natural girls
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Deni - My advice is go to breastcancerchoices.org and read about tam. I took it for 2 weeks at half the dose. Those were the worse 2 weeks of my life. Also read up on DIM. I have no clue why you would even need it since you are ER- ??????? I'm sure will get a lot of help from all the wonderful ladies here. Good Luck!
Patty
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Deni ~ You don't have to look far on the internet to find a lot of concern that taking Tamoxifen for 5 years may actually support the development of hormone-negative bc:
http://hormonenegative.blogspot.com/2009/08/tamoxifen-leads-to-increased-risk-of.html
I could be entirely wrong, but it sounds like your onc is grasping for treatment options and is not up on this recent research, which -- although not exactly your situation -- would certainly cause me to steer clear of Tamox. Deanna
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have to agree, it does indeed sound like he's grasping at straws here! I have NEVER heard of taking tamox for ER- what the heck??? 2nd opinion! Keep us posted!
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agree, second opinion needed on this one....
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Deni, I've been on Tamoxifen for over a year. I have the hot flashes (which have gotten better as time has gone on), the irregular periods, and the fun new vaginal discharge to reassure me that the Tamoxifen is likely to be working for me. The side effects are things that I can easily tolerate to keep my highly ER+ from showing up someplace else.
My best friend has been on Tamoxifen as a preventative for about a year and a half. This year she had her first mammogram in a decade that didn't show something new or suspicious.
My sister-in-law was on Tamoxifen for about a year while it was still in clinical trials. Once it went off trials, she wasn't able to afford to stay on it, and a couple of years later, she was diagnosed with mets. I always wonder if she would still be here if she had been able to stay on the Tamoxifen for the full 5 years, or if she would have at least gotten a couple more years because that would have made a huge difference in her youngest daughter's life.
It sounds like your on oncologist is either worried about you developing a new, ER+ tumor, or that he is desperate to hold on to a patient. You are in a much better position than any of us to know which is the more likely scenario.
I am doing the Tamoxifen, but I also changed my diet, added a number of vitamins and natural supplements and increased my exercise. I've lost 60lbs so far to reduce the volume of hormone containing fat in my body,
One nice thing about the Tamoxifen induced side effects is that unlike the chemo and rads side effects, they apparently subside quickly when you stop taking it. So, if you decide to try it and find the side effects are too much for you, they should clear up quickly when you stop.
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Yeah, my gut is telling me not to do it. He is actually the third onc that I have seen who has recommended tamox - but maybe because there really is nothing else! He has written several books and has done lots of research. His research has shown that the receptors don't matter. That the key is the oblideration of estrogen production. So far, I have followed my gut in going with alternative treatments. And, so far I have been proven right (rads would have been too risky for my heart/lungs and it was shown that chemo would have no benefit for me). He is the most open minded onc that I have been able to find. He is compassionate and sees benefit with vitamin c treatments (which I am currently doing) and diet - which is more than I can say for any other onc I have seen. I have seen the studies online that say both that more aggressive cancers can result from the use of tamox and also that ER- just isn't applicable (he disagrees with these studies). I have to say that he is OK with me NOT doing the tamox. He gave me the prescription just in case. He said he is there for me no matter what I decide. And, that if I don't do it, we will just monitor more closely. In addition to pointing out that my risk of recurrence is 35%, he also mentioned that the chance of no recurrence is 65% - added to that the benefit from diet, exercise, etc. - the odds are in my favor!
Thanks for your opinions ladies! Spring - glad to see you are on the mend!
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Deni, I've heard mention of tamoxifen being used in some ER- cases, and apparently the thought is that it would prevent a new ER+ cancer from developing. I think you have to go with whatever feels good for you, because doing something just because it's recommended and then suffering or stressing over it, isn't good for your body either.
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Hi gals, how is everyone today?
I sent the vitamin D study to my friend who runs a sensory/consumer sci dept for an R&D facillity at a massive cosmetic company and this is what she said: The study you quoted looks significant but I would not worry about it. It
is a derived correlation between Vit D and BC. There are so many recent
studies touting the importance of Vit D.@deni - what hospital are you going to? I live inNJ too, which is why Im asking. My onc is looking into me NOT taking the tam bc I am borderline ER neg at 25% as my concerns over the recent BC headlines re ER negative tumors post tam. He is reading all of the ER neg articles discussed in this thread. I also have him looking into the Indole therapy as shotgun to tam to help the ER neg in case I decide to go on tam. What it comes down to is what you are comfortable with. I received good advise from a recent BC friend; no matter what decision you make you have to feel right about it.
@Lydia - colonics rule! I can't wait to go again once this crap is over with. Enjoy the meeting.
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Good morning all.
I saw my surgeon yesterday about getting a bi-mast. He told me that having that done does not decrease my odds at all for a recurrence. He said since I had a positive node that I would get cancer somewhere else. Yep, that's just what I wanted to hear. I had a list of questions for him. He answered them with a shrug of shoulders or a nod or just a no. He humiliated me and seemed very put out. After what little I heard (whenever he was talking to me all I could think of was "why is he such an a**hole?) He said if I wanted both breast removed he needed a mam on the good one. I said I do not want a mam could I get an ultra sound instead? He flat out said no. I said why not? He said those are not that good at detecting like the mams are. I said really then why did a mam not pick up the cancer in my bad breast for years? In fact I found it myself. He had no answer for that. As he was leaving the room I said wait why are you making me feel stupid? That caught him off guard. He said I'm not I just want you to understand all this. The nurse took us down (my hubby was with me) to get the mam. As we where sitting in the waiting room I really started to steam. I told my hubby I'm leaving. Thankfully no one else was in the waiting room because I stood up, dropped my robe and got dressed and we walked out!!! I'm going to send him a letter telling him what a butt he is and that I have fired him. I'm also going to send him a bill for our time spending waiting on him. We sat in the room for well over an hour.
Today I turn 55!!! and I'm so thankful to be alive!!!!!
Patty
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That sounds like a horrible experience. Some doctors really are butt-holes! You are a courageous woman to stand up to him like that! Good for you. I'll bet he never received a bill from a patient for their time before. But you are right, we wait and wait on some doctors so that we can be honored by their sparing a moment for us. Find a doctor who is compassionate and knowledgeable - they do exist!
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Patty, I am not sure if it is just because it is Sept 11th, but your post made me cry. It must be so tough to have a birthday on this day, but you are so right to be thankful to be alive. We all must remember this, as remember the heartbreak we all felt in 2001. I am not sure I will ever be able to get through the morning of this date without losing it. It still feels like yesterday. On top of that you have to deal with such an ass for a doctor (pardon mon francaise). There is no other word for him. Sometimes I wonder why certain doctors even practice. I was lucky that my doctors where there for me emotionally, but they still have a mindset that cancer is going to get us no matter what. I think it is such a terrible attitude. It takes hope away and optimism and leaves us feeling powerless. This sense of doom CAUSES cancer. Don't they get it???? All I can say is that we need to remember that doctors are human and they are often WRONG. They cannot measure what is in our hearts. They cannot measure our will to live, and therefore they do not know it all. There is a lot we can do to prevent recurrance and we are all helping each other here to find out how. Just keep the faith. And remember, on this day of all days to remember, that we always need to keep hope alive. We cannot let this enemy take over our hearts and minds. And we are all here for each other, even when our doctors have thrown in the towel. Celebrate your birthday dear sister. You deserve it! I hope the sun is shining brightly in your neck of the woods. If not, since it is a beautiful morning here, I am sending you some sunshine. May you have a wonderful day.
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Patty, good for you for standing up to that 'hole! And glad you fired his but. Good to be 55 and alive, and you will stay that way for 55 more.
To Deni, what exactly do you suppose your onc means when he says "he feels you produce a lot of estrogen"? How does he know this? Has he done hormone testing? Or does he just smell it on you, or what? Sounds a little funny to me....
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Hi Calypso, his feeling is that woman with "hour-glass" figures produce higher levels of estrogen. I also have some bad hormonal shifts during my menstrual cycle, which he feels is an indicator as well. I did have hormone testing done and he read the results of this as well. Actually now that you mention it, he did lean in and take a big whiff - now I know why (LOL)!
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Vivre - Your post made me cry. I'm a teller at a bank sitting here crying lol. Thank goodness I'm in the drive-up!!!! I was watching fox news this morning and they replayed the events of 9-11. It was like it just happen again. We shall never forget!!!!!!! Thank you so much for your wonderful words of encouragement! The sun is shining here in Springfield Oh.
Calypso - I cried through Vivre's post and read what you said to Deni and started laughing so hard!! Thanks I needed that too
!!!!!!!!!deni - I have fired my surgeon and onc! Now I need to find new ones. This is such crap with these docs.
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LOL Deni! Long live us pungent women! It sounds like your onc is doing his best, and those are the docs we need. (But they could be conscientious and respectful, and still wrong!) I guess the days of "doctor knows best and that's that", are gone. And that's good, as we are all smart, strong (and pungent) women! Hear Me Roar! lol ... to myself.
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I heard your roar from here! Yes, I do think he is doing his best. And, as I have said, he is the current onc of several oncs before him. He is open minded about treatment and does not shutter when we talk about my protocol. He is supportive of many aspects of it. Which is promising. I am mostly working with my naturopath at this point anyway, but want to have an oncologist on my "team" for screenings and interpretations of results.
Viv - your post was very touching. It is a dark day here in the northeast where the events took place. I will never forget that day. My sister used to work in Manhattan but decided not to go in to work that day (pre-events). I watched the towers collapse with my boss in his living room (at the time I was working out of his home office). We were speechless and just started to cry. He turned to me and told me to get out of there and do what I need to do. I ran to pick up my daughter from pre-school. I was the first parent there. Then off to the elementary school to pick up my daughter who made a fuss about having to leave school because she just didn't understand. As I left the building with her, other parents were running into the school to pick up their children. No one knew what would happen next. I know people who died in those buildings. I was at the funeral of the husband of a friend who died that day. I will never forget her walking up the aisle of the church holding one son in her arms while her other son walked beside her, tears running down their faces. It was heartbreaking. We will never forget. We should never forget. We are changed forever. Love to all.
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seaotter - this may sound funny but i found my current onc by googling "open minded oncologists" in NJ. I had tried every other search possible and was not happy with who I was finding. When I found this new one, he seemed at least to not be so peg-holed into only what "traditional' medicine has to offer. You might try a search like this. It might just give you a few names in your area. Just a suggestion.
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Thanks deni. I have googled everything possible, I thought, except that lol.
Patty
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Definitely worth a try! And, Happy Birthday to you, Patty!
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I am so pis*ed at your surgeon for treating you that way. How dare he f**k with our Patty! Makes me want to call Tony Soprano down from Mahwah, NJ to have a "conversation" with him.
But I am so proud of you for standing up to him. I think you scared him with your questions. He told you a lot of total whoppers-- so it is no loss to dump the dumb f**k.
My friend wanted to get the second breast off as a preventive. When they removed it they found a cancer that was not visible on the mammo she had a week before. You have a history of having cancers not visible on mammos. This is a no-brainer.
Okay, we need to find you a cool surgeon. Ann Fonfa of www.annieappleseedproject.org might know one. She used to live in the NY area. Ask for her help. She's a saint and knows everybody or knows people who will know people. Contact her thru her website. Tell her your predicament. Ask if you can phone her.
Item two: Let's get this party started!
Happy birthday, dear Patty, happy birthday to you.
We love love you, we'll help you,
Happy birthday to you!
Love, anom
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Happy birthday Patty! And good for you to tell your onc to take a flying F. What a jerk. I had lobular that didn't show up on mammo or sonogram, yet it was visibly changing the shape of my breast. Back then I didn't know bc came in different varieties. Apparently the surgeon I saw didn't know either when he said he wanted to 'watch' my 'aging breast tissue' (i.e., the TUMOR that was making my nipple invert and harden a whole quadrant of my breast).
I wonder how many of the doctors who are responsible for dx'ing us can even name 10 different kinds of bc? They CLEARLY don't know all that they should, and they SHOULD know a heck of a lot more than we do. It SHOULD be common knowledge that mamms are good for screening, but they're not perfect. I've had nearly as many sonograms as mammograms. Sonograms aren't even all that expensive. For heavens sakes, you should be getting a sonogram AND an MRI!
deni, I am still floored that tamoxifen is being recommended for your er- dx. Does your doctor know how to interpret the results of the hormone tests? It doesn't sound like it was testing he ordered. I rather doubt yours went to the same school as my onc, but my onc not only refuses to conduct hormone testing, he says the 'information isn't useful.' Yet, he had no reservations about prescribing tamoxifen. I took it for 26 months. I didn't really plan to stop taking it, it just sort of happened. When it came time for me to fess up, I swear, he nearly yawned. I guess I should say former onc. I have so little confidence in his practices that I haven't been back in over a year.
My heart goes out to everyone suffering the aftershocks of 9/11. Anniversaries are traumatic.
And thanks everyone for suggestions on googling oncologists. My mom's neighbor whose ovarian cancer was miraculously found and treated when it was still a stage 1 now has it again. Don't know the details. The googling tips might come in handy.
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Hi Althea, I was floored with the tamox recommendation too. When I last saw him, he talked about possibly trying some hormonal therapy. I was under the impression he meant progesterone cream. But, to my surprise, he actually meant taking tamox. He is a believer that ablation of estrogen production is effective in preventing recurrence. And, even though he acknowledged that I wouldn't have as good a result with the ER-, he believes that it would improve my chances of not having a recurrence. I don't feel good about it and am not going to go on tamox. The hormone testing was actually done by my naturopath. He has a different opinion about hormone therapy for me. He doesn't think it is a good idea at this point and wants to wait. My next step is to try and find someone who is really an expert in hormone balancing specifically relating to bc. Haven't been able to find this person so far! Did you have bad SEs on the tamox?
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deni, it's the aromatase inhibitors, such as arimidex, that attempt to shut down the body's production of estrogen. Tamoxifen acts by attaching to estrogen receptors, presumably camping out on the receptors before something cancerous does. So the recommendation to take tamoxifen doubly doesn't make sense, given your er- status and the reason your doctor expresses interest in you taking it.
My SE's on tamox were manageable. The hot flashes were really bad. I had nausea also every time I tried to step up my activity. The reason I stopped taking it started out as temporary on a weekend I had a stomach flu. Then a day turned into a week, into a month. My ongoing problem is fatigue, feeling like a deflated balloon in need of more helium. At first I blamed chemo, surgery and rads. But two years plus later, I began to suspect the tamoxifen. Got rid of the hot flashes, but the fatigue unfortunately is still with me. At this point, I suspect rads knocked my thyroid out of whack. Local doctors not helpful, except for my friend's chiro who suggested iodine supplements. Now I'm 'self diagnosing and self medicating' (a direct quote from another former doctor of mine) and feeling better bit by bit. I have a whole lot more confidence in taking iodine than I ever did with tamoxifen. At least I don't have to worry about side effects of uteran cancer or blood clots.
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Althea - it doesn't make much sense to me either. I am, however, very slightly (3%) PR+ and I think that he wanted to try to work off of that. Does that make sense?
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Patty,
Friday I will have my surgery - prophylactic right mastectomy. I already lost the left one to bc. Both my doctors ( Onc and Surg) have supported me with this decision. The surgeon explained to me that if I already have mets, even if I don't see it yet ( but he thinks I am fine) the surgery will have not effect on that, but I am reducing the change of recurrence to that breast to ZERO. After removing both breasts we still have about 2% left of breast tissue that is located in the abdomen. So the risk of bc is not 100% eliminated, but it is very rare (he doesn't know anybody that got bc in that area). I decided, for my piece of mind, to remove both my breasts. But this is just me.0 -
Patty,
Friday I will have my surgery - prophylactic right mastectomy. I already lost the left one to bc. Both my doctors ( Onc and Surg) have supported me with this decision. The surgeon explained to me that if I already have mets, even if I don't see it yet ( but he thinks I am fine) the surgery will have not effect on that, but I am reducing the change of recurrence to that breast to ZERO. After removing both breasts we still have about 2% left of breast tissue that is located in the abdomen. So the risk of bc is not 100% eliminated, but it is very rare (he doesn't know anybody that got bc in that area). I decided, for my piece of mind, to remove both my breasts. But this is just me.0 -
Patty,
Friday I will have my surgery - prophylactic right mastectomy. I already lost the left one to bc. Both my doctors ( Onc and Surg) have supported me with this decision. The surgeon explained to me that if I already have mets, even if I don't see it yet ( but he thinks I am fine) the surgery will have not effect on that, but I am reducing the change of recurrence to that breast to ZERO. After removing both breasts we still have about 2% left of breast tissue that is located in the abdomen. So the risk of bc is not 100% eliminated, but it is very rare (he doesn't know anybody that got bc in that area). I decided, for my piece of mind, to remove both my breasts. But this is just me.0 -
Patty,
Friday I will have my surgery - prophylactic right mastectomy. I already lost the left one to bc. Both my doctors ( Onc and Surg) have supported me with this decision. The surgeon explained to me that if I already have mets, even if I don't see it yet ( but he thinks I am fine) the surgery will have not effect on that, but I am reducing the change of recurrence to that breast to ZERO. After removing both breasts we still have about 2% left of breast tissue that is located in the abdomen. So the risk of bc is not 100% eliminated, but it is very rare (he doesn't know anybody that got bc in that area). I decided, for my piece of mind, to remove both my breasts. But this is just me.0 -
Patty! Happy Birthday to you!!!! yay!!! What an ass your onc was, shish!!! You poor thing, my heart was aching when I read your post, NOONE should be talked down to and made to feel stupid, no excuse for bad manners either! And Anom, is right, the information he gave you was wrong to boot!!
Vivre, your post made me cry too!! one of those days! I have to say, there was a very important highlight to my day, had my bloodwork done on Wednesday for my 2nd 4 month follow up and all was normal!
Deni, I have talked to numerous doctors about the PR factor in the pathology, not one could explain what it means, in fact all said they don't know why progesterone is even mentioned, because they have no idea how its involved. I think we do, its a protective hormone!
Have to tell you all, I read Glamour magazine this month because it had an article on how to lower your breast cancer risk by 23% or something like that, anyhoo, after reading it, I wrote to them via their website, outlining everything they were missing in the article, I just felt the need to vent! I got an email back saying they were forwarding my email to the editor and they would be in touch, I would LOVE to have an opportunity to get more info out there!
peace sisters
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Excellent Fairy! How wonderful for you to share your knowledge!
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