Starting Chemo September 2015; join us!
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Artista your questions about oophrectomy and AI are spot on. I think if I remember your age you actually fall between the specialty of both studies. They had found in the past that postmenopausal women strongly benefited from AI in previous studies. Then they decided to try it for premenopausal women most younger than 50. This was the SOFT/TEXT trial and my understanding was that in the age group around 48+ the tamoxifen was just fine and not statistically different. some MO said they would justs leave their patients on Tamoxifen until they went through menopause naturally. my mom went through menopause around 52 so I had 10 years more than likely before that was going to happen. Also the BSO(oophrectomy ) decision has more benefits if a women has a high risk of ovarian cancer but I don't think they totally know about the longterm effects of that. The only reasons I was told to take out the Uterus is below. They are not strong arguments either way. Some women just consider their family risk of uterine and endometrial cancer and if it is low they go ahead with just the OO
HERE oophrec vs hysterectomy-PDF and Keeping Uterus or not-PDF
Shelley? Was it you that had the mouth that was all white? It is thrush and I just had it after surgery it got so bad my uvula in the back of my throat was swollen. I took probiotics and my MO called in the Nystatin mouthwash from Chemo. I alternated gargling with that and saltwater.
Gosh this thread got long. Someone ask about TE swap to implants. This surgery was WAY WAY WAY easier than the BMX I had. The nerves and feeling in my chest stayed where they were and I did nipples at the same time. My PS put me on antibiotics until 3 days after the drains came out that was the only downside but I was so glad because I have read the biggest risk is Post operative infection such as Staff etc and rejecting the implants. The antibiotics made me tired and messed with my Gut but I think it was worth it.
Drains are supposed to stay in for a week. Mine stayed in for 3 because they would just not stop draining under 30ml a day. I was impatient and annoyed but it worked out. I recommend having your PS mark where he is putting the nipples and even look at a printout of the different implants he is offering as far as profiles shape etc. Better to get some say in the matter pre-surgery. That is what I did and while they looked just scabby and gross for a few weeks now they are healing and I am satisfied with the shape and the look.
I will have the nipple/Aerola tatooed a little darker and natural after I finish Herceptin but the color is a rose hue so maybe I will be happy with it haven't decided yet. I would not recommend picking up and carrying things for 3 weeks after surgery just to let the implant settle and the muscles readjust. Not much pain though upstairs .
Downstairs is a different matter. I am pretty tough and this pain is not much but annoying and affecting my activity level. About the OOPH/BSO sorry I say this so much but yes go orthoscopic if you can. My abdomen has "swelly belly" and I look like santa clause. Also it is pretty bruised down there and I think it is going to be quite awhile before I dare peddle my bike. Luckily we have snow and cold so I can recover. they want me to get out and start walking. I will as soon as I get the all clear from the PS about my drains this week. They didn't want me swinging my arms a lot as my fluid was still high.
I had a bit of depression and Gut problems post surgery and Chemo but the clouds are lifting and I am starting to feel a bit more up about things. I think I am 9 weeks PFC and 3 weeks post surgery.
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CarolinaAmy so sad about the adoption news. Thoughts and prayers with you.
El_Tigre if you have a link to the study I would love to know about it. I wonder if there is a participating hospital near my state.
BC messes everything up. I was just doing a routine exam hoping to then sign up for term lifeinsurance. Well now the insurance I will get is through my husbands job unless they cancel the policy then I am out of luck. Sad
I am having a hard time remembering who ask: Herceptin only gives me a runny nose for a week each time. I had some flu like symptoms the first time. I did what others suggested I ask them to run it with saline over the course of an hour. Hoping that would help. They didn't want to but I persisted.
I get what you gals are saying a bout blood work and scans. I actually think I should have gotten a second opinion at the beginning because my MO while super nice doesn't do anything . since I was node negative I have not even had an MRI, CT,PET nothing! Not even tumor markers which ticks me off since I am young and have PALB2. My insurance is stupid it only covers one hospital so if I go for a second opinion I would have to stay in the same MO group( unlikely they would contradict a colleague) or pay out the nose for a second opinion from another hospital. He says if I get symptoms he will scan it but most of the time these tests present false positives that just cause more and more problems.
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Exercise - I'll try to find the link for the trial.
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How long are the Herceptin infusions? They told me to expect to be there about 2 hours. Did you still get pre-meds?
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exercise guru: thank you for explaining re: tamoxifen. All this talk had me doubting my MO and second opinion MO's recommendation of tamoxifen (43yo and premenopausal). I think it is fairly standard to not have PET scans or CAT scans unless there is some cause for concern. I got an MRI of both breasts and did have tumor markers done (though they forgot while I was doing chemo...ahem) before chemo and after and will again in three weeks
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I'm torn with taking Tamoxifen during rads or not. There seems to be a controversy with it
who is taking it during rads and who is taking it after?
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Thanks Southern. I wonder why they told me to expect 2 hours. I still wonder why it's going to take 3 hours to give me magnesium tomorrow.
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I start tamoxifen 3 days after my rads have ended (this Weekend since rads ended today). My understanding is it is better to start after as they can better evaluate side effects et al but I imagine this is case by case as well. Found this article that summarizes a lot of more recent studies regarding hormone therapy.
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I asked about tamox during rads. MO said there has been no shown benefit and does not recommend it. He cited some studies that chemo brain has forgotten.
As far as PET scans, since cancer can mets without the lymph nodes, I'm surprised that most people don't have one. Though even that is not all that reliable, since the solid tumor has to be present, not just the cells. Maybe it's a cost benefit analysis since it subjects the patient to more radiation?
I think my MO has been doing tumor markers monthly, at least for bone mets, because he mentioned that the numbers were not elevated when the bone pain was the worst. He doesn't think they are terribly reliable, but sometimes helpful.
My ROs mx had triple neg 11 years ago at age 51. Bmx, chemo, rads. Disease free since! Love to hear those stories!
Got my tattoos... Set to start 2/3 for 33 zaps.
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aga, welcome back! Xo. I'm still sugar free, alcohol free, more organic and alkaline. That's about all the change I can muster, long term. It's been almost 6 months of sugar free and I still miss it every single day. Every day!!!! Will start exercising again soon.
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Thanks exercise for your detailed post. I'm 51 going 52 end of Sept. Mom stopped periods at 52.
Southern- My first MO did do tumor markers test and I have the results and gave it to my current MO so it's in my files. I'll bring it up. I'm guessing she won't say no to periodically testing for my piece of mind with the caviot that it may not be accurate. I'll be getting a CT scan end of chemo to monitor that lung nodule but nothing else unless symptoms.
El- Hormone therapy starts after rads for me. I haven't read anyone starting before rads.
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This is another way I feel my MO may be too minimalist. She hasn't run any tumor markers at all. Is that related to being triple negative? We don't have Oncotypes, but I don't know why they wouldn't run tumor markers. Otherwise, what's the point of the every-3-month followup appointments?
I'm having a weird thing today in which I feel feverish, but I'm not running one. The right side of my face was burning up and bright red much of the afternoon. And now my right arm and hand are doing it. How bizarre. Did anyone else have this on Taxol?
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camy, yes. I have been feeling feverish all day and when I checked the mirror, I had the Taxol sunburn, more prominently on the left side.
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Carolina- extra hugs to you. 😘
Artista - my MO believes the post menopausal estrogen blockers (in my case Femara) are better for me than tamoxifen. I'm not sure if that is based on stats or her belief that I will tolerate Femara better than tamoxifen. To be considered post menopausal you must be 1 year without a period or have the ooph. The onco gyn said that the ovaries and tubes should come out because they are the greatest source of estrogen for me. Because my cancer is estrogen receptive, I need to block it with both the ooph and Femara for best results. She said that my hot flashes and night sweats will not get worse after surgery. They will stay the same and then gradually go away. For some reason I expected they would be worse so that was good news to me. I can tolerate what I have now -- but was dreading them getting worse. Ha! I'm having a hot flash as I write this message.
Well I do believe my hair is finally starting to grow. It is very patchy though. Stubble, no soft fuzz. I also see I tiny bit of white fuzz on my cheeks. It's like springtime in my body. Things are starting to poke through and bloom. 😊🌷
I will check on the thrush thing-- thanks for that advice. If I have it, it's mild but so annoying.
Regarding markers- my MO also said they were not reliable and did not look at them during chemo at all. However, I meet with her next Tues and I will have complete bloodwork AND markers reported. I am nervous about that and have no idea what to expect. I do believe it is a data point to review and consider going forward along with other blood indicators like calcium. I have my first PET scan on Friday and also just had a bone density test. She did not order a heart test of any kind. I wonder why?
Cajun - I want to be sugar free but am week. You inspire me.
I just got a ninja bullet. Juicing is messy and tedious so I don't do it often. This bullet is quick and easy so I am hoping to get in the habit of making one each morning. Today I had a spinach, strawberries, blueberries, plain yogurt and almond milk smoothie. Tasted great! I need to research healthy recipes. Share if you have one!
Good wishes to everyone!
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THanks Shelly for the info. Did they do a FSH test for you? I'm thinking that's how they would know if your ovaries are still producing enough estrogen for an MO to advise this? Being so close to menopause I would think that's the only way they would know how the ovaries are doing right now with production being 51/52.
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CarolinaAmy, so very sorry to hear about your adoption problems. My heart goes out to you (((((hugs)))))
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My hospital only takes tumor markers or PET scans when you get mets or if the cancer has already spread at time of diagnosis. During chemo, before every dose, I got bloodwork for blood (white cells, granulocytes, hemaglobin, platelets). liver enzymes, and kidney function. They refused to order BRCA or tumor markers or calcium. No cholesterol measurement either; I wanted a baseline before starting AIs because those raise cholesterol, and high cholesterol runs in my family.
Sounds like bloodwork varies a lot between providers (as does treatment, imaging, and follow-up).
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Day 3 PFC and still in bed. Ready for the light at the end of the tunnel.
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Hi Artista- not sure about Fish test. I was probably in peri menopause but never missed a period and had never had a hot flash prior to my chemo pause. I had a high oncotype score of 33 so recurrence rate was/is high. Also multi focal tumors. Don't know if that plays into her recommendation for oomph but was definitely the reason I had AC T chemo.
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shelly, I'm curious...what is a multifocal tumor? What was your ki67? Being sugar free is the pits! I've stuck with it because I know if I ever started up with sugar again, I could never go back. I thought it would be easier by now... Nope.
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Thank you all on the Tamox Question!
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Cajun, a multi-focal tumor is basically two or more connected tumors. Feel better! Just knowing that after the final chemo, I could say goodbye to the SEs as they left instead of "see you next week" was huge for me.
I don't think I've had tumor markers done yet, but the MO will start at my next visit (a week after rads end). At that visit, she'll start me on Tamoxifen and order a bone density test (because tamoxifen and AIs can wreck bone density). She said that there wasn't a proven benefit to starting tamoxifen during rads, and that healing from chemo and doing rads was probably enough for my body to deal with. I got a CT before I started chemo because I had a large tumor (more or less my entire breast) and positive nodes. I had another one last week because the first one found a lung nodule that needs to be monitored.
In a couple of hours, I'm getting an echo. I had one before starting chemo as a baseline. Because I had a left MX, my radiation is to the chest wall close to my heart. I think she wants another baseline
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scotland, how are you feeling about left chest wall rads?. I'm having that too and a little nervous about the possible implications for my heart. But my RO said we really need to due to my age and positive nodes. In the end, the fear of cancer trumps heart, but kind of sucky choices.
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Scotland & Cajun are you doing the breath hold machine for radiation?
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no, I'm not. I asked about it and was told that it is 3-5 mins of continuous rads, from specially targeted planes and angles, so no breath holding. Eek.
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I will be getting 20 sec treatments while holding my breath to expand my lungs and push back my heart. I still will have an elevated risk of lung cancer but that would be yrs down the road. I have mixed feelings about rads. On one hand it gets the superclavicular nodes and any stray that chemo didn't get in the chest wall and on the other hand it introduces more radical into your body.
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Cajun, I'm also a bit nervous about the chest wall rads, but I know that the risk of heart damage is slight (something like 1%). The chance of recurrence is greater, and more likely to kill me than the resulting heart damage. If I get a local recurrence, it will be in the chest wall, skin or clavicle nodes because I have no breast tissue. That would be at least Stage 3b, which is no longer early stage breast cancer. So off I go on Monday to start rads, confident I have chosen the best of my bad options yet again.
El Tigre, I'm not using the machine. When I did the simulation, they tested my breath holding. Apparently, I'm a champion breath holder. I can do it long enough (maybe 20 seconds) and I'm really consistent.
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Scotland - NICE! yeah the risk is slight but my history of heart disease they were concerned.
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I don't know if this is helpful or adds to the conversation but I am 42 bilateral BC so both sides and all through treatment my MO was sure I was going to go on Tamoxifen. It was only after the PALB2 Gene when the GYNO MO wanted to remove my ovaries that we started to talk about AI inhibitors. When you look inside the SOFT/TEXT studies there were very specific groups of women who benefited by age & Tumor size etc. Many of the women did not see a statistical benefit to ovarian suppression and adding AI.
I will see if I can link to the thread where they posted the study and the results. I think the supplement breaks out the results by staging and age ( page 15 I think)
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My family history of heart disease isn't strong (one grandparent. My father's official cause of death was congestive heart failure, but it was caused by advanced Alzheimer's). My baseline echo before chemo showed my heart to be quite healthy. My family history of cancer is nuts. When I went for genetic counseling, I told the counselor she'd better get more paper to take my family history. While I'm not technically BRCA positive, I have an unstudied BRCA variant couple with a strong family history of cancer. It made rads a pretty easy choice for me.
I am so ready for treatment to be over. After my MX, I had physical therapy twice a week for five weeks, spanning chemo #1. A week or so after I finished PT, lymphedema reared its ugly head and I had LT five days a week for six weeks. It was a total pain, especially during chemo. In December, I just had chemo every two weeks. It was like a vacation. Now I get rads five days a week for six weeks. Whine over.
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