Starting Chemo in Nov. 2011...anyone else?
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Beth- Thank you for posting. We care about you and missed you. I'm glad your new doctor is helping you. You've been through so much. I hope they can continue to give you relief.
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beth ~ Sorry to hear of your wound issues I had one on my leg a few years ago and the debridment was so very painful. I hope that you heal very, very quickly. I am glad to read that in spite of this you are doing well. I totally get being "absent" from the boards. I have taken a break a few times, too. Please take care of YOU.
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Thanks everyone. My oncologist was talking about calling in hospice and I went down into a deep depression. I am doing so much better now. I have the open wound and cannot do as much as I would like but I can do some things. I really wish I would wake up from this nightmare. I am stage IV and need to enjoy each day. I remember reading once that "Cancer is a word, not a sentence." Just keep believing everyone! All of you helped me so much in the beginning. I remember being less scared then. Thanks for being patient with me!
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Hi, Beth. I am glad that you are feeling better now. Depression is certainly understandable, especially with your wounds as visual reminders. Are you seeing those babies soon? I know they always bring you great pleasure!
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Beth - You've helped me so much, too, especially when I went through steroid psychosis. You've always had a sunny disposition and bring a smile to my face every time I think of you. The picture of you holding the babiez is a good example. I have no doubt that you will find joy in each day.
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Bethu,Good to hear from you. Not being able to do what you like can certainly bring you down. Stage 4 sucks. Enjoy each day,living well is the best way to tell cancer to back off.
Be well
Keep all posted.
Nel
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Bump
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Hi everyone. I thought I tell you the latest. Went to gastroenterologist (who comes up with these titles?) to discuss a screening colonoscopy and he scared the bejeebers out of me. To make a long story short I've had esophagus strictures dilated in the past, but it had been about 13 years since anyone checked it out. He said that's one of the first places breast cancer will travel (never heard that before, I think he was trying to scare me and it worked) anyway, had the colonoscopy and endoscopy and he found no cancer (he seemed disappointed).
Also had a bloody discharge from good breast for about a week, the last week in April, breast surgeon wanted diagnostic mammo and sonogram couldn't get in for that til this last Thursday, nothing found in either of those tests, so now waiting to hear from breast surgeon if more tests are warranted. Sonogram tech said maybe MRI. I don't know why I can't feel good about them not finding anything, it should be good news, but if there's something there I want them to find it early. Something caused a bloody discharge. I would like to know what caused that.
Beth - I hope you're feeling well enough to enjoy every day.
Hope everyone else is doing well.
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Grandma-That sounds scary about the bloody discharge. I am not sure what things could cause that, but I wonder if a burst cyst might have been the reason. I know that cysts are made up of water, blood, pus, and it make sense to me that if one burst inside your breast, it may drain out of the nipple. I remember once my mother-in-law went to the doctor because she had found a lump, and the doctor said it was a cyst and drained it with a needle through her nipple. Very unpleasant, but no cancer. I know how you feel about wanting them to find something if it is there. I have never understood the standard of care that says no need to give MRI's or scans or anything really unless we have symptoms. I feel like that if they caught it early the first time and therefore believed they had reason to be hopeful about it, then why shouldn't time be of the essence with a recurrence. Did you get to see the breast surgeon yet to find out what he thought about it? Also, I have wondered myself about the colonoscopy. I had mine about 9 years ago, and I have read some opinions that say there is a connection between colon and breast cancers and other opinions that say there is not. So for the last 3 times I saw my oncologist, she has asked me about getting one. I told her that the last time I had one, they said I was good for 10 years (2 more now) and she said ok. The next time when she asked again, I said that I wasn't due yet and asked her if I needed one because of the BC, and she said no, not til my 10 year time was up. Then the last time in March, she said she had written down that I was going to get one (but I had meant in a year or two). So since she keeps harping on it, I am wondering if I should try to go ahead and get one a little early. I am sure my gastro doctor would say ok, but my insurance company does not pay for extra screenings, so I don't think they would think I needed one for another year or so. I am perplexed as to whether or not to have one now. Like you, I have only ever heard of BC spreading to bones, liver, lungs, then brain.
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Grandma ~ I hope you have had some good news. Please keep us in the loop. I can understand how anxious you are with the symptoms you experienced. I will pray that your results are good. I never realized that the esophagus was another place where breast cancer spreads easily. I hate, hate hate that our fear level is heightened because of the experiences we all have gone through.
Bahamamom ~ I am of the same mind as you...I don't understand why we aren't allowed to have mri's, scans to make sure nothing is lurking inside of us. I am particularly annoyed because the radiation oncologist, (my insurance contracted with Univ. of CA cancer treatment center) recommended a yearly MRI because of the denseness of my breasts, but the radiologist in my network denied it twice, saying it's only necessary to have a mammogram once a year at this point. What the h**l? Since the MRI was the test that definitely found the cancer and got me diagnosed, what makes them think it isn't necessary? I just don't get it. As far as a colonoscopy, I really need to do that, too. Old age and cancer ain't pretty!
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Linda, I haven't heard from the surgeon yet. I've called several times and neither she nor her nurse has called back. So I'm playing the waiting game.. Hopefully I'll hear something tomorrow. Had my follow up with gastro doc today. Everything's fine in that department, but he wants me to have another colonoscopy in 3 years he said, because of my cancer history. We'll see, in three years, if insurance will pay for that.
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I am reading this and really wondering WHO is determining our health--certainly not the doctors it seems--that the INSURANCE companies with no medical expertise AND only their pockets of concern tell us and the doctors what tests we can and cannot do-- ITS WRONG!
My ONC got around mine somehow-- I just did a PETSCAN on Monday (not great but not terrible results) and that was just 4 months after the previous one. She wanted to see if the treatment was working (its sort of working ...). But she said she would order whatever was needed and find a way around the insurance company's crap. Press them!!!! They are YOUR ADVOCATE and your caretaker.
GrandMaV Bahamama Linny Hopp and others--(((hugs))
Q
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Finally have an appointment with breast surgeon. They will evaluate to see if I should have an MRI or a ductogram. Appointment is not until June 22. Not very far off, but seems like it is.
Quaatsi, Your doctor sounds awesome. I agree that insurance companies have way too much power. The insurance companies "managed care" is crap.
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Grandma - That wait stinks! Hope you are managing thru it.Hope everyone is doing well this AM. I am exhausted this AM,out with a group of cousins last evening, had a wonderful time, but way past my bed time! Hmmm, is it my age or cancer or a combo.
Best,
Nel
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I had my appointment yesterday at breast surgeon. She doesn't think it is anything to worry about, but because I'm a breast cancer survivor wants to do a breast MRI. Can't do a ductogram, because I'm no longer having a discharge. I'm very apprehensive about the MRI because I'm claustrophobic. She says it takes about 45 minutes. That's a long time to try to control total panic. She also told me about one of the imaging places here just got 3D mammography 2 weeks ago. I'm doubting my insurance would pay for that, but I'm going to call them to see.
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Grandma, I hope that your breast surgeon is correct that the discharge is nothing to worry about. I did want to tell you that my mammogram place started offering 3D right after our diagnoses. What they do is just charge $50 to people who get them since they want to use them and most insurances don't cover the additional costs. Then the insurance pays the difference, which I think is what the regular mammogram would cost. Now all that being said, I really don't know how that test compares to the MRI, as far as what all they may be able to see. I hope whatever test you get doesn't stress you too much.
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Hello everyone. After reading your posts, I realize how much I miss all of you. My remaining implant fell out in March. My cancer had taken all the skin from it. This wound will not heal. I have wound changes three times per week. I am scheduled for debride next Tuesday. I will be asleep when it happens. I cannot stand for anyone to touch the wound. It is very painful for me. I have skin mets on my side which hurt and nothing can be done for them. I was on have Havelene but it knocks my counts down and I cannot take it like I am supposed to do.
I have no energy and I was telling my husband that I need to celebrate getting out it bed each day. I'll try to be better about checking in more. I really miss each of younandvyour encouragement! I hope you have a Happy 4th or at least get toenjoy the day!
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Beth, I'm so glad to hear from you. You have been on my mind every day. I'm so sorry you're have such pain with the skin mets. It sounds so awful. Have your docs talked to you about taking supplements to help you have more energy and help get your counts up? Mine had me on iron and B12 during chemo. I don't know if helped or not, but I don't think it caused any adverse reactions. B12 shots are even better if your doc approves. It works faster to help with the fatigue. I hope you can get enough relief to find enjoyment in every day.
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Hi, Beth, I have been thinking of you and wishing you strength to deal with your continued pain. Hopefully, the debridement will help ease some of the hurt for you. That wound sounds really awful. I am also praying that you experience lots of enjoyment each day.
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Hi Everyone...I have been thinking about all of you and wanted to come by to check and see how you are all doing. I am sorry to hear that some of you have had to deal with pain, lack of energy, and especially that wound care (Beth). I had a leg wound that wouldn't heal a few years before I was diagnosed with BC and I have to say, it is such a painful thing to deal with. I hope that having the wound debridement will make a positive difference and help with your pain.
Grandma ~ I am hoping you have had whatever test your doctor recommended. I know the MRI is confining, but I have managed to get through 3 of them with a little help from Valium! My insurance company won't approve my having them yearly as the oncology radiologist suggested. I hate that we have to be denied tests that can make a difference in how soon we need treatment. .
I have my mammogram and see a new oncologist at the end of this month since my previous doctor moved. Two of the teachers I work with are patients of the new doctor and love her, so I am hopeful that I will be happy with her as well. I am always very nervous at this time of the year as it creates a serious case of the jitters. I know that all of you can relate to that feeling.
I hope that all of you are feeling well and able to enjoy each day. Take care and know that you are all in my heart.
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hello, everyone! i've been reading back, trying to catch up with each of you.
Beth and Quassti, it breaks my heart to think about what you're both going through. i hate this frickin' disease, the insurance companies and yes, some doctors, too. i guess the only thing positive i can think to say is that the support on this forum is incredible and so loving. even after all these years, i still care about each of you. please know that you're supported by me with huge doses of positive thoughts.
grandmaV, i have 3D mammograms and what bahamamom said is true for me too ... they charge $50 that the insurance won't pay. i figured that for that amount of money, i'll choose 3D every time. my onco told me yesterday that if the 3D mammo is clear, he doesn't need an MRI, even though the radiologist group wanted me to have one. as my onco said, they might have a monetary investment in that MRI. we laughed.
i'm so happy to catch up with some of you. i'll try to stay more connected.
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Yaya, it's good to hear from you. How are things with you? Thanks to you and bahamamom for the info on 3D mammograms. I cannot do an MRI. Talked at length with the nurse practitioner about it on the phone and I'm very sure it would be a waste of time to try. My anxiety was going through the roof. It just kept building the closer it got to the appointment. So I asked her to refer me to the imaging place for a 3D mammogram and now have an appointment Aug. 17. Relief. I read up on them after you guys recommended them and some in that field do feel it is better than an MRI. It will cost me $60.00 out of pocket, but I feel like you that it's well worth it.
I wonder how Phyllis is getting along? Haven't heard for so long.
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Grandma ~ So glad you got to avoid the MRI. I have always had anxiety when I had them, but made it through with the help of a Valium! I am going to ask about 3D mammograms, but since I have Kaiser insurance which is an HMO, I won't be able to request one if they don't have the capability in their system. Like you, I would GLADLY pay the $60 to have one.
YaYa ~ so good to hear from you. I am really glad that we still have a way to be in touch with women who "walked the walk" at the same time that we did. I think we are definitely connected with all that we endured together.
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Well, ladies, we are coming up on our 4-year mark for our breast cancer diagnoses. I am like Linda, who has mentioned before being apprehensive this time of year because we are nearing this same time frame and experiencing some nervousness along with the deja vu feelings that brings. August will be my yearly gyno visit, September my 6 month onc visit, then October my yearly mammogram. I can handle all of those except for the mammogram. For that, I have to have someone go with me, usually my husband, because I am so afraid that I will freak out if they say anything other than, "All is well." Grandma, have you had the 3D mammogram yet? Beth and Quaatsi, hope you are feeling better.
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bahamamom - my appointment is Aug. 17. My daughter just turned 40 and had her first mammogram. She was called back for more pics. She and I were both nervous. She got her letter yesterday, no evidence of breast cancer. I was so relieved. Took my mind off of my up coming mammo, though.
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Grandma, I know you are relieved for your daughter. As scary as our diagnoses and treatments were, I am sure that you were as worried for your daughters' chances of having BC as I was. We want to protect them from all that we can. My oldest has had her first, and it only showed some calcification, and the other two are 8 and 11 years away from getting their first. Hopefully, the research will continue to grow and produce even more effective treatments with fewer side effects in case our daughters should ever have to deal with BC.
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Had my 3D mammo today followed by sonogram. They found 2 small (less than half a centimeter) complicated cysts behind nipple of left breast that could have been the source of the bloody discharge back in April. He didn't think it was anything to worry about and is rating it Birad 3, abnormality with high probability it is benign (98%). His recommendation is to wait 6 months and recheck if I'm ok with that. He said if I can't sleep from worry to give him a call and they'll get me in for a biopsy. So I decided to wait and talk with breast surgeon first. I have an appointment in September, but I may have to call them before that. I think I'll be ok with waiting 6 months, but I'm not sure.
I hope everyone is enjoying each day.
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Grandma-I think the key for you will be the level of worry over the next few months. And it is hard to know until you have to start the waiting. Unfortunately, I think we always worry some anyway, just because of our past history with BC, so I am sure I would not welcome any additional reasons to stress. I am hoping that your breast surgeon can guide you in choosing whether or not to wait and see with this new finding.
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grandma v. Sorry for late reply. I took off to camp with my horse and get my priorities in line and basically pull myself together. As you may see by the typos my fat fingers are ticking out a reply on my little cell phone.
Knowing and Not Knowing-- it seems that is the thing that gets many of us. It isn't the cancer itself but the worry that is A cancer in and of itself.
Use this time to watch how your psyche changes and see what you can control in order to enjoy each day. When you find out its nothing ( whichnis what we all hope) then the next "scare" will be easier since you have done THIS work.
I wish best for you and for all of us.
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Thank you bahamamom and Quaatsi. It's so nice to be comforted by you. We truly do have a unique bond. Quaatsi your words of wisdom are much appreciated.
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