2010 Sisters
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Hi Ladies:
Just want to say hi and welcome to the newbies. So sorry you have reason to come here but hope you find comfort from our sistas as I have. I still have not heard anything from my pelvic US nor any results from SNB. I am still sore from surgery but the pain has eased up so I finally went a night without any pain meds. I find when I'm upright and walking/moving around after laying down it really hurts. Possible drainage? I also feel a sensation of fluid running down my armpit but when I check I'm dry, I take it this must be drainage also inside? I did not have the pain under my rib cage for a few days and was hoping it was gone but now that I have stopped the pain meds I feel it again. Still some nausea also. It's really starting to wear on me. The waiting and the wondering.
Granny -I'm glad things are looking a bit brighter for you. How sweet YOU are! Your always there with friendship and hugs and love. God Bless you and all our sistas.
Cathy
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Well I have finally started chemo. I did take some time to have some fun before hand. Went on a two day camping trip with a good friend, and by the way a good friend drops all plans to go sit in the woods with you. And then a day and night at the beach with my sister. Nice walks on the beach, fried clams, all my favs. So I have a happy place to go to in my mind of very recent nature! I slept through the treatment, benadryl is marvelous for that! My port worked perfectly so def was worth the trouble...my dh is not handling this well at this point, so early in too, I hope to pursuade him to seek some advice...my dd has heard from him everyday about the same subject, poor dd. I wanted to sail into this smoothly and hoped that would set the tone, but dh has fears I can't address. I have my own but won't give them much of my energy. DD is following my lead bless her heart, being positive is the only way I know to face problems, so she is much like me in this. Have a bit of a stomach issue today, slight headache but mostly I feel good. Cleaning the house, this morning and now a rest. Best to all head shaving, I have what three weeks? Then I'll join that club too!!
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to Joycek. Hi, we have pretty much the same stats. I find myself worrying about a lot of things but you just have to keep plugging on and living your life. I was dxed in oct 2009 , lumpectomy in november and dealing with BC in my mind since the very first day. I make a effort to try not to let BC take me over, Some days the only time I think about it is when I have to pop that lovely tamoxifen pill. I try not to think about it to much. I refuse to let BC rule my life. Hope all goes well with you. ((HUGS)) Jamie
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Vickie - I don't know when your lumpectomy was, but 3 weeks is not too long to wait. They want you to wait some time after surgery to start chemo anyway, so try to be as patient as you can be. (I know - way easier said than done.) I think the thing about chemo is that there are so many possibilities of permanent side effects, that if you aren't going to get much benefit from it, the risks do not outweight the benefit. That is why the onc is not going to recommend chemo if the oncotype score comes back low.
My mom had a 1cm tumor that was mostly DCIS and a tiny bit of IDC, 13 years ago. She had lumpectomy and radiation, and that is it. She refused the Tamoxifen. I'm happy to report that she is doing great - never a recurrance, never even a scare since then.
BC is a very scary thing, but it sounds like your doctors have your best interests at heart.
Good luck to you!!!
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vicky-I was in a very similiar decision-making mode a few months ago. Though I had a micromet in one node, my Oncotype was in the low range and they said chemo would not give me much benefit. It was my call to make. Like you, I could not get comfortable thinking some cancer cells might "get away", whether or not that was logical. I chose to do chemo, but I elected to do a less toxic, older standard called CMF to cover my bases so to speak. I did a lot of research and it is still used at Sloan Kettering and Dana Farber and has a long, successful track record. It is very doable. I just finished my 4th chemo, only two to go. I still have all my hair, 70 % keep it on CMF. I have a few tired, crummy days after chemo,then bounce back really well and am pretty "normal" for a couple weeks. I also found the cancer math site helpful to evaluate the many different scenarios (with chemo or not, with Tamoxifen or not etc...) Just google "cancer math" and you can find it. For now, try to not worry (I know, not easy). When you get your Oncotype score back, you will have all the factors and will be able to make your treatment plan. No matter what anyone else says, go with your gut. Your instinct is keen and will tell you the right way to go, whether it is to do or not do chemo. Once you make your decision, don't look back. There is a CMF thread that has been going for years, ladies past and present. I wish you peace and clarity in your decisions.0
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Hi everyone, Had another biopsy today of the axillary nodes, OH MY GOD!!!! Just cut my arm off, and this was with lidocaine. But my husband stayed by my side until we made him sit down with his head between his legs.
Going for the port for chemo, my 12 yr old niece is 5 yrs out from chemo with leukemia. She said" don't worry I will help with your chemo, it is easy". Out of the mouth of babes! She is now my hero.
Peace and laughter to all.
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rachel1578- You had answered a post I had put up re: pain under the ribs. You had said you also were experiencing this. Still having it? Have you shared with your onco? Just wondering because I had it VERY bad the 3 days before my last surgery SNB including the morning of (prior to the surgery) but when I woke up it was gone. I was so pleased and didn't worry about it anymore. Funny how it left I thought but then when I stopped the pain meds I found it may not have left after all. Not sure if its returning or was always there just masked by the meds. I told my onco and she is ordering a bone scan and told me to get to emergency if it returns as bad as before. Scary big time. Wondering how you were making out.
Cathy
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inthepink49: The Oncotype test analyzes 21 genes associated with growth. Chemo kills fast dividing cells, so if your cancer cells are fast growers, it will kill them. If your cancer is slow growing, it will have no effect on the cancer, but still kill the rest of the fast growing cells in your body, your hair, nails, etc. You will poison yourself for nothing, you want to poison yourself for something. They used to give chemo to more people because they were ignorant of who would benefit and who wouldn't. You get that Oncotype test, the waiting drove me crazy, seriously. I went on Zanax and had an anxiety attack, but my news was good, I scored an 8 - my new lucky number. Don't let fear rule your decision making process. I can see you are arming yourself with knowledge right now, keep that up, the more you know, scary as it all is, the better the choice you will make. The silver lining was that I was bugged by the thought of radiation, but after pondering the possibility of chemo for 2+ weeks, radiation is a piece of cake. I practically skip into each zapping now. We are going to beat this thing with a stick! I promise.
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Hi Cathy---I am still having it--it is weird--and it is freaking me out. I am terrified that it is something to do with the bones. I have my bone scan coming up and did mention to the Oncologist before my last chemo and he didn't seem too concerned. I am meeting him again on Monday for my white blood cell count and will ask again. My husband thinks that I am completely stressed and my back is very tight and perhaps that has to do with something. I, on the other hand, am terrified. I did meet up with my family doctor last week and told her and she said that it would be highly unlikely that it was bone cancer based on my grade etc of cancer. However, I seem to be having the worst luck in 2010 so all I can do is hope and pray that it is just something strange and not bone issues. I'll keep you posted but my bone scan is not till Aug 30th as the last one was cancelled as it was too close to chemo and I had pretty bad side effects to the first chemo. I wish that I had done it now....oh well.
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Jessica73-->I'm so sorry your stepmom is going through this! It must be so difficult on your family. I live in the north metro area of the twin cities. I've heard of the Piper Center, and my impression is that its a good place to be. I go to the Cancer Care Center at Regions Hospital, and I love it there, so if you need another opinion, I would recommend Regions.
I'm glad you found this site, and its nice that you are helping out by searching for info! Keep us posted on how your stepmom is doing!
Tina
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jag82569: I just read your posting and I'm sending you lots of love and hugs and prayers for peace, for grace, for serenity. I wish I had something more concrete to offer. I don't. Feel that? That's me squeezing your hand. I have not recognized myself a few times this summer, I felt so crazy and lost. But, I'm back now. You will find yourself again too, I promise.
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Cheryl, I cannot even IMAGINE being awake for a SNB! I mean that incision still aches from time to time for me and it has been since 5/20 - 3 months! You are blessed to have a chemo guide in your niece. She'll keep you going! One foot in front of the other.
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cherylIQ- I'm with Barbara, what's up with having a lymph node biopsy under local lidocaine? They did mine as outpatient surgery, but I was definitely asleep. Thankfully! I'm so sorry you were so uncomfortable. Good of your DH to stay with you. I can imagine that he might have felt faint! This is not a pleasant procedure. Let us know when you get your results. One more thing to check of your "too do " list!
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I am thinking and praying for each of you and of course, myself, as I sit here with a ice pack that leaks and runs down my arm. Well, we will see on Monday the outcomes of the nodal biopsies and go from there.
May peace and laughter be with you.
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Hi everybody,
Jag - I'm sorry you're going through this. As others have said, the early period when you are waiting to come up with a treatment plan is the worst. Once you have a plan in place, it becomes MUCH more bearable. You might want to check for postings on Penguin Cold Caps. Supposedly, they can help you keep your hair during chemo. I have no direct experience with them, so can't say whether they do or don't, but some posters swear by them.
Jessica - I'm sorry about your stepmother. The pathology report should contain her hormone status. Sometimes oncologists don't THINK about how what they are saying is sounding. It sounds like your family needs more information, so you can know what you're dealing with and likely prognosis. I hope the prognosis is better than you think.
Onward - Best wishes to you as you go through treatment. Please post and let us know if you need anything.
Inthepink - I was in a similar position as you regarding chemo. I was scared to have it, but equally scared NOT to have it. The oncotype score does not just tell you risk of recurrence, it actually predicts benefit of chemo. My score came back saying there was really no benefit of chemo (nothing to offset the risk of doing it). I really had some peace when I saw the score and the graphs that came with it. Chemo does not actually help everyone.
Rachel - My heart goes out to you. I'm sorry you have to wait until 8/30 to have the bonescan. I wish we could just get tests done immediately (and interpreted immediately!) so we did not have to wait and worry so much. Sending you positive thoughts and prayers.
Karen
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cherylQ- Icing is really important, keep it up, but not constantly. As I recall something like 20 minutes on and 20 minutes off. Leaking ice packs are no fun. Do you have any bags of frozen peas? They work great and mold better. Just make sure you wrap them in a clean cloth.
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Hi again. Thanks to everyone, and especially DesignerMom, TMarina, and karenlen, for the kind words. Thursday night was really rough, but I guess I should have talked to my stepaunt, who's been doing all the visits with my stepmom (and went through her own breast cancer, lumpectomy, and chemo several years ago). She wasn't as afraid Thursday evening, but she did directly ask the doctors on Friday if my stepmom's cancer was terminal (which is what it had sounded like to my stepmom on Thursday). The doctors assured her it was survivable - it was just very aggressive so they wanted to get in front of it as quickly as they could. Hence the chemo starting Monday (instead of the original plan to do the double mastecomy first and then the chemo). So, after Thursday, that's what I now consider "good news." And you're right, I do need more details, which I hope to get this weekend. I know she has IDC, and we should have the report on the hormone receptiveness, and the results of the DNA test by now, so I just need to find out what's in there. Thanks again to everyone. And I'm thinking of all of you, going through this or watching your loved ones go through this. I hope you all manage to have some joy in your life this weekend.
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I have been reading all these posts for the last few hours and am amazed at all of you.
I was diagnosed on 7/19 with ILC Stage 1, but was that ever wrong! After 2 mammograms and sonogram showed nothing, in spite of the fact that there was a mass everyone could see and feel. I have had a MRI, Bone Scan, CT Scan, FNA on suspect node in both right and left sides, and the diagnosis changed yesterday (8/20) to Stage IV with the cancer having spread to my liver and bones. Needless to say I am overwhelmed and still crying. I am scheduled for CT Brain Scan, PET Scan, and a Liver Biopsy the next Tue - Thur and surgery to remove both breast on 9/2. They started me on Femara yesterday. After the surgery I will have radiation, then chemo.
I don't know what to think, say or feel anymore. I can't remember what all they have told me. My husband will fill me in on what I don't remember when ever I stop crying for more than a few minutes.
Fortunately I have a wonderful husband to just hold me, daughters flying in from across the country to be here, and lots of faithful friends locally that are here to love and help. I am glad I found this place to share what I am going through with others that are going through the same type of things.
I guess we are all off on a life journey of support for each other. Since I am so new to all of this I don't know what advice I could give anyone other than get a prayer network going for you. Prayer does change things.
Joy and blessings to all you my new sisters.
Amy Jo
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Amy Jo---Sending you positive thoughts. I was sad to read your post--but--this can and will be beat. Take care, Rachel
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Amy Jo,
I am SOOOO sorry! To go from a Stage 1 diagnosis to Stage IV in a month is awful. There is nothing I can say to make that less awful, but we are here for you 24/7. It sounds like you have a treatment plan starting to form. It really IS easier once treatment starts - at least the fear eases up and you feel like you're DOING something. I'm glad you have family and faith to help you through it.
I will keep you in my thoughts and in my prayers,
Karen
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AmyJo- Oh my! What you must be going through! I'm surprised you are even able to post on here. As the understandable shock wears off, you will begin to do what you have to. You are going to be amazed at how knowledgeable and strong you are. Like all of us, you are going to learn SO much and take charge of your treatment. Stage IV is a very special BC and I certainly don't understand the very special concerns that those ladies feel. However, there are many Stage IV threads on this forum and I would encourage you and your daughters to talk to those ladies. They are going to help you so much. Just talking with ladies who have gone through all this already helps me be less fearful. Please come back and let us know if we can help. I will keep you in my prayers.0
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Amy Jo - I just wanted to add my hugs and positive thoughts. That is so frightening, to think you know something and to find out it is something else! I'm glad you have family around to support you now.
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Thank you ladies for the encouragement and prayers. I will keep you all posted on my journey and hopefully it will help someone else along the way. Hugs to all of you.
Amy Jo
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Amy Jo: There are no words I can say that will help, just know that we all care and prayers are going up for you.
Rachel: Did I ask why you are doing rads? Your diagnosis is similar to mine, we are doing the same chemo and they said I didn't need rads after looking at several factors from my path report. Just curious. You can PM me if you don't want to put it on the forum.
I guess sometimes ignorance is bliss. I had 3 biopsies under local anesthesiak one ultrasound guided biopsy of left breast and lymph node, and then MRI guided biopsy on left again and 3 places on the right breast. . I didn't know it was any big deal
They weren't too bad.0 -
rachel5738- I'm sorry to hear your still having the rib pain also. I know what it can do, and I hope your bone scan comes back clear. I am hoping its something else simple causing the pain for us both. Sorry you have to wait so long for the test. I don't have a date for mine yet. It was late Friday when my onco ordered mine so I have not yet got the date. Hope it is soon as it is cruel to keep us waiting one more day that we must for tests and results. I think its only normal that we get stressed. Thinking of you, good luck.
Amy Jo - Words can not express how we sisters feel for you. We have all feared what you are now facing. I just hope you can find the strength to deal with what you must and get through it. I'm sure you will find some stage IV survivors who can give you the hope and inspire you to not give up - many have still beaten it for years and years. Just know your not alone and we care. My onco won't even stage me yet till all the facts are in. Now I know why.
Cathy
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Hi Ladyinbama---I had lumpectomy--not mastectomy---therefore, protocol is rads aswell to ensure breast is clear. From your info, looks like you had mastectomy? I guess different decisions? I do know that in speaking with the radiation oncologist--Mastectomies are not as widely performed in Canada as in the US--not sure if that is just different protocol or not. My tumour was 1.7cm (almost exact as yours). Strange...i will ask on Monday when I see my oncologist. I am OK with not having mastectomy as long as this THING doesn't come back.
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Hello Ladies-
I have my ok moments and my horrible moments. I have to thank all of you for your tips and most of all your love.
I had a full day at the hospital yesterday. Bone scan, Ct, and echo. I'm still waiting on my HER2 results from my Lumpectomy paths. I actually received a phone call from my Oncologist on Thursday and she said that both the HER2 results came back negative - but because the path results from the biopsy came back positive she wants to confirm with the head of pathology the negative reading. She told me not to get too excited and to be honest with you, I feel like I'm under such a cloud that I can't get too excited about anything these days.
I'm meeting with a local oncologist on Sept 3rd at the Augusta Cancer Center. I'm not sure how soon i start chemo after meeting him. I'm lucky enough to have an appointment with the head of Oncology and he comes highly recommended. I do think if you have the utmost faith in your doctors you can concentrate on the other million details.
I'm still having a hard time sleeping. I am up every morning at about 4 in a panic.
I want you all to know that I pray nightly with my nine year old and you are all in our prayers. I hope one day I can help someone like you all have helped me. I can't wait to smile again.
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dear sistas
i go away for 2 days and come back to find all these newbees.shit.that stinks.someone had a SN biopsy without going to sleep.that dr.should do that to his mother.Some of these drs.just make me sick.I am sooooo sorry to hear all this shit over and over again.DEAR GOD when is this gonna end.I PRAY FOR EACH AND EVERY ONE OF MY SISTAS.
God Bless all of you.Im sending a big huggggggggggggggg to each and every one of you...AND we need a group huggggggggggg now..
I love all of you
K
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Onward, InthePink, AmyJo -
Welcome, sorry you are here, but we are with you. There are more of us every day. At least we can come here for information and friendship. Blessings to you.
Shelley
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Big Hug back to you Grannydukes!
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