2012 sisters
Comments
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Ohsoconfused- Each cancer is different. All I can tell you is that my surgeon and my oncologist sometimes gave conflicting information. If it was something specific to treating the cancer I always listened to my oncologist. Sometimes my surgeon would say things off the cuff and my oncologist would totally disagree. How many chemo treatments did you do? When did you have surgery? How many AC? How many Taxol? Just keep asking your doctor lots of questions. I actually scheduled my own appointment with my oncologist after my first surgery because I was so confused about so many things and needed peace of mind. I had a whole page of questions. If your oncologist isn't explaining the why behind the treatments then keep questioning or find someone who does answer your questions. Taxol made me so sore. I didn't like it at all.
jpmom-So glad things went well today and I'm glad you're not as sore. I felt so much better after re-excision because of no lymph node involvement. I am praying for a good path report.
soya-You inspired me and I walked last night for about 30 minutes!!! Baby steps!
tpoly-You should feel pretty good next week. I loved my "no treatment weeks". I felt so normal and energetic!!!
My wound vac arrived this morning via UPS. I went to my surgeon's this afternoon and he set me up! Its not pretty. The drain is like a post surgical drain but much more powerful because its hooked to a vac with a motor. Its a long tube and sticks out from under my shirt. You can see the blood moving through it! Its kind of gross. I wish it was winter. I would wear a long heavy coat to cover it up. But there's no covering this up and I have to live my life. I'm going to venture to the grocery store tonight and count the number of weird looks I get. Wish me luck!!! People who stare suck!!!
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@ chrissera: I do know how you feel. We all do. It is not a fun thing to go through at all. Please try to get outside and enjoy that weather! Sunshine heals in sooo many ways! Even if it is not for anything other than sitting in a chair in the sunlight while you rest. Also, please make sure you are drinking plenty of fluids. The sooner you can flush some of the chemical out, the sooner you will feel better. (It worked for me anyway)
Luckily, my children are grown. However, I did have a good cry with my daughter (she is now 25). We went through the usual "This isn't fair", "Why me", etc... I think she needed the cry as much as I did. I hadn't let myself until then. Afterwards, I told her that I have faith and God will see me through this. I am the first on either side of my family to be diagnosed with BC. I hope I am the last.
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Tina, that sucks! And I mean that figuratively, even though it does suck literally LOL! You need to use a version of Lago's Mother ship communicator (her response if people stare ER her port) , maybe, its for the alien who's visiting. LOL you will get through it too.
And, Chissera, I am glad your daughter understands. BTW, I loved lemons when my taste buds changed, but couldn't stand vinegar. Much love -
tina_jason: I guess that is why I am so confused. Each cancer is different. I was very lucky that mine was confined to the breast and luckier yet that I did not have to undergo a mastectomy. My primary care physician (a male) said if his wife was diagnosed with breast cancer, he would advise her to have both breasts removed as soon as possible. I think that is more than a little radical, but that is my opinion.
I went through 4 AC treatments prior to surgery. They were not too bad for me. Like I said, I drank a ton of orange juice. Was able to "deny" that I had cancer for the most part until 3 weeks after my first chemo and all of my hair fell out. I still haven't told most of my friends and family as I don't want the extra attention. I was still able to go camping and start my garden. Then, after surgery, I was scheduled for 4 Taxol treatments. I had my last one last Monday. I am told that most people don't have the severe side effects that I have with that one, but I was very angry that my oncologist didn't warn me about any of them.
After the first Taxol, I did get a second opinion because the idea of 16 more months of treatment for something that was borderline to begin with was unfathomable. When I asked my oncologist, he seemed to take offense that I was questioning him and told me it is like "insurance" and he "is not picking on me - it is standard procedure". He staged my cancer as a stage 3.
The oncologist that provided the second opinion actually sat down with me for quite some time and explained things to me. He is the one that also advised that "normally" I would go through 6 weeks of radiation. He reviewed my records and said he would stage me at a IIb. I liked those odds better
Unfortunately, that onc is three hours away and not easily accessible.Everything I have gone through so far seems so much easier than what some of you are undergoing. I feel guilty even asking any of you for information.
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Ohso, don't feel guilty! We earned the experience and information the hard Way, its nice to be able to use it to help others.
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Ohso, don't feel guilty! We earned the experience and information the hard Way, its nice to be able to use it to help others.
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Ohsoconfused-
So sorry u have been thru so much. These ladies ate great for advice and experience. Good luck. Thoughts and prayers to everyone this week. Seems like alot of firsts. I got my brca back. It was negative !!! My second biopsy came back as fibroid??? Schedule for surgery sept 28. ?? Is that normal to have to wait that long. ?? -
tina_jason... you have given me the strength to go out grocery shopping also... dont have the vac but have 2 drains... wearing DH's oversized (on me) shirts to cover tubes and drains - left still a 36D, right...not even a man boob
Nurse Navigator said I was OK to go out if I wanted.
Never feel guilty ohso....none of this is easy. And yes Moonflwer... isn't it lovely to pay forward the advice we received in the beginning.... even if its only to have a calming influence.
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Tazzy, yes, but I didn't need to say it twice, LOL!
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Dakota: (I love the name).. is it possible that they are waiting so long because it is not dangerous? Congratulations on the BRCA results!
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Well today is 6 months from the day I received my diagnosis. Waiting for my 6 month mamogram (8/22) and follow up with the ro (8/23) I have several new bumps/lumps/cysts on my breast so I'm pretty nervous. Do you suppose I'll faint if I hold my breath from now until then?
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Ohsoconfused -
I have no clue but I finally have a plan and it takes 6 weeks. I feel like maybe there is no lymphnodes involvement now but will be in 6 weeks. My bs said I was a grade 2, but because of the Ki67,?!? Don't really understand that.. But that I was more a grade 3.... -
chrissera-Sorry about your chemo and about not being able to do over your DD's room. It's so sweet of her to want to give you her babysitting money. Hope that everything works out in the end. Hate this cancer!!!!
tina_jason-Yayyyyyy for walking 30mins, baby steps will do it!!!!! Soon you will be more active and loving it! I know I do! Was in the gym today and started back doing weights and it feels so good.
ohsoconfused-Just wondering if you are still doing herceptin? With your 2nd opinion, did they retest you on your receptor status? I think you need to ask a lot of questions, especially if they're not sure about your HER2 status. I've seen 2 Medical Oncologists (MOs) and since I'm triple positive, according to the standard of care I should be doing Tamoxifen and chemo with herceptin. I've decided after all my detailed research in my diagnosis, I'm not goingto do chemo. I'm doing tamoxifen and herceptin.Since I do not live in the US, I do not need to be in a clinical trial for doing herceptin alone. I'm a little bit confused as to why you're doing 52 weekly herceptin. The norm is doing herceptin once every 3 weeks for a year, so that would be 17 in all. What is your final treatment after now after your 2nd opinion? You're doing radiation and herceptin? Are you done with chemo you were recommended to do after the surgery?
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Soyaandpepp... I haven't started Herceptin yet. When I left the MO on Monday (after my last Taxol IV), they said they wanted to start the Herceptin in two weeks. He said he didn't feel like I needed radiation after all, but then decided to send my records to the Radiation first. When the nurse realized the MO had given me a prescription for blood work that has not included Cancer markers for the last four months, she became upset. Said I need to have blood work done again before I start Herceptin. However, nothing will be scheduled until after I see the RO.
I was scheduled for tomorrow a.m., but the RO called me this morning and rescheduled for next week - says he doesn't normally start radiation until two weeks after chemo is finished. He looked over my records (I think - he initially had me confused with another patient) and said I will need to go in 5 days a week for 6-1/2 weeks. I won't start the Herceptin until after the radiation, I guess.
I am really concerned about the radiation. Other than blood tests that show I have been able to keep my red and white cells in perfect center, there have been no other tests. Do I just have a really bad oncologist?
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Dakota, Mine was biopsied in Dec. Had to have chemo to reduce the size. There was no initial lymph node involvement and after surgery, when they did test the lymphnodes, I had one sentinel node with a "couple of microscopic" cells - they had not banded together to make another tumor.
Do not fear that they will be there later. Keep your head up and tell yourself that it hasn't spread. I know that is easier said than done. However, you need to live your life to the fullest. Do not worry about what "may" be there. Just concentrate on knowing that what "Is" there won't be when they are done.
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Teeball- thank you so much for your post about what your social worker said. I have been down for a few days and it helped.
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Moonflwr- Hee hee! It does "suck"! I love to laugh at all of this crap! If I don't laugh I cry and I would rather laugh!
Ohsoconfused- You've been through a lot already. Don't ever feel guilty. We're all in this together. When I first started on these blogs we were talking about how our treatments are a crapshoot. We make the best decisions that we can with the help of our doctors and the information we find out on our own. Sometimes it works exactly the way its supposed to and sometimes there are complications. But we keep trying and trusting our doctors to help us make the right decisions. My goal has been to stay informed and to ask lots of questions. I've also become a nag and call the doctors when something isn't right. No one is going to care about our health as much as we do so its our job to stay proactive and kick this nasty disease in the butt!
Tazzy- I'm glad I inspired you to get to the store!
Good night girls!
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Ohconfused-
I know it just sux, EVEYTHING about it sux, the unknowns sux. I plan everything I am so type A, and it sux not to be able to plan anything. I am trying very hard to be positive for my kids and "pretend" nothing is wrong, and say god willing everything will be fine. It's hard. My nephew past away last month and one of his tweets a couple days before his accident was "You're here, you're alive, be happy. " trying to live by that. Thanks everyone
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Love reading everybody's posts,need it to keep my spirits up. 2nd AC tx in BGC yesterday,next i go to get neulasta shot today.Acyually feel ok except for a headache. Dreading the nuelasta shot. Thanks everyone for all the experiences and the feedback posted here,so informative. You all inspire me!
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Welcome new fighters. Wish you didn't have to fight this fight but we are here for you. I am one day post op from my re do lumpectomy. I am sore and didn't sleep all that well but I can tell this will not be so hard to recover from as the first surgery. Getting the fluid drained off the AND seroma has helped a lot too. I am anxiously waiting for the path results. I should find out what it shows later today.
Ohsoconfused I am confused reading your story too. Your mo seems to change his/her mind a lot and that statement about not needing surgery seemed very odd. I am of course glad you got the surgery. I am glad that you got a second opinion. It sounds like the second opinion basically goes along with your MOs recommendations. This is a confusing process at best but you have had an even more confusing course. Good luck with everything!
Fishinurse, the Neulasta want so bad it just made me achey. Tylenol worked fine for me but a lot of people are taking Claritin for it too, maybe they can elaborate. But the symptoms from that were short lived.
Too sore for much of a walk today, so instead I get to go to the dentist. Yippee!
Best wishes to those in the BGC today! -
Jpmom-
Glad to hear this one is easier for u!! The dentist huh, sounds like fun after yesterday. Happy thought and good vibes for ur path report !! Hope everyone is having a ache free day. -
jpmomof3-What do you know! I went to the dentist just half an hour ago! I got a tooth extracted and a filling done. It was nothing compare to the surgery we had to go through, I used to have anxiety going to the dentist, just for fillings, now its like nothing. Still I started antiboitics yesterday to prevent infection to my implants. Soup for me today and veg juice!!!
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Jpmomof3, I so wish you very good news on your path report! Your posts show that you are a true warrior indeed. So glad that seroma is better, and that you are recovering well.
Tazzy and Tina, so glad you don't let the drains etc. stop you from shopping. I did the same, and it felt soooooo good just to do something that felt normal again. Lived with my drain for three weeks, emptying and recording fluid amounts on a chart . . . ugh.
Ohsoconfused, I hope you can get this sorted out. Welcome here - we are here to listen, and to support you.
Everybody else who is doing chemo, hang in there. This too shall pass. May the chemo kill, kill, kill every single cancer cell on sight! I know it doesn't really work like that, but it helped to get me into a positive, fighting spirit every time I had chemo. Hugs and good wishes to all of you!
Yesterday I read something on one of these forums which will now become my new motto: Don't worry until you have something to worry about. Aren't those the wisest words ever? It inspired me, and makes such a lot of sense. I am going to try and live like that, because I have always been an easygoing person, and that's how I lived before cancer. Time is just too precious to waste on worrying that accomplishes nothing except to make you feel bad. Here's to life!
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Iiefie-
Cheers to that !!! -
Soyaandpepper I think I read that most people have dentist anxiety so it's nice to know that other than killing our cancers, that there is another upside to all we've been thru- we will no longer fear the dentist. I'm sure before BC a dental extraction would have been high on both your anxiety and pain list before so I'm glad now it was like nothing. Enjoy you soup and vege juice and get better. The way you've been working out you don't want to take time off again or those abs, etc will be getting soft! lol I need to work on my willpower then hope it gets me back to the gym.
tina_jason Do you have your "camera bag" (as my husband called his) all hooked up? It's interesting to watch when it's pumping stuff thru the hoses isn't it? Makes you feel more like it's working.
Cindyl I don't suggest you hold your breath until your appointments and tests lol I decided to have a mastectomy but afterwards the pathology showed tons of b9 lumps and cysts as well as some adh on both sides. (The bad stuff had already been removed in my lumpectomies) but my BS said they were all B9 but they probably would have caused me alot of anxiety come test time. You probably have no reason to worry; your lumps and bumps are probably the same -just B9 things.Thats how I felt waiting and going to my MO for bloodtest results the other day but as I said in an earlier post, thank goodness I worried for nothing. Even though we've been thru our diagnosis and treatment a while the waiting and anxiety continues does't it? Hopefully it will pass as we get further down the road. Like Soya said though now she isn't afraid of other things like going to the dentist!
To all the newcomers, so sorry you had to join us.
Hope all those in the BGC are doing ok and have minimal SE's. Thinking about you all.
Tazzy Wonder if the Dr's do talk about our answers and comments to their questions when discussing our treatments, etc. If so the others will probably tell my MO to refer me to a shrink next time. lol Any estimate on when your drains will be coming out? Yea you have to work around those things and get out otherwise you might find yourself in the house for several weeks. I had mine a good 3 weeks or more but I adjusted my shirts (wore big shirts and tied a knot in the bottom at the waist to hide the bulk) and threw some pillow batting in and was out shopping 2 days after I got home then eating lunch out with friends 4 days later- the power of food! It gets me out no matter what! Sounds like you are feeling pretty good though-hope so.
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I didn't know about the CA at all for the 5-7 years they said my cancer had been growing in me. Know what it would have changed if I did? Nothing. It didn't show in any previous blood work. Not on any mammogram. Nowhere. So why am I worryiing about the next 7. If anything I will know sooner, not later as with this DX. Yes I need to be concerned about what I eat and exercising, etc., but I was concerned about that already; just upping the awareness now. And that's thinking and acting, not worrying. So good advice. I'm sure I will need to remind myself of that on a fairly regular basis for awhile, but very sage advice I will be taking nonetheless.
Worry never robs tomorrow of it's sorrow, it only saps today of it's joy. Mahatma Gandhi
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At hospital for port insertion....this is becoming way to REAL!!! Someone make it stop!! :'-(
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2friedeggs
Good to hear from you. And I agree
Cindyl- please don't hold ur breath. Lol
Tina-Jason - hope the "camera bag" is working well
Thanks to all those girls who r getting up and moving whatever the motivation is!!!
Happy Thursday everyone !! -
Juneau -
Good luck everyone is here for ya -
juneaubugg-Hang in there! It'll all be over soon! Sending you positive vibes!!!
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