2010 Sisters
Comments
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Panmars- I am sorry about your ovarian cysts. That must be painful and frightening. I would also wonder if it is Tamoxifen related. If you continue to run a fever, please insist on being seen soon. I don't know if you are into supplements or alternative strategies, but there seems to be a lot of evidence that iodine supplementation helps clear both breast and ovarian cysts, and also may prevent BC recurrence. I have been taking iodine for about 6 months and feel fabulous. Just google "ovarian cysts+iodiine". I learned a lot at this site: www.breastcancerchoices.com Be prepared, your traditional doctor will dismiss all this, but I believe it has it's place along with tradtitional medicine. Best of luck!
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Thanks DesignerMom, I'll check it out. I am feeling much better now, fever is gone, still some pain, but my OBGYN thinks it's probably from a few blood clots around the rupture. Yuck. Hopefully the cyst on the other one won't rupture like this last one. I'll be having another ultrasound in 8 weeks, so hopefully everything will be gone by then. Doc thinks they are just ovulation cysts, not something more sinister, so that's good, but she agreed it's probably from the tamoxifen. I figured. Anyway, thanks for the support everyone! You guys are the best!
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Panmars - glad you are feeling better. Praying everything turns out fine for you. Hope your doctor's opinion is 100% correct. Do research the iodine supplementation that DM talked about. She is a research nut and has lots of good information.
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Designer Mom--how are you taking the iodine? Is it something that a doctor has to prescribe? Did you have to okay with your doctor? You have my curiosity peaked...
Thanks for the information!
Tori
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Torigirl- Many BC women take iodine, there is even a thread here on BCO. There is lots of research indicating that iodine deficiency may contribute to the increase in BC. In Japan, where they ingest lots of iodine from seaweed, their BC is very low. Incidence of BC started to rise sharply when they started adding bromine to bread (I believe 60's). I think it prevents iodine absorption. Many years ago iodine was used in every household for many ailments orally. There are a number of doctors who advocate iodine as a supplement to clear breast tissue of cysts and possibly prevent BC recurrence.I haven't read this book yet, but hear it is great, by Dr. Brownstein "Iodine why you can't live without it" (something like that). I learned a lot from the www.breastcancerchoices.com site. They are non profit and even offer a free urine iodine loading test (I was very low). They sell the iodine supplement (Iodoral) that I take for less than anyone else. I like that the money goes to their research. There is also a huge iodine yahoo group that has been going for years. I told my doctors I am taking it and of course, they poo poo anything other than pharmaceuticals. At this point I have given them so many medical and scientific research articles that they accept that I am not doing this without thought. Several of them are quite intriqued by my research. Now that I have thrown the entire medical kitchen sink at this BC, I want to do other things to stay healthy.
Amyjo- You know me so well! I should have a Phd by now with the amount of research I have done!
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Hello ladies ... well here is an uncomfortable question to ask any of you on arimedix ... I now have more hot flashes and my husband just told me this morning I should take another shower before work...I just took a shower before bed... but he said it was not enough, I am motified what do I to do ...any answers to this problem, thanks , Cath
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Faithroad - sorry about the incision breaking, glad you are pleased with the outcome. I still have some seroma fluid build up. PS took 20cc out last week way down from the week before. I have been bound with ace bandage too. I have started to take it off during the day but still sleep with it on. See him again tomorrow, I know there is still some fluid but I hope it is down from last week. Had my bone scan done this week all good, and have a CAT scan with contras next week. Liver enzimes are up still. Looking forward to get all this healing done with.
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HIya Cat- hell, don't have to be on arimdex to answer that one....shower a lot and buy a good deodorant...I truly never needed one until I hit menopause...and then again after BC when my protocol also suppresses the estrogen...it just makes our bodies whacky- I am sure hubby was thinking of you- as bad or embarrassing as it might feel to hear it...I always think better someone would tell me than NOT say anything...big hugs and you will get through this....wear the lightest things you can get away with at home.. and loose...feels so good and when I heat up it hits FAST....
MJB...good news for the scan and here's hoping the next is just as good....big hug
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Let's just say I've become a fan of perfume this year!
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mj, hi, I'm sorry you are still dealing with fluid build-up. And doesn't that ace bandage get hot!!! But it does feel good as it supports the muscles and kind of sinches things in.
I was just ok'd to say good-bye to my ace bandage. But I'm more sore without it. I have the puffs/camisol, and my PS, said I can wear a bra, though he said not to invest in a fitted expensive prosthesis as my chest will change over the next couple months as it heals. I bought a couple very soft Warners bras and just put the puffs inside!! It's doable. and it looks great underneath clothes. The prosthetic shop sell bras for puffs, but I have to make an appointment and take time off work to go. Wish they were open evenings. I can't make it in there for a while as work is just soooo busy right now.
I'll need an in-office surgery in a couple months to fix a large pucker in the middle of my chest. It's like a third eye! LOL!!!
Cat, the hotflashes sound awful!!! Arg, I'm sorry you have them so extreme. (I get prickly burny feeling skin in flashes at night....it can make me a little nauseous. I eat popcycles to cool off sometimes.) I do take a low does of Clonazapam which is suppose to help with the hotflashes.
Panmar (hugs) hope you are feeling better.
Hello to you all here, and to the people I haven't met yet, howdy! ((big hugs to you all ))
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Saw PS and he didn't take any fliud out, thinks that the body will absorb the rest. Have to wear ace bandage for at least two and half more weeks. Hope he is right.
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Cat - After your shower use lightly scented powder mixed with 1 part powder and 1 part corn starch. I use the Crystal deoderant and then powder liberally all over after my shower and is does help keep me smelling and feeling fresher all day at work. The hot flashes combined with this heat really do anumber on our wacky bodies.
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Hello Ladies and THANK YOU for all your helpful advice... I am now trying everything and my husband is now smell check before I go to work and I am now glad he told me because thats what best friends do!!!! I just want to say how all of your kind thoughts have changed my life...Hope you all are doing well and having a great weekend...HUGGGGGGSSSSS!!!!!CATH
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Cat glad you DH is helping you out. When I first started rads and could not use anything but the crystal I found out if I used the alcohol hand santizer stuff that it really helped the underarm odor. Of couse I did not tell the RO or his staff as they would not have approved but it helped in the beginning. After rads I switched to Toms and I have found that the longer I have gone with out the traditional deod my body has adjusted and I no longer get the bad underarm odor unless I am outsided doing yard work or something. I would never have thought my body would have adjusted like that.
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Just diagnosed....all of these acronyms...so overwhelming. All I know right now is that I have IDC. Need a friend on here...and I've posted on many different forums, but no replies.
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Sheri this is a great group of ladies. I also have had IDC. Sorry know one has replied but you have a friend here in another Sherry and I'm your neighbor from Texas. Sorry we had to meet on her but it is a great place for information and support.
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Sherry--Thank you!!! I'm actually from Texas originally. Thank you for responding. I'm a little overwhelmed by this sudden change in my life plans. But, I don't have all of my results back yet from my biopsy and I've yet to have surgery. Tomorrow I have an appointment with the surgeon...then I think I'll have a better idea. Honestly, my first thought is--get it off of me--NOW!!! But, I know it's a process...and I'm a fighter...thanks again.
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Sherri you say you have had a biopsy. do you know the stage and grade yet. Have you had mammo, ultrasound or MRI? Once you meet with the breast surgeon you will have more information and feel better. Mine was stage 1 grade1 and my BS rushed me into surgery. I was feeling the same way you are feeling but honestly knowing what I know now I did not have to rush so much and I could have made better decision about my treatment. I did not find this website until right before I started rads. Where are you from in Texas? Keep us posted and we will be here for support. Also there is a thread for newbies that gives you the abbreviations. I'll go and bump the thread for you so you can have it to reference. If you go to active threads you will see it there. I'll try to come back here and post a link as well.
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Sheri hope this links works for you
http://community.breastcancer.org/forum/62/topic/735716?page=78#post_2539901
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Thanks, Sherryc. I have had a diagnostic mammogram--not your normal routine mammo, an ultrasound, and a biopsy. I have the patho report--but not all of it. I'm not going to rush into surgery as I want to make sure the surgeon's credentials are good. And, I know there are other surgeons in the area. I THINK I'm Stage IIa, or IIb...just guessing as I don't know if there are any cancer cells in my lymph nodes. My tumor is 3X1.1X1.5cm. I had an ultrasound guided biop, so I watched the whole procedure. From what I've read, I think surgery first, then chemo, then radiation??? This is where I'm currently confused...but as you said, I'm sure tomorrow, I wll get more answers. I'm from south Texas--Wharton/Bay City area. I've been in the New Orleans area now for over 20 years and consider it my home. I went back to Houston after Katrina for two years and lived in Pearland for awhile...but, Louisiana is my home now...Thanks so much for the link. I will go check it out now.
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You are correct about surgery, then chemo then rads. However depending on your stage. If you have a MX you do not need rads. But rads is required on a lumpectomy. But at further stages even a MX would require rads. I had a very good BS but came to find out later that she is very conservative. She never told me that if I had a MX I would not have to have rads. I found out 1/2 through rads. Wish I had known that up front. As now I will be having a BMX but I am healing really slowly from rads. So do ask lots of questions. I find that the more you read on here the more questions you will have. New Orleans has a great group of surgeons there so you have plenty to choose from. Even when you get to the point of have a medical oncologist I suggest get a second opinion even if you like the first one. it will make you feel better about what is going on. I also had an ultrsound guieded biopsy. I told my husband when I got out of there I knew it was cancer. I could see everything and I could read the expression on the radiologist face. Good Luck tomorrow.
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Sherri - sorry you have to be here, but glad you found us early. This is a great group of ladie and almost all of us were dignosed in 2010 so the beginning is still fresh in all our minds. Ask anything you want and feel free to express any feelings or problems you are having as most of us have seen just about anything that can happen. Our prayer are with you.
I am also from Texas (Houston) originally, but now call North Carolina home. I still have family that live in the Greater Houston area (Stafford, Missouri City, Pearland, Alief) I have not lived there in over 40 years.
Remember to ask a lot of questions, you might want to take a notebook with you to write down the questions you ask and the answers they give you so that you can process everything later and take someone with you to your appointments whenever possible. Another set of ear will help keep things clear. You may get so much information it will be like trying to drink from a fire hydrant! So take you time and be sure you understand what they tell you befroe making your decision and listen to your own intuition! You may not realize it yet but you know more about your body and what is right for you than anyone else. Take care and keep us posted on how you are doing.
edited to correct spelling. ;-)
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Sheri- Welcome to the club nobody wants to belong to. Sherry gave you great advice. We all remember being in your shoes. Those first few weeks were a whirlwind and I was immediately rushed into surgery. In hind sight, like Sherry, I wished I had slowed down and done more research. I was never even given the option of mastectomy vs. lumpectomy. Like Sherry's BS, mine was conservative and did a fabulous job. I will say, I am always worried that there might be more undetected BC in my breasts. I am also feeling that the rads were pretty harsh on my body. Oh well, I can't look back, only forward. I don't believe there is any harm in taking a bit extra time, getting second opinions etc.... My sweet AmyJo beat me to the suggestion of taking a notebook. I had one notebook and kept running notes. I also had a plastic folder with bungee tie and asked for copies of everything, every time (pathology, lab reports etc...). Like AmyJo said, so much info goes by quickly, only when I got home was I able to research things and I was glad to have those documents. Sheri, this beginning part is really the scariest. Once you get a game plan and get rolling fighting this beast, you will actually feel better. Let us know how things go.
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Hi Sheri, sometimes the weekends are a little slow here on the boards, so please forgive us and welcome (sorry you are here).
As for the chronology of treatment, sometimes with a 3 cm tumor like yours, they will try chemo first (neoadjuvant chemo) to shrink the tumor to a size that will allow a lumpectomy rather than a mastectomy. You might want to discuss this possibility with your oncologist. It is a good option because they can tell that the chemo is working if the tumor shrinks.
I know it is overwhelming at first, but try not to panic, take something to help you sleep if you are having trouble (I wish I had), and know we are here to support you.
Hugs,
Shelley
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Shelly so glad you popped in and corrected me. I had forgotten that sometimes they do chemo first to shrink the tumor before surgery.
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Hey SHeri- sorry you had to join us but glad you found us. Lots of texans here...I am in Richmond just outside of Houston...although I have found on this board how cool it is having so many women around the whole damn world be so kind and helpful. Everyone has given you great advice....ask as many questions to us and your docs...even if you sometimes do not know what you will do with all of the information! Sometimes we just jump in and give you advice even when you do not want it:) But it is all out of love and understanding.
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Sheri, Sorry you are going through this, too. It seems overwhelming, but this site is a life-saver for me. I have learned so much. I remember when I was first diagnosed... talking with others that have the same diagnosis is so helpful. Record your appointments, very helpful.0
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Hello sheri I will second the recomendations of our other wonderful women on here they are right on to tell you to make sure you have a BS you feel comfortable with then GO for it I was scared but happy to get the tumer OUT....that is your first step then they can tell exacttly what you have... but know as what happened to me you may need a second surgery if they do not get clean margins...not to scare you I was told 50% of women need the second surgery...then had chemo and rads...doing well and you will do well also....Hang inthere we are here...HUGS!!!CATH
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Hey Girlfriend, I wasn't trying to correct you, just wanted to add that option for neoadjuvant chemo. I was like you and was rushed to surgery (3 days) for an MX before I was even aware of the possibility to do chemo first. Also like you, I found this site well into my treatment. I don't know if it would have changed my treatment at all, to meet with the oncologist first. My tumor was so large, I really was glad to have it out. My boob was a mess. But I really wish I had known and had the choice. My surgeon is conservative too, which is probably why he just scheduled the MX without considering pre-op chemo. I have never been brave enough to ask him!
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When I first came to the boards the sistas told me 2 things that were priceless
1-a 2nd opinion is always a good thing
2- always bring a tape recorder to every drs appt.
That was the best advice the sistas gave me when I was soooooo scared.The end result was I went to 2-3-4 different Drs. until I heard what I wanted to hear.I recorded them all.
The best of luck in this ugly journey...We the sistas are with you all the way.God bless all of us fighting this giant monster.And yes we are gonna win this fight.Yes we will.huggggggggs K
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