No PBMs for now - stepping back
Comments
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Well, it's been a long and stressful journey, but after 8 months of consideration, contemplation and research, I have finally accepted that the universe is sending me a message: it is not the right time. As I have gone through the process of having consultations, contacting insurance, scheduling more consultations and tentatively scheduling PBMs for my LCIS, there have been so many signs (roadblocks?) that I began to wonder if I needed to reconsider. The final message was the other night. I was scheduled for 2 appointments (second opinion bs and ps in my insurance plan) next week on the same day. As luck would have it, the only day they could be was the same day I had to run an evening function at work, so I was plenty stressed out about timing. Then, I received a recording reminding me of the appointment and that oh, by the way, Penn Relays would be that same week, I would need to allow extra time, take public transportation, etc. (Penn Relays, for those of you not from this part of the country, are a really big event that ties up traffic at the Univ. of Penn. in Phila. and takes up many parking spaces.) Okay, greater force, I hear you. I canceled the appointments, am cancelling the surgery date I had booked for July, and made an appointment with my regular bs for next week. I figure that if the universe is sending me so many signals, I am stupid if I keep ignoring them. I will continue the current regimen of close monitoring for now. As much as I wanted an end to the situation, I realized that I was not psychologically ready. Last night was the first night in months that I have slept through.
For those of you who are considering PBMs, I wish you strength and guidance. It is a terrifying decision - definitely not one to rush into. If/when I make that step, I want to feel that it is the absolutely best decision for that time. For now, I guess I will have to learn to live with the uncertainty.
Anne
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Anne,
I am happy for you that you have come to a decision and you are feeing better! I too believe in signals from the universe and I think it is important that you listened! There is a reason!
Best wishes to you for continued good sleep and no stress!
Kimber -
Anne, I too believe in listening to the universe. These aren't easy decisions, as you say. Your decision to step back for now doesn't mean things or you can't change in the future. It sounds like you have a sense of what is best for you for now. That's all anyone could ask. The only thing that matters is what you feel is best for you. I'm glad things are coming together for you.
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Anne...I think you are right on! I was diagnosed with LCIS 12/07 and within a few weeks had decided to have PBM. Met with an oncologist and my surgeon and my PCP. Had even made an appointment with PS to discuss alternatives. Then I started thinking that I was overreacting to a condition that MAY happen or MAY NOT! Seems as though the ONC and surgeon thought I should be on tamox or evista (which I will not do) and the PBM was a good choice. Well, after reading everything I could find on this board and doing more research, I've decided to do what you are doing...close monitoring and no drugs. I've changed my eating habits, am exercising more (lost 12 lbs so far) and am I think a very healthy 57 year old. So, as you said, listen to your instincts. If I end up with BC down the road, I'll deal with the problem then. For now, it's life as usual, with a few modifications. And I'm sleeping just fine these days! God speed.
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Thanks for the reinforcements. I am looking forward to my summer now. I feel a little silly for having gone through all the motions - getting letters for the insurance company from my doctors, telling people, etc. I'm not sure how to explain my decision to the bs, but it was, after all, my own initiative that started the process. I just wish there was someone like a counselor just for this type of process. I would like to be able to talk with someone knowledgeable about LCIS, risks, etc. who would listen and ask all the right questions to help us through the process.
Anne
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Anne, I am so glad that you have found the right solution for you. I don't think you are silly at all for going through the motions. I call that research and preparedness, which are necessary steps in decision-making. Your surgeon will no doubt have a great deal of respect for that.
I hear you when you say you'd like to be able to talk to an LCIS counselor. I wish I could, too. We need someone, as you say, who is knowledgeable about LCIS and the issues surrounding it, in the way that genetic counselors are in that field.
Enjoy the summer and the peace of mind that comes from knowing that you are doing the right thing! -
Hi Anne
I think that is GREAT that you made this decision and feel so good about it. I too don't think you should feel silly about going through all the motions. I too have been going through them. I started the conversation " Newly Diagnosed with LCIS and Puzzled" back in Feb, I think it was. Anyway maybe you read it. I was diagnosed with LCIS after having breast reduction surgery when the pathologist analyzed the tissue like they usually do after surgery. It is in just one small spot but enough for me to FREAK OUT!!! I have been to Breast surgeons and Oncolgists. They don't suggest going right to a mastectomy but try the tomox etc, i do NOT want to do drugs if i can help it. My first thoughts that lasted many many weeks were to do the bilateral mastectomy and be done with it.My main thing was that I need to be here and healthy for my 3 young kids. I don't even have it in my family but you just never know is how I looked at it. But over time I just started realizing that I am ok and I do not need to rush into having this ASAP!! I went back to work after my reduction and starting getting busy thinking of other things, my kids have kept me busy as usual etc. I lost many hrs to sleep as well and then also began to sleep better and better. It was soo nice. For some reason I am waking up again thinking a little more - I am hoping I don't go down that path again, not yet. I very well might do it at somepoint but I need to keep reassuring myself that I will keep a close eye, eat healthy more veggies for me etc. Keep in touch. Allison -
Hi Ladies,
I had an appt yesterday with a new gynecologist. After reading all of my history, she said "you know most of my patients in your shoes have bilateral mastectomies. LCIS is usually in both breasts if found in one, and it's a very sneaky disease".
I had finally just gotten over thinking in that direction and opted to monitor and take tamoxifen. I am doing well on the tamox so far, and I will have my next mammogram in August. I don't know, she just kind of threw a wrench in things for me. Just wanted to vent. Thanks.
Kimber -
The studies I have seen say that most high risk women do NOT take tamoxifen, or get PBMs, even if they are BRCA positive or have a significant family history, at least in these studies.
http://www.ncbi.nlm.nih.gov/pubmed/14588127?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
In this study, only 63% of high risk were offered tamoxifen, and less than half of those offered tamoxifen took it. http://www.ncbi.nlm.nih.gov/pubmed/15112259?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
In this paper, it sounds like 5 out of 30 LCIS patients had PBMs. http://www.ncbi.nlm.nih.gov/pubmed/16910353?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
My gynecologist won't deal with my LCIS treatment options-she is more than happy to do clinical breast exams and handle any below-the-waist issues.
I wonder how many LCIS patients your gyn has seen, and when she took the data. ? How long has she been in practice? I know there are more LCIS patients being discovered recently as more breast biopsies are performed. My oncologist (who is getting ready to retire) said he has seen 'very few' LCIS patients. I really doubt if 'most' LCIS patients get PBMs now-a-days. I know when I looked at a breast reconstruction site which showed photos and gave their diagnoses, only about 1 out of 50 patients had LCIS (without anything worse), and it did not say whether or not that patient had BRCA or a significant family history.
I agree that a genetics counselor has both the therapeutic skills and has some knowledge about LCIS, particularly if you have a significant family history (and thus may be BRCA or other bc gene positive). But they do not specialize in LCIS, or even breast cancer, AFAIK.
But I think the very most important thing is to find what works for YOU. You are not a statistic. -
Kimber,
I was dx'ed with ILC and LCIS more than 3 years ago. No one told me to contemplate the long-range effect of the LCIS after my lumpectomy, chemo and radiation, so I never gave it much thought. I took Tamoxifen for 2 years, got cataracts, then switched to Aromasin, which I take at night (less nausea...I learned my lesson with Tamox). Now I have LCIS in the other breast, am having a lumpectomy tomorrow, and contemplating bilateral mastectomies. My gynecologist (male), told me matter-of-factly three years ago to get PBM, and I was outraged at the suggestion. I think the decision process takes a very long time, lots of research and much soul-searching. Don't decide anything on any treatment unless you are sure it is right for you.
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Peaches:
I'm glad you did what was right for you. Isn't it a woman's perogative to change her mind? EMBRACE IT! You are captain of you ship!!
If anyone had told me even a year before my surgery that I would have had bilateral mastectomies, I would have called them nuts. Seriously. There was some episode of Gray's Anatomy where a woman had prophylactic masts, and I remember calling my mother and saying: GOOD GRIEF. Hey, the laugh was on me!! Who knew that my feelings would change?
You have to do what makes sense to you when there is medical uncertainty, and trust your instincts. Even now . Someone asked me if I regret not having done it sooner, and I do not. All things in their own time...I did not feel my risk was high enough to warrant life changing surgery before the day came.
Your thorough research indicates to me that you take good care of yourself, so enjoy!! If you are not truly compelled to take this journey...my advice is to hold off as you have done.
Be well!!!!
Moogie -
Thanks everyone! My heart and my gut both tell me I am doing the right thing for now.
Kimber -
Saw my regular bs today to go over the decision and talk about future monitoring. Because my last mammo & MRI showed nothing ominous, I can wait until next Feb! I will see her again in August for CBE. Also, I started knocking my Evista down to once every 3 days. I did it before a plane trip because of the clotting risk, found that I slept better and didn't have the urge to binge as much. So, when I got back, kept on that schedule. I see the onc next week. The bs said wonder what he'll say. I say that this is my compromise. Taking the Evista every day last summer was hell, and I've gained 10 pounds even with increased exercise. Since I changed the schedule, I've lost a few pounds. If I can stick to this schedule, I can stand it. Then I'll see what happens next February.
Oh, and one more message from the universe - my cat died Monday night, my lovely little Misty who has been my baby for 16 years. If I hadn't canceled the appointments on Wednesday, I think I would have had a melt-down from the combination of stress. I think God knew I couldn't handle it and sent me those signs.
Anne
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Oh Anne-I am so sorry for your loss. I hope you take just as much time as you need to grieve. I know nothing I say will make it feel better, but please know I am thinking of you.
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Peaches - I'm sorry about your pet. They become part of the family.
I think you did the right thing. If in a few months you find yourself obcessed with worry you can re-think it. But I have to agree with you that it's a pretty big move for something that probably won't happen. It's really all about how you feel.
Would you like a bird? I have one that I'm not loving
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Anne,
I am sorry about your kitty. I had to put down my 4 yr old Corgi from kidney failure two days after I found my lump which was also the same day as my son's 11th birthday. I know how you feel. My best to you!
Kimber -
oh my, I am new to this site and diag. with LCIS, etc. but not invasive ...not encouraged to do mastectomies, but they act like if I don't take Tamox, I will surely perish ! I thought it would be so easy to just take it and IT'S NOT ! I hate it.
It is so reassuring to see so many similar stories ---not that i wish any of this on anyone! but, there really is little out there. the Docs just sort of lay their opinion on us and we're stuck with it.
I could read all day ! and i might just do that...or pray..or something ! thank you all for this helpful info, -
save--sorry to hear you're having a hard time with the tamox--give it time--your body may adjust overal several months. When I was initially diagnosed with LCIS, my oncologist left the decision to go on tamox up to me and said he would support me either way. But over the years (it has been 4 and a half), he has commented several times that he is glad I'm taking it. A friend of mine was diagnosed with LCIS a few years before me and tamox wasn't even suggested. Within 4 years, she developed both ILC and IDC affecting both breasts. She told me she was "so glad I was doing something about my LCIS" and wished they had offered it to her. Would it have made a difference? Perhaps, but she'll never know.
It makes me feel better to know I'm doing something proactively to try and prevent an invasive bc in the future.
Anne
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Hi Save,
Sorry to hear of your struggle with the Tamox. I tried it 6 months ago for 6 weeks and gave up due to extreme nausea and GI problems. I decided to give it another try a few weeks go. This time I started at 2.5 mg for week, then 5 mg for two weeks, now up to 10 mg. I'll keep going up 5 mg and see how I feel. This was the only way I could do it and tolerate it.
I had LCIS, DCIS, and IDC. The finding of LCIS puts me at a higher risk for a recurrence.
I don't like taking Tamox or the Arimidex I tried. It sucks.
LCIS sucks because of the constant surveillence needed to keep an eye on it. No one knows if it will turn into cancer or not. Like most things associated with b/c, it's a crapshoot and we can only do the best with whatever tools are in the arsenal.
I had decided not to go with any anti-hormonal treatment six months ago. But gave it another thought and decided to give it one more try. The jury is still out.
Best of luck to you. Keep us posted on how you're doing!!
Bren
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to Binva, how did you do the really small doses? did you just break the up ...or did you go to a compounding pharmacy ?
Of course, here they think I am nuts to want to start that gradually. I spoke to the oncology nurse about it and she said she never heard of that and looked at me like I had 3 heads... -
After lumpectomy, chemo and radiation, I was on Tamoxifen for 2 years, and felt nausea most of the days. It never occurred to me to take it at night, before bed. I am now on Aromasin, taking it just before sleeping, (new oncologist suggested this) and I have very few side effects. However, Tamoxifen gave me cataracts, which nobody warned of, so that is another drawback to the drug.
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Just to clarify for anyone considering taking tamox--the risk of cataracts is very low--less than 1%--as are the risks of blood clots or endometrial cancer. The majority of women tolerate it well with hot flashes being the most common SE. I was just at the eye doctor 2 days ago for "floaters" (luckily turned out to be nothing more than "aging"--no retinal detachment) and I always make sure they check for cataracts (have been on tamox over 4 and a half years). The optometrist said the risk is very low.
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Save- I've just been on Tamox for a couple of months now. Like BinVa, I've had a terrible time with nausea. I also had problems with feeling fuzzy headed for several hours after taking it (it would hit about 1 hour later, with the nausea). I tried both am and pm. My onc then reduced my dose to 10mg twice daily, still had nausea (lost 4lbs the first month), so now I take Zofran with it, but only when the nausea is real bad, cuz the Zofran has some unpleasant side effects as well. I go back to the onc on May 5th, and we'll see what he says at this point. I wish you luck with it. I feel "damned if I do & damned if I don't" with it, and since they don't really know what to do after 5yrs, I almost feel like I'm delaying the inevitable (I have a lot of bc in my family). We'll, see, since I now have to go for another biopsy for the other side on May 13th! Anyway, good luck and keep trying-it seems to be the only option that you can change your mind on at this time (as opposed to pbms). hugs to you-Denise
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thank you so much..all of you who responded to me about Tamox. Funny thing is, one of my BIGGEST problems with it is, it seems to turn me into a morose, depleted, depressed B _ _ _ _ ! If ya now what i mean. I've only been on 10 mg and i went off it earlier this week and within about 72 hrs, I feel a difference. Like a dark, heavy could is lifting...I hate this. I feel like it's my fault i cannot control myself more and if i was a "better person"" (the tapes !) I would be able to do this !
But none of you have mentioned this specific SE, so I feel even a bit more odd... -
save, don't let yourself feel weird. Everyone's body handles things differently. What you are experiencing might be a rare side effect, but that doesn't mean it isn't happening. I had a "rare" reaction to an antibiotic, told my doctor not to give me that drug again, and he, in his infinite wisdom, thought I was imagining things and gave me a related drug. Guess what? Same side effect. So, trust yourself. If you are having depression, tell your onc.
Anne
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Hi SavemyTTs,
I just now saw your posts. My docs (4) of them were willing to let my try the Tamox any way I wanted ... just so I would give it another try, especially since I had quit Arimidex.
I had tried 20 mg of Tamox at night, then went to 10 mg a.m. and p.m., still severe nausea. Nausea meds didn't help. Then went down to 10 mg at night, still sick, so I quit for six months.
A few weeks ago I decided to try it again my way. I just told my PCP, who is now prescribing all my meds, I was going to start at 2.5 mg a day for two weeks, increase 5 mg every two weeks and work my way up. What I did was bite the 10 mg in half, then half again. If some of the pills crumbled up, I just threw then away. I've been taking 10 mg each night with dinner. This is working for me just fine. My med onc also told me that if all I could tolerate was 10 mg a day that would be fine too.
The problem with nausea is it's much harder to treat once you have it, than to prevent it along the way. The directions on the bottle state to take it with food. Next week, I think I'll add in another 2.5 mg with cereal in the morning and see how that works.
Like I said, my docs are just happy I'm taking the stuff. They don't care how I get to the recommended dose, just that I get there.
I also take Celexa for depression and have for a long time, even before b/c. It's an SSRI and one of the few with a much lower interference with the metabolism of Tamoxifen. Effexor is a good one as it is an SNRI and does not interfere with the metabolism at all of Tamox.
When I was taking the 20 mg right off the bat, I was bitchy, agitated and anxious. Titrating the dose up seems to be working out for me.
Remember .... this is not your fault and has nothing to do with being a good person. We really can't control our bodies. If we could, we sure wouldn't have cancer in the first place!!
You're a great person for giving it your best shot!!!
Let us know how you're doing.
lots of hugs,
Bren
PS - I should add that one of the anti-nausea meds they gave me was Phenergan. That was the worst ever. All I did was cry and get more and more depressed and sleep. That's when I quit Tamox 6 months ago. That's why this time I'm titrating slowly to do everything to avoid nausea and GI problems.
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Hey save- I feel for you! I just got back from my onc, and guess what? Another drug, metoclopramide, to help with the nausea and constipation(from the zofran). I went from being a healthy person who ate all natural, took no drugs of any kind three months ago, til now. Now, I take 3 drugs, and feel sick constantly. I also have been feeling just down, and I'm not sure if its from the drugs or how they make me feel. The larger dosage of tamox also made me feel fuzzy headed, like motion sickness and I couldn't think straight. I too felt much better when I stopped for a couple of days-I noticed the difference within a day. I wish I had some answer for you, but the best I can offer is call you onc and tell him your symptoms and make him work for his salary to make you better!! Good luck & major hugs- Denise
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Mtbmom,
Arimidex made me feel like I was constantly seasick. I couldn't even drive my truck. I quit after one week. It hit me within 2 days, and when I stopped, it went away that fast. Arimidex takes about one day to get to 65% in your system.
I feel like a walking pharmaceutical company!!
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