Starting Chemo September 2015; join us!
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hiya southern - feel better soon!!!
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Not Exercise, but I'll weigh in on the hysterectomy vs ooph issue. In general, it's best to avoid removing the uterus unless it's medically necessary. Even post menopausal, the uterus serves as a 'support structure' along with the bladder, rectum, and large intestine. Removing the uterus allows the possibility that these other organs might shift and move into the open space left by the removed uterus, making pelvic prolapse issues more likely. Vaginal Vault Prolapse is one type of prolapse most common in women who have had a hysterectomy. Removing just the ovaries and tubes does not have the same risk factors, as neither act a support structure in the pelvis.
Good luck to all of you finishing up treatment in the next month or so. I finished my Chemo in February of this year and it already feels like a distant memory!
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southern, I am curious - how was the decision made to use a platinum chemo agent?
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Oh man that sounds good Southern! I want an In n Out burger, fries and coke! No hamburger joints close by though.
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You ladies are making me hungry! Actually, since the Big C from my FEC dose 9 days ago finally settled down, I've been STARVING. All my body wants to do now is eat --- even though my tastebuds are "off" :
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happy sunny fall sat ladies! To those who were in the chair this week rest easy and hopes for minimal SE's for you.
Scotland happy anniversary! Annie that scrub sounds really nice. Cajun sweet pic. Arista loved hearing about your adventures in robe and slippers. Made me smile. Southern you are my food porn enabler I want a burger now Lindy I hope you have no neuropathy- it sucks. Tessu yup even though taste buds are nuked I feel ya on the hunger pains. The only thing that tasted good yesterday was the chocolate chip scone from whole foods market. Mmm want one now.
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Thanks, y'all!
A burger sounds good, even with shot taste buds. I wonder where Rob wants to go for dinner... My older daughter is going to a boy's birthday party at a Greek restaurant, and has strongly suggested that we do NOT want Greek food.
Cajun, your kids are adorable, but I'm sure you know that.
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Hi. Just popping up.
Scotland- HappyAnniversary!
SouthernCharm-Always such a fine lady. Have a bacon cheeseburger for me.
I hear a lot of you are finishing your treatments. I feel so alone. Two times in the ER this week. The last time I had to sign myself out AMA (.6 wbc) plus port is infected. My insurance company called while I was in the ER to tell me to go see my PCP instead. I can't afford a hospitalization and who will take care of the dog? Plus my MO is not affiliated with the hospital I was going to be stored. Also .6 wbc is not low enough to be hospitalized at the major cancer center.
Lindy as well as everyone else on Taxol, I am learning from you. One more AC#4- I am free of the red devil but #3 has been a crazy ride. Just sick as a dog ( why a dog?) from beginning to end.
Love you all- Happy Thanksgiving!
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SC: A burger sounds really good right now! Maybe that is what is for dinner!
((((((Grey))))))! So sorry you are still feeling sick but hope it is getting better. Better days ahead SOON, I hope! and Happy Thanksgiving to you. Happy Thanksgiving to all of you!
xoxox
Octogirl
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I have been voraciously eating these last couple days. I lost 15lbs on chemo so clearly my body has been making up for lost time. I have promised myself I will make healthy eating choices after Thanksgiving. Right now I'm letting myself indulge. Taste buds are getting better, though many sweet things still don't taste right.
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Thanksgiving will be weird this year. I'm alone by choice because fam doesn't know about bc. Also will be the case as Xmas. They would be crushed so unless I'm IV with time ticking down, they won't know. My bro in down in LA, CA knows but he has to keep going like nothing is wrong and not come up and see me. That would put up a red flag something's wrong.
Grey, I have a long way to go. I just did AC #2 on Tues. 2 more AC then 4 rounds Taxotere so I'm in chemoville for awhile yet. Hope you feel better soon!
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Washing my scalp with Wen summer peach cleansing conditioner. This brand is excellent. You don't need shampoo with Wen cleansing condishes. Scalp while stubbly feels nice. I also love the almond mint. Refreshing!
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grey - so sorry, yuck! Are you on antibiotics? My onco will do IV antibiotics so you don't have to be in the ER. It sounds like you need neulasta or neupogen. My ANC dropped to .1 on red devil and put me on house arrest but it did rebound. You will feel better on Taxol!!! Also, I'm nowhere near done. I finish 2/5 at the earliest.
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okay, ladies. Now that I feel I know a good number of you, I would like to hear your cancer story. How were you diagnosed, what did you do, how did you end up here? As soon as I get on my laptop, I'll share mine
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5/26/15 Felt sharp pain in my left breast. I knew from months before that something may be up but had severe anxiety issues (not related) that I was the who cares mode. Waited a day to see if it would subside. Nope. Next day went to pcp and was sent for urgent mammo followed by urgent u/s. U/S was surprising to the tech who said along with the radiologist who got called in that they've never seen anything like it. It was so oddly shaped. They said it was either blood clots or a mass. So biopsy was scheduled the next day. Doc there said same thing too. In 35 years seeing these things, this was the most unusual. Said is a mass and most likely cancer. Had it at 2 cm.
Because of it's weird shape, they had me do MRI with contrast. MRI showed 4 cm. So I went into sx with the bs thinking it's 4 cm so he did a sentinel node dissection biopsy which is not what's supposed to be done on tumors greater than 5 cm. He didn't know I was really 7 cm. He was going by the MRI. He went in and pulled out 7 cm! It was dumbbell shaped with 4 cm being seen with a "tail" leading to the other part of it 3 cm. Not sure what the ramnifications are from the article I read on this site about having done the sentinel node biopsies (2 of them) with a 7 cm tumor as it didn't say. With micromets found in a sentinel node and the size of the tumor with it being grade 3, this put me at stage IIIA for now. Now we'll see if I am stage III when in the spring they do a CT scan to see about that lung nodule. If it's gone well then I very well could be IV. Hoping it's there!
My mistake was ignoring it all for 5 years. Anxiety is a horrible thing and you don't care if you live so let alone getting mammos. I think I'm past it as I"m doing well now but I'm sure I would have had this caught much sooner had I stayed up on the exams.
And that's my story.
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Hi Cajun great question. My mother had bc for the first time at 35 and two reoccurrences after that....she is cancer free and 66 years old now. I started having mammograms at 42 because of this the age the routinely send women in Australia is 50....lucky I went way before. I am 46 I have lobular cancer which does not form a lump and hard to detect in mammogram but they found mine. My mum had no chemo she was put on a new drug called Tamoxifen....her doctor was a bit of a trialblazer as far as treatment goes. She was pregnant when she was diagnosed that baby she was pregnant with just gave mum her 9th grandchild.
We have been dealt this very difficult hand to play but my mother gives me hope. We are getting chemo, radiation and hormane medication we have got a bloody good chance. Sorry if I digressed we are at the hard end of treatment and I want to spread message of hope and continue on with treatment because they do work and this will be behind us. My mum did.
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There has to be a little background to the story... I've been a government attorney for 6 years. In May, I was approached by a private firm that made me a tempting offer. It was a small firm and the hours would be long. I turned it down because I didn't want to take the time away from my family. But, because I had been considering it and I was afraid of changing my insurance in favor of something lesser, I had scheduled an OB appointment with the doctor who delivered my twins, scheduled for 7/2. I kept the appointment, even though I stayed at my job (and fortunately, got a raise to stay).
I mentioned I still had milky discharge 7 months after stopping breastfeeding. She ordered a prolactin test and inquired about my family history at which time I mentioned my PGM had died of ovarian cancer (I thought in her 40's, but it turns out it was late 50's). She mentioned perhaps considering genetic testing. She felt something very small on the left side, under my arm (turns out that was nothing) and recommended a mammogram, even though she was almost totally certain these were just postpartum changes.
The ultrasound showed nothing, but the mammogram showed calcification, categorized as BIRADS 4a (low suspicion of malignancy). I was offered a biopsy or a "wait and see for a year" option. The biopsy revealed high grade DCIS with comedonecrosis. I had done a lot of research by this point and I knew it was IDC. I had an MRI which showed nothing other than "loss of the fatty hilum - of uncertain significance" in some left lymph nodes. I knew from my research that meant about a 90% chance of cancer, even though none of the oncologists seemed concerned.
I met with the breast surgeon who seemed confident it was just DCIS and offered lumpectomy or mastectomy. I had a second opinion at Moffitt, they did an ultrasound, found nothing, and gave the same option. They would not even acknowledge my strong feelings that the cancer had spread. I was referred to the MO "just in case" who had a family emergency, so I saw somebody else, but I immediately liked him, since he did his fellowship at Emory (my alma mater). He did an exam and said he didn't think he'd be seeing me again. While I was meeting the MO, the genetic counselor called to say I was BRCA2+ and I bawled uncontrollably during our meeting.
I knew everyone was wrong. I knew it was IDC and I knew it was in my lymph nodes. At my follow up appointment with the breast surgeon in August, she had a cancellation due to a UTI for the next day, so I went in for surgery 18 hours later. I saw her post op and she told me about the positive nodes, I said "I told you so!" Back to the MO who offered me three chemo options. He said, "I would chose the hardest hit" 20 weeks of AC and T and then I would have an ooph and AI's.
So many things had to line up for this to happen... had I taken the other job, I would have lost my insurance and that job. Had I cancelled that appointment, I would not have caught this (no palpable lump). Had I not had a failed VBAC with my son, I would never have gone back to the doctor who caught this. Had the woman with the UTI not had to cancel her surgery, I would not be in this group!
So many blessings. :-) Love to you all!
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Arista - thanks for sharing your story. I have a strong history of anxiety as well (started Zoloft right after the birth of my son to try to ward off PPD and anxiety) and it can really be debilitating. I feel for you and I'm so glad that you are getting treatment now, even though I know it must be scary. Most likely, mets start with the bone, so I would be surprised if you are stage IV and will be praying not!
Cinque - that story hits home since your mom was diagnosed at my age. Thanks for sharing and hoping that you carry on the family tradition of long life in spite of this crappy hand we've been dealt!
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That's true Cajun. Things lined up. Same with me. If the pain wasn't too bad the next day I wasn't going in. I really didn't want to but it was very painful. Or I wouldn't be here either.
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Arista, I think you and I just made it. My 2 positive nodes were completely filled with nests of cancer, all high grade, with extranodal extension. I had multiple tumors with DCIS and IDC side by side. I have no doubt that I was not far from mets when they caught it. It is the nasty, nasty sort of cancer that moves fast and takes no prisoners. The pathologist in TN that did my second opinion found it so unusual that she called my breast surgeon to discuss the findings..
A friend of one of my best friends (a 2 time breast cancer survivor herself) was diagnosed with stage 4 with multiple mets (first diagnosis) at age 28 and she died last month, a year from diagnosis. It is just SO sad. I don't know why that wasn't me, but God must have a purpose for this time and more living for me to do before He calls me home! I hope I do it right!
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Yeah, there is no age with this thing. Why some go and others hang on for years I don't think anyone knows. That's why there is no cure, just hope to scathe it off long enough to have a nice life. My bff sis died a month ago today from pancreatic cancer that seemed to just pop up back in June. Just like that and she went down fast. So sad.
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I went for a routine mammogram at 47. Probably my fifth since I turned 40. I had no indication that anything was wrong. Even aft they called me back for additional images, I wasn't all that concerned since they always call me back. I have dense tissue and a few cysts, so there's always something they want more pictures of. But when I came back for the additional mammogram and ultrasound, the tech left the room during the ultrasound without saying anything, and said nothing upon her return. No "excuse" me, nothing. I knew she thought something was wrong. I was not completely surprised when the inept med student who tried to do my biopsy called and said it was cancer. 4x5cm ILC with at least one lymph node involved. Grade 2.
The first few weeks were a blur. More biopsies, ultrasounds and an MRI on the other side, and it seems that the right breast isn't trying to kill me. A month later, I had a left MX and ALND. Final pathology put the tumor at 5.5cm and Grade 1, which bumped me up to stage 3a. The surgery wasn't so bad physically. Emotionally, it was hard. A couple of weeks after surgery, cording hit hard. I did about six weeks of PT, and it seems to be fully resolved. Lymphedema hit about three weeks later. I just finished a month of lymphadema therapy, and it seems to be undercontrol.
I started chemo September 22, about five weeks after surgery. Before starting, my MO had me do a CT, then a bone scan. The bone scan showed that the spots the CT picked up on my spine were nothing. The tiny nodule on my lung we'll just have to keep an eye on. The MO feels that it's nothing (I have a history of bronchitis and pneumonia), and I'm choosing to believe her. We're treating this as aggressively as we can. Wondering if I'm stage IV will drive me crazy and serve no purpose. Stage IIIa is still considered an early stage cancer, and that's what I'm going with.
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I fully expect my cancer to come back at some point. But who knows what options there will be then? Even now, so many things are changing in the world of advanced cancer. There is a lot of hope for longevity.
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Scotland, I'm praying for you tonight too. no stage 4, thank you very much. We will take our cancer in the lymph nodes only. Or better yet, not at all!
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I'm with you Scotland on the lung nodule thing. Mine is 6 mm and I didn't get the don't think it's anything. Got the wait and see before get anxious.
How could I forget. THe CT scan found a spot on my pelvis and the lung nodule, 2 of the 4 places bc likes to met to! So I was stressed waiting for the bone scan result a week later. The spot on my pelvis was suspicious but the bone scan didn't find any metabolic activity going on so it seems it's just a spot. Not sure if she's going to repeat this after tx or if she's satisfied with that reading. I'm IIIa too until further notice.
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arista & Scotland, that reminded me that if I could sum up my breast cancer experience, it would be, "hurry up and wait."
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I know we'll do another CT for the lung nodule, but I don't know when. Because I have an unknown BRCA2 mutation, dense tissue, and my ILC went undetected in several mammograms before it was found, I'm planning to have a right MX when I do reconstruction. Right boob is not currently trying to kill me, but I suspect it may be planning something.
Cajun, as far as I'm concerned, one boob and three lymph nodes is all cancer can have. It's more than enough
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I think good call on the other mx Scotland. I wanted bmx from the moment I heard 2 cm. I hate my boobs anyway, they are D/DD and sag and I"m only 51. Get rid of them and get new and better ones I say! At least the one good thing out of this crap is a new set of boobs that will never sag again, and with the size I want!
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Arista, my little A/Bs have never sagged. They hardly jiggle. I was actually OK with them until they turned on me.
One of the more amusing episodes of my cancer is when a friend told her son and a couple of his friends (all early teens) of my diagnosis. The boys immediately started discussing my best reconstruction options. Apparently, I should be stretched across the hood of a camaro at a car show when I finish reconstruction. I don't think they thought that through...
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I will edit this later because I am on my crappy computer but I do appreciate hearing everyone's story. Its so crazy how we ended up here.
I went for my first and only Mammogram at 42. I had drove around with the order for a whole year because I didn't really know how to get a mammogram and I was ambivalent about BC with no history. Then this year I just made the decision that I would have my OB call in the order and do the mammogram before I got my pap.
Well I went in and then they called me back on Friday for a "follow up" I cried all weekend. The next week I called and they arranged for another mammogram and an ultrasound on different days. I told them to just get me in because I was a nervous wreck. Well the mammogram tech kept saying " I usually don't have to do this many images on both breasts" That stunk and I was near hysterical. Then the doctor came in and said " Would you stay if we can do an ultrasound today? " So I did. Then by the end of the appt they introduced me to a "telemedicine nurse" Who was going to be my new best friend evidently.
I went back and had a biopsy the next day on both breasts. Then they called me a few days later and told me it was "tiny cancer" in my left breast and I probably wouldn't need radiation even. Well there was a lot of suspicious spots in my right breast (possible DCIS) so I told the nurse to make sure they figured things out. So then I had a second biopsy. Over the next two weeks I went from a tiny little lump that was easy peasy to HER2+ Chemo... To DCIS in my other breast. I met with surgeons and tried to save my nipples but I couldn't so I interviewed surgeons until I found a PS who makes great nipples ( I call him the nipple guy) then to scheduling a BMX. They didn't find the IDC in the right side until surgery. They expedited the test for BRCA so I could decide on a BMX but I didn't find out until after my double Mastectomy that I was Palb2. I am grateful I did the BMX/
I spend everyday telling myself that early detection caught my cancer. I pray everyday it did. I hope with everything in me that Surgery got it and Chemo and everything else is "just in case" . Because my cancer is under 2cm I didn't think about or talk to anyone about doing neoadjuvent therapy and while I tried to make all the right decisions at the time and talk to everyone and interview with all the information I could, I find myself doubting my decisions. I go back over interviews hoping I chose the right MO, the right treatment. The BMX was necessary there was no way to save my right breast and with the Gene I have decided I did the best I could. I think that is just part of the treatment process. Its part of wrestling with this @$#@$%#$% diagnosis.
I just finished up TCH and now I am trying to come to terms with reconstruction, hysterectomy, AI. This upcoming surgery is freaking me out because I have time to think about it and decide on it and well just because It has been such a long road to here.
I so appreciate each of you and and what you bring to this thread. I appreciate the humor, the stories, the pictures and the shared experience.
Big Hugs
CJ
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