MIDDLE-AGED WOMEN 40-60ish
Comments
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Janis gently hugs to you. I so remember how miserable I was at the beginning. I hope your boost do not include your nipple area so you can get some reliev.
I went to my endo yesterday and all my adrenals are good but testosterone is still very low but he does not want to treat because of high risk family cardiac disease. But I did find out I am in peri menopause and almost to the end. Funny though in Jan was tested and no where near peri menopause. Started Tamox in Feb and now Sept I am almost done with menopause. I know they say tamox does not cause you to go into menopause but I wonder what my body is really reacting to?? Will go see my MO in a couple of weeks so will share all this new info with him.
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Barb58 I know how you feel. I was freaked out more on the Tamoxifen then I did for the chemo. I stared at that bottle for days. I had so many visions running thru my head that I was beside myself. I finally did it and it is mind over matter from there. I did split the pill in the begining, but after awhile I took the whole pill. I have been on it for 3 months now and the only major SE I have had is hot flashes. They have decreased but I still get them pretty bad somedays. Good Luck and jump on over to the tamoxifen thread, the gals are great over there.
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Just back from getting Herceptin. The NP says I definitely have lymphedema.
I thought since the swelling has gone down so much to the point where it's hardly noticable now that it was just from the small cut I had. She said it wouldn't still be swollen at all if it weren't lymphedema. Is this correct? Not that I'm checking up on her, but...... I guess I am. Next Thursday going to a lymphedema therapist to get "wrapped". Oh, the fun just never ends with BC.Also, talked about vitamin D and Tamoxifin. Last time I was there (three weeks ago for Herceptin), the regular NP told me she'd give me the script to start Vitamin D next time I came, that I could take it during rads. She did say that I could also wait until I was done rads to take it if I wanted. She was out today because her son was sick, so I saw a different NP. She checked with onc, and onc says don't take Vitamin D until after rads, but next time I come (3 weeks from now), see her and she'll explain anti hormonals and start on Tamoxifin. I'll be two weeks into rads at that point. The NP said they didn't like to start Tamoxifin during rads because of side effects. Geez, they're dealing with the same patients, I think they better get on the same page.
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No boost today, machine broke. So I get a day off. They rescheduled me for later tomorrow...noon. After rads I have to see my RO. Then I have to be at the hospital a good 20 minutes away for my thyroid node biopsy. I'll be rushing tomorrow afternoon.
Thanks everyone for the well wishes! I am sore but braless at least. Not leaving the house again until tomorrow!
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Wow, you have a busy day tomorrow. Will be thinking of you.
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janis will be thinking about you tomorrow. Hope you don't get too rushed.
Kay I do think they need to get on the same page. My MO wanted me to start tamox during rads but my RO did not want me to start until 2 weeks after rads. His reasoning was if I had a reaction in the form of a rash they would not know which had caused it. So MO said OK to that.
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Thanks for that Sherry. I'll check with the RO on Monday when I have the simulation. Good idea.
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kay1963, In the five-year scheme of things, waiting another month or so (til rads are finished) to start Tamox. seems like no big deal. It is better to isolate any side effects that might show up, to know where they are coming from. I started on Tamox. a whole month after rads were done.
However, are they wanting to start you a.s.a.p. because of your B/C being Grade 3, and because of the spread to the nodes? Maybe sooner is better if your B/C has a more aggressive nature. That is the question I would ask.
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I don't think it has to do with the grade. I am guessing it may be because the onc is pregnant. She's due Dec. 1. Maybe she wants to make sure she gets it taken care of since I only have a few more appointments before she'll be on maternity leave. I'll see what she and the RO says, but I agree, waiting a few extra weeks doesn't seem like a big deal.
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Kleenex - My MRI showed I had 2 cancerous spots on my left breast and something my BS wasn't sure about. According to my path report one was lobular and one was "invasive mammary carcinoma with mixed ductal and lobular features, Nottigham grade ll of lll" (which is all Greek to me)There was also something "suspicious" on the right one so that's why I chose the DMX. Turned out the suspicious growth on the right breast was not cancer but not sure after 2 lumpectomies on the left how much breast I would have left which is why I decided to go the route I did. I honestly thought that was all there was to it. My BS seemed pretty positive that nothing would be in the lymph nodes so I was really taken off guard when Dr. Doom told me what he did. Having a mastectomy didn't phase me much as I knew I was having reconstruction. If that wasn't an option I probably would have done the lumpectomies and maybe rads. I knew I would never do chemo.
Elimar - I did call Dr. Doom's office today to find out what exactly he planned to do radiation on. When I was called back by the PA she didn't see anything in my file that indicated I needed radiation or what his plan was. Told her I didn't like Dr. Doom and didn't feel like we were a good fit and that he was just throwing chemo, rads, hormone therapy at me for no good reason. When she called back she said that he agreed "perhaps I should use another one of the physicians in their group". I didn't know whether to laugh or get angry. When he told me if my cancer came back because I didn't do chemo IT WOULD BE FATAL I told my wonderful BS what he said and she was shocked that he told me that and was going to talk to him about it. I'm sure that didn't help create a great doctor-patient relationship.
Diagnosis: 4/29/2011, ILC, 1cm, Stage IIa, Grade 2, 1/7 nodes, ER+, HER2-
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Oops forget to ask a question. If I'm not doing chemo, rads or hormone therapy what is the purpose of seeing the oncology practice in 3 months? Is there a blood test that would tell them where I am at as far as a recurrence or do I just assume everything is okay until or if I have some new symptoms?
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chiluvr, I've switched docs in a group practice before (not oncology practice.) It worked out good. Really can't hurt to try finding one who will better about communicating. The doc's comment was nonsense, if he used the word would rather than could. Any one of us might get recurrence. It could be local, requiring more surgery and treatment; or it could be metastatic (also called distant recurrance) which is not curable so, to that extent, fatal. We take the treatments we take to avoid either scenario, if possible.
I have to say that you are overlooking one other thing, and it is big. You say you don't want any of the treatments. You seem to think the node stopped the spread of cancer and got removed. But, you know, the lymph system is only one route of cancer spread. The other is the bloodstream. No one can guarantee you don't have single cells, or small groups, circulating in your blood, heading for the bones or organs. Taking something (chemo or hormonal, sometimes both) is what addresses that possibility. That is why I would be in favor of the Femara, to at least try it. What if you can tolerate it well? It may be no big deal. But it is your life, and of course you must decide the quality you want from it. No one made my decisions but me, and I am only a stranger with an opinion.
p.s. Your other question: Most of us get CBC (blood counts, etc.) and Chem Panel (liver function) blood draws on a regular basis. Those simple tests are not diagnostics for B/C status. They can give the doc an idea if something is out of the ordinary, and be a guide to what further testing may be needed.
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Janis- Good luck tomorrow hoping for B9 results.
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Thank you Elimar for caring. Maybe I should be taking the Femara but with my history of fibromyalgia, osteopenia in my spine and chronic depression I am just too afraid. If my quality of life gets much worse I may as well never get out of bed. I have a lot of SE's from many different medications: certain pain meds, steroids, antiobiotics, etc. so I'm extremely nervous about taking something that causes so many SE's for so many people.
Diagnosis: 4/29/2011, ILC, 1cm, Stage IIa, Grade 2, 1/7 nodes, ER+, HER2-
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Janis, will be thinking of you tomorrow and wishing you the best! I am so happy that fall is here and for me that means fewer hot flashes yeah!
I certainly remember not wanting to take my first Arimidex, I worked my self up over nothing that I can't handle and I am hoping it keeps me dancing with good old NED. Some day's though I have to make myself take it and my other meds too. I am just not a pill taker and it is annoying.
I started a new part time job today for a company that takes calls from people before they break ground to ensure that the utility and cable companies mark their cables and pipes etc. I had no idea I would have to be able to map OMG I can't read a map at all!! I am so spatially challenged so keep your fingers crossed that somehow it comes to me in my sleep
I only have to do it till Dec. when I finish my nurse refresher course, but I really need this job now.Love and hugs to all,
Linda
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Janis--I'll be thinking of you tomorrow during your biopsy. Got my fingers crossed. Missing a day of rads is not so bad--let you heal a little bit. It'll be over before you know it!!
Kay--my RO told me not to megadose on any vitamin--nothing above the 100% RDA on any vitamin during rads--just a plain boring multi-vitamin. Not one with 125%, no way. Just 100. do you know how many vitamin bottles I had to look at to find one that didn't go over 100% ?? And then as soon as I was done with rads, my MO put me on E, B complex and D mega alot. Don't know the rationale. Does anyone?
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Janis - good luck tomorrow with the biopsy. I hope your boosts go smoothly and don't cause any more damage and healing begins quickly.0
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good luck tomorrow, janis! i'll be thinking about you.0
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Best wishes Janis for a B9 result. Good to rest today and miss rads, more time to heal.
chiluvr I totally agree with Eli on your option to take meds. I am also allergic to many meds and was surprised that when I started my Arimidex that I had none of the SE that many complained about. As the ladies on the tread told me that you may read alot about the SE's but that doesn't mean you WILL get them. Many others are out there taking these kinds of meds with very litte or no SE's but you just don't hear about them cause they have no compaints. Please don't be afraid to try something that can help you beat cancer. I have depression and fibro and take 5 meds on top of the Arimidex as well. Like the doc told me if I have a problem with it, I can stop and try something else. Please don't let fear make your decisions for you. Any reading you can do that is basic facts and clinical infomation will really help you as it did me. It takes the fear factor down and makes it more managable. Okay the teacher in me will get off my soap box.
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don't forget your big purse janis
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Good luck Janis, make room for me!
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Janis, I too, would not have chemo and I get treated differently from patients who did agree to chemo. I get no blood tests, no scans, no anything unless I have a symptom of met or recurrence, then it's usually only "we'll check it again in 3 months." Those of us who opt not to have chemo need to do a lot of research to find out what routine testing we should be having and insist on it--or do like I do and get it from my PCP. As a former chemo nurse I can tell you that chemo is a BIG money maker for an oncology practice and it's affiliated hospital. Docs don't like to "waste" time on patients who aren't making them money, I've noticed. hat's one reason it took over 10 years for OncotypeDx testing to become standard.
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Good luck Janis with the biopsy. Move over ladies, I'm jumping.
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I'm bringing the Cheetos!
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NM, Your comment is for chiluvr, not janis, but it makes sense that if you take no oncology meds., it probably would be the PCP following up with you.
janis, Hope the NOdule on the your thyroid turns out to be a B9 little NOthing. Good Luck! The ladies are all with you, in your pocket munching on the Cheetos. If they leave too much orange-y residue, a little Oxyclean will do the trick.
KittyGirl & chiluvr, I don't think it is directly related to breast cancer, but there seems to be quite a few women suffering from Fibromyalgia. I know Barbe also has it. I have had it since 2005. Didn't even get any treatment til about 2008, and nothing that helped that much. This year I started on Effexor which does help me (and cuts the hot flashes, a bonus!) Anyone else here with Fibromyalgia?
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How do you post a new thread or start a new topic on here. I can't figure it out. I know when I first signed up on here, I did one, but how I did it is a mystery.
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Janis praying for B9 and I'm jumping in.
Chilvur I am taking tamox and someone in the beginning reminded me that if I can't take the SE's I can always quit taking the med. My followup with my MO will be every 3 months for first two years, then every 6 months for the next 3 years then yearly for life. He said he will go by how I am feeling, CBE, and bloodwork which includes tumor markers. Also for now MRI and Mammo but once I have my BMX I will be able to quit having those.
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Zumbagirl, in the forum index, click on the forum you want to create the topic in. On that page, you'll see the link to create a new topic.
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Thanks Kay
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Forgot to add... OG, You learned everything about your B/C, what's a little map reading now? Congrats! I'm sure you'll do great, but if you have a crazy mix-up just remember we like a good laugh.0
