and I went home after a week but was exhausted and had some pain that first week didnt feel better til the 3rd week so you would def need to stay somewhere..glad you have someone mid way point.. It is hard going out of state but was perfect for me as I trusted Jeremy and everything he recommends, I needed that as I was a mess and didn't know any drs in area- I live by dallas and there are too many to pick from...made it harder

babyruth- that is awful about reoccurences! that is what worries me the most!

I get scared every dr phone call and every scan since this- I need to get over and deal with it emotionally but I wonder how?? Does the worry ever go away? Did your dr say why you got reoccurences or just no one knows thing?

I admire you and all you have been through - I thought I was a strong person and this has made me feel like a little baby..

you are awesome!

MamaS-I think the reason they can't put implants over the muscle is that the MX takes out all the tissue so they would just fall down. When you just get implants as an enhancement, you have some tissue to work with.

One thing I was thinking the other day (new topic) - I had found a lot since I turned 40 that doctors would say "now at your age, you need this test...." making me feel old. In the cancer world, it's the opposite..."because of your young age...." I guess I'll call that my positive for the day.

Babyruth-

You will be in my prayers for sure. Praying for clear and negative scans for you!

I still have not showered (very unlike me) and am exhausted...maybe dehydrated? Trying to drink and had a boost chocolate thing as I hadn't eaten lunch, just laid on couch all day...this is like a bad flu...have to get going and get my blood checked..

my husband is on his way home to rescue me...:)

I won't be finished til NEXT September!!!!!!!!!!!!!!!!!! A full year!

VintageGal

MamaStewart- it's a very hard decision. My Dr wanted to do only my left side. I am a worry wart, and asked to have both removed, doesn't mean there won't be any recurrence, but I pray there won't. I don't want to go thru all this again or put my family thru it. Will be praying for you. When I made my decision I felt relief, but I went back and forth with my decision for a while.

Oh sorry, you were asking the opposite question of what I tried to answer...I have no idea why someone would mess with their muscles if they didn't need to. Ironically, I am one of the few in my friend group that has never even given thought to electively altering my boobs - either bigger or smaller or perkier. And now I have to figure all this out.

I really feel like my gut feeling is telling me they need to be gone, even though I hate the thought of the long recovery and multiple surgeries.

BabyRuth, You have thoughts and prayers headed your way from Washington State. 

LHL - I will be thinking of you tomorrow and in the evening...ONLY ONE MORE!!!

Mamastewart, I know your decision dilemma.  I didn't do chemo first so had the surgery decsion right after diagnosis.  And I am glad because at the time all I wanted was for it to be out!  But at least you know chemo is working for you - that should remove the possibility that you did it for nothing.  It's a tough decision.  Maybe going with your doc recommendation of the SNB and lumpectomy will allow you to see the outcome (rads or no and how you feel anxiety wise).  Then if you still feel anxiety or other outcome of surgery then you can schedule a BMX.  You can always go Lump to MX but not back.  That's the way I thought about it.  I really wanted to preserve my right breast (for my totally not eyes on the ball idea of future breastfeeding) and I am a DD cup size so no way a UMX would work (without reduction on the right).  I thought if while during this process I either came back as genertically pre-disposed or as time went by I could think more thoroughly, then I would have a BMX before rads (or after depending on plastic surgeon opinion).  It was just too much of a decision too quick so I took the option that allowed me a further option.  And honestly, I have been thinking a lot of the anxiety factor and as this is such a personal decision - just my inner feeling is that I really like my body parts and if I don't have to remove them I want to keep them (if I had to I would).   I like that I still feel like me - my clothes still fit and I do, however remote, have the chance at breastfeeding.  Just a tough one and there is no other feeling after you do your research than that of your gut telling you what you can stand.  For what it is worth I was able to pick up my 30lb child in 2 weeks after ALND and lumpectomy but probably a month before I would be picking up 60 pounds.  However, I was back at work and doing other normal activities in 5 days.  And not that this needs to be said but remember that surgeries are not risk free either.  And there are also risks on the follow up scans needed for lumpectomy.  It is such a big decision - I went back and forth a lot.  I wouldn't judge reoccurance rates based on data from this site - maybe the women who had lumpectomies with no reoccurances just don't post here anymore?  The scientific data seems to show an about equal rate of reoccurance between MX and Lump with rads.  My recollection was about a 2-3% difference - but stats have become inconsequential to me so I just try my best and then have faith.  Not easy!  So glad you were not alone at that apt - seemed emotionally crushing.  You are so strong and all that you are doing - I think of you a lot and wish you strength.

One more thing, I'm chatty Cathy tonight!

I read all my reports on my drive to the genetic counselor - my path report said 1% of cells showed staining for ER. So basically I'm pretty much a triple negative yet they're going to give me tamoxifin "to be safe." Double whammy. GREAT@@ Still waiting to hear if insurance will pay for the test.

Post as soon as you hear BabyRuth, will be praying for good news.

So I am 7 days out of Chemo. Doing good this round other than the 1st few days when everything hit at once. Yuk mouth is a little diff this time. It is all on my lower tongue where I can't do anything for it. Gargling doesn't reach where it is. SIGH. Miss food like mad, still. Everything still tastes bad. I cannot stomach the taste of bread or toast, however I can eat eggo waffles with an egg on it. Red meat is out of the question as well as chicken. So I had some spinach to boost my iron & 1/2 banana for potassium. Mostly eating jello with no taste. Oh & yes that nasty itchy rash! It is larger & itchier than ever!

Getting ready for Rads. RO gave me NO info. Can't use any cream or lotions. Can't use deodorant even alum free. They will be doing breast only. That is all I know. They gave me 3 tattoos the size of a speck of dust.

Hugs to all that need them. Good luck to all at the bar today. If anyone finishing Congrats.

Day 7 post chemo: Feeling like complete crap this morning. Been up since 3am. Not tired. Stomach & digestive system just not feeling well. Sipping gingerale with ice to keep hydrated. Taking temp every hour just to be on safe side. It is bed & tv for me today. Hugs to all.

70 Charger, I love my rad onc and she really took the time to explain and recommend things to me.  I hope this helps you.  She siad the best cream is pure Aloe.  I asked about a zillion others that I had been recommended and she stuck with Aloe.  My naturopath recommended Emu Oil but it is harder to get and more expensive than aloe.  My rad onc just said aloe after every lotion I asked about She said do not apply any lotion in the hours before radiation but afterwards, at night, and maybe in the morning depending on time of rad apt. Basically do not have it on the boob at apt.  She agreed no deoderant - natural or otherwise.  She recommended sleeping in a bra (I am large chested) as the movement and rubbing may get uncomfortable over time.  She said that larger women have to have a stronger rad beam in order to penetrate whole breast than smaller cupped women (therefore I am at a higher liklihood to get the rad 'burn').  But she said that the 'burn' doesn't usually develop until later in the treatment and then stays for up to a month after the last apt.  That was kind of disappointing to me as when it is done I want it done! However, she also said that getting the burn is based on more than just the rad beam - also on your skin's condition and genetics.  Every woman's body reacts differently to the rad.  The other short term side effects that she emphasized are fatigue (no joke an apt every single day!) and a zingy kind of chest pain across the pectoral muscle.  She said sometimes that pain lasts a long time but as usual different for everyone.  That was kind of disappointing to me as when it is done I want it done! Hope that helps!