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Cherry. I was on the CombiPatch- lowest dose for hormonal issues for two years and I think it fed the cancer, I blame that but of course one will never know. Maybe some day they will understand it all clearer but, not now. We can't give up e.v.e.r.y.t.h.i.n.g., what would life be worth if we gave up a bowl of good chili or a glass of wine (for those who drink) on occasion.... We will just have to be diligent and splurge on occasion and enjoy this life we have been blessed with.
Ladies, those who are close to my age, remember the movie the Warriors (street gang trying to get back to their turf). Another gang taunted them and sang out "Warriors, come out to play", "WARRIORS, come out to play". Well, we Warriors aren't playing, we will beat this!
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Hi all!
Just had to check in after being off the board for several months. I skipped an awful lot of pages so I hope you are all doing well. I am on the hunt for another oncologist as my second one is having to take a reluctant early retirement due to a genetic eye disease. I am not lucky when it comes to oncologists!
At my last appointment, he told me that continuing on an AI offered a 2 percent benefit and that I should weigh my decision to continue against the other side effects. He said he was ok with either decision. So far I am getting the prescription but haven't yet popped the pill. I am feeling so much better without it. Decisions, decisions.
Other than that, I have not been working out like I should due to a crazy summer with all kinds of things and my 90 year old molther being hospitalized with an ecoli infection and then after rehab refusing to consider an assisted living place, continuing to live with my rarely working, drug abusing brother, whom she has enabled for the last 30 years. Beyond frustrating. I told my husband I better not have a recurrence over all this, lol. I am working on coming to terms with the fact that I haven't changed her to this point, so probably won't. The control freak in me hates that with a passion. But she's 90, pretty mentally with it, so I'm temporarily laying off the pressure for her to move.
We are trying to finish the last projects to get our house up for sale, three months later than we planned. It isn't critical but we are both ready to give city living a shot for a couple years, with no yard or big house responsibilities. I can't wait!
Hope you are all fine and I am going to log on a little more often. I miss hearing from you all.
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Hi everybody, I had a meeting with my oncologist now. They offer me weekly Taxol with Herceptin in 12 weeks, radiation one months after chemo, Herceptin for the rest of the year with antihormonal afterwards. How does it sound for my diagnosis? I am ER80%, PR60% and my Her2+ is 13.8 according to IHC. Isn't it very high? They do not usd FISH here. I do not have so many hospital choices, everything is centralised here and we basically have three clinics that collaborate with each other. You can always seek a second opinion but everything is so standard. We have general medical insurance that resembles the one they have in Canada. I asked him why he is not ordering Taxotere and he said that it is concidered to be too toxic for my case. AC is out of picture because they want to start with Herceptin at once. But still I am grade 3 and it is pretty aggressive. No scans until symptomatic, according to him they may as well not show anything that is visible. No CA 27-29 or any other tumor markers because they find those inconclusive. I tried to tell him that different testing and scanning are idely used in US but he told me they don't have higher survival rates in US do they? Overall I am so distressed because they cannot give any answers except that yes, the recurrence statistics is approx 25%, lymph mode negative is a good thing but it may spread through the blood. This is all I got. What do you think? I need every piece of advice, thank you in advance, Cherry
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HapB, a lot of people get Taxotere, I only get Taxol and Herceptin
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Hi fluffqueen!
Good to hear from you. I recently had to switch MOs, too. (Long story.) I now have the youngest MO in the practice; she seems OK. She has me pegged to doing AIs for 10 years. The day-to-day side effects are bearable, but after two years, I have full-blown osteoporosis. Yay. I'm now on Fosamax.
It sounds like your day-to-day side effects are less bearable. If I were diagnosed at Stages I or II, I'm not sure I'd do an AI for 10 years.
Ugh, yes, about the working out! Thankfully, my kids are back to school as of today. I got on the exercise bike this morning for the first time in weeks.
Good luck with selling your house! Yes, house responsibilities can be so onerous.
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Cherry - My surgical oncologist at Johns Hopkins presented my ability to be treated with Taxol + Herceptin vs. Taxotere + Herceptin as something to celebrate, because it's associated with fewer side effects and is just as effective in early stage, node negative BC. Unfortunately, I can't take taxanes so I am dreading my appointment with the MO next week.
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Hi All,
Any of you notice blurry vision (like you want to rub your eyes)? I've noticed a drop in my eyes and am not sure if it's attributable to Femara (I think I've seen reference to ocular side effects) or Herceptin? I am going to get some eye drops today to see if that works. I'm noticing 'sores' in the corners of my mouth and my nose also goes through cycles of scabbing in the tip. Wondering if all this is related to dryness.
I had wondered if 10 years was the standard now for an AI...I had switched pretty quickly from Tamoxifen to Femara once my ovaries were out.
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On AI's and PRUNES:
For whatever it's worth, my oncologist said he will put me for life on an AI, probably Arimidex, once I get to that stage of treatment. Before that starts, however, I first must have surgery and then radiation. I just finished six TCHP treatments. I am 64.
Someone asked about the prune study. Basically, research has shown that eating 10 prunes a day has a dramatic effect on bone health. Ruthbru, a frequent poster on various message boards here, ate prunes daily after being prescribed Arimidex. Five years later, she posted that she had developed no osteoperosis while on Arimidex all that time.
Here is a link describing the prune study:
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I am wondering, in cases where there is no node involvement and tumor is not near chest wall, why is lumpectomy and radiation considered a "less aggressive" treatment than mastectomy without rads? They are both treatments, one is not "less" or "more" aggressive than the other. To me, losing my breast is "less" aggressive than radiating my body. Why don't doctors always explain both options? Why do doctors think they should make these choices for us? Why aren't we always given all the options and encouraged to make the choice that is best for us?
I work with a woman who had DCIS 9 years ago. The only treatment recommended for her was lx and rads, which she did. She continued to have areas of concern throughout the years and finally asked if she could have a double mx since she was tired of all the scares and biopsies. She recently had the mx, but is having trouble with reconstruction on the side that was radiated, and this is nine years later. She said that at the time she had the lx, she wasn't told that she could skip rads if she had the mx. She said the mx was no big deal to her and she definitely would have opted for that over the lx with rads, had she been given that option.
I have talked to many women who went the lx/rads route without being told that an mx might spare them from needing rads. I think both options should be thoroughly explained and it is the patients right to choose.
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PoseyGirl
I have noticed changes in my eyes, told me SE from taxol/herceptin. I started using eye drops morning and night (make sure they have no preservatives) also told me wait several months before having eye exam. I have lots of dryness in my nose also, using saline nasal spray and ayr gel at night. I just finished my taxol and start next week herceptin only, hoping the dryness gets better.
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Thanks, BJI...I was done chemo late October, but have still got 2 Herceptin treatments left. I noticed the eye blurring moreso over the past month.
I will try all the drops you mention - thanks!
Re: prunes...wow. That's a lot of prunes. If we buy the juice, I wonder how many cups that is? I don't mind drinking a glass a day...
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debiann,
You're right that BMX OR LX + rads are both valid options. For me, LX + rads was less "aggressive" because I did not want reconstruction and the multiple surgeries that often accompany it. I wanted to keep my breasts and their sensation, even though my right breast would be (and is) a little smaller than my left breast. I also wanted a shorter recovery time from surgery. For me, reducing surgeries and recovery time were important because I was 46, working full-time, and caring for two special-needs sons. Fortunately, rads didn't really do much to my skin, and it was a part of treatment that was easy to incorporate in my life.
In some cases, it is difficult to tell breast cancer patients that BMX will reduce the likelihood of rads because the doctors do surgery + SLND first. Let's say they do the surgery, and find positive nodes (even if they didn't show up on imaging). Then, the patient might be recommended radiation, even if he/she has had a BMX.
I guess it boils down to whether or not the doctors are sure that the patient is node-negative. In your friend's case, she had DCIS, so it would have been virtually impossible for her to have positive nodes (unless there was an invasive component that the doctors missed). For her, yes, her doctor could have assured her that if she had a BMX, radiation would not be recommended.
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You are right, Elaine Therese, there is always a chance a positive node could be found and rads would be recommended anyway, but there are many instances when it is almost certain an mx would mean no rads, and that, I don't think, is properly presented to many patients.
I've heard too many women say "my doctor said I didn't need an mx, that would be too aggressive". That's what I have an issue with, the doctor making the decision. Perhaps, if they knew their options some would prefer to skip rads, for whatever personal reasons. For women who have no desire to reconstruct, in my opinion, the mx is the LESS aggressive treatment over lx/rads.
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About those 10 prunes:
Some suggest gradually working your way up to that many, starting with 3 one day, 4 the next and so on.
I find I can eat 5 in the morning with my usual breakfast without suffering any untoward results. I plan to work my way up to 10, though, by eating the other five later in the day, probably with supper. I'll post a warning if that experiment fails!
(I must admit that I don't mind the taste of prunes.)
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HapB,
Its my understanding that survival is the same, but the odds of having a recurrence or new primary are less if you have removed the breast tissue.
But that's not what I am talking about. While you feel there is no need to remove body parts if it is not necessary, others may feel that there is no need to subject the body to radiation if avoiding rads is as simple a removing an unnecessary body part. Some are less attached to their breasts than others. Read some of the posts from women who have life long damage from radiation, its not always a walk in the park. My friend is having issues nine years later. She wishes her doctor would have explained at time of dx that she could have an mx and skip rads. She did not know that was an option.
All options should be presented to the patient to make the decision. I believe insurance will cover a bmx, or lx/rads. I'm sure radiation isn't cheap, I can't imagine there is much difference in cost, particularly if the patient does not reconstruct.
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Hi Ladies - I don't post that often but I was hoping to get your input. Six weeks ago, I finished six rounds of adjuvant TCHP. I'm scheduled to receive Herceptin for a year and my MO just called me and told me my insurance company approved continued infusions of Perjeta as well. I know this is not the norm and I'm wondering if anyone else has been offered this option. My MO said we would weigh the risk and benefits of Perjeta and if there are any issues, we can discontinue it. I'm not sure how to feel about this. On the one hand, I'm grateful my insurance company approved it because I want to throw everything at this cancer that I can, but I'm also apprehensive since it sounds like I may be a guinea pig. Thoughts?
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Thank you, HapB, I am reading a thread on this subject right now
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Just wanted to say "thank you" to all of you who have posted here! You've been a great source of information & inspiration as I've started on this journey!
I had my lumpectomy & SNB on Tuesday, and the three nodes they took appeared to be clear. I'll get final pathology on Wednesday when I meet with my surgeon again. I have not met with an oncologist yet; I imagine that will be the next step.
Congrats to CoachVicky & HelenWNZ!
SpecialK, thanks so much for sharing your knowledge & experiences! If anyone has been given a difficult but important gift in life, it is you with your ability to coordinate so much information & break it down for those of us who are less technical and/or new to cancer. You truly are special!
HapB, am I correct in saying your course of treatment has not included chemo? Is that under a trial or the choice of you & your care team based on your particulars?
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soxfan75- I am on 4/6 TCHP chemo. I will have surgery, then radiation then every 3 week Hercepton/Perjeta infisions. That's what I have been told. My husband was confused too by having both but that's what they said. I'm having a terrible time with diarrhea so they are changing my chemo levels for the T and Perjeta because they both cause this. This may change the Perjeta part later then we'll have to see.
I had a question about the radiation too, in that my Breast dr has told me that even if tne tumor has shrunk after chemo I'll be looking at a mastectomy and radiation. She said that radiation is required to sterilize the remaining breast tissue, even after a mastectomy. I will have 30 sessions after my surgery
I had a 4 cm, no nodes, nothing anywhere else on my CT scan. It all just seems like overkill to me
but I have to trust them -
Hmm, HapB, I believe that survival rates are statistically the same for both populations. But, yes, those of us who chose lumpectomy + rads are slightly more at risk for a recurrence because we have more breast tissue left.
For me, a local recurrence in and of itself is not a problem. It's mets that kill, not cancer localized in the breast. Of course, no one wants to go through surgery, etc., again. But, my #1 fear is mets.
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Regarding the question about local recurrence of lumpectomy vs. mastectomy, this from Johns Hopkins:
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Just a piece of information regarding the recurrence rate of lumpectomy/rads vs. mastectomy:
Johns Hopkins statement concerning the relative recurrence rate of lumpectomy/rads vs. mastectomy
From the JH website:
"Will having a double mastectomy lower my chances of recurrence?
Regardless of whether you choose to have a lumpectomy or mastectomy, the recurrence rate remains at approximately 10 percent in the treated breast and about 0.5 percent per year in the breast that has not been treated. The risk of getting a different cancer is about 2 percent."
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My MO believed that I had postpartum breast cancer (PPBC) which is an aggressive cancer in women under 45 years of age who develop breast cancer within 5 years of having a baby. My daughter was only 2 when I was diagnosed, and I had two consecutive miscarriages prior to delivering my daughter full term. I was basically pregnant off and on from October of 2010 to May of 2012. The doctors think that, followed by estrogen BC pills, fueled the fire.
There is a lot of research currently being done on PPBC.
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Back to symptoms of Taxol and Herceptin. When I did both, I had bloody, snotty nose, significant eye changes (which haven't corrected), and some constipation which I learned to anticipate and get ahead of before each infusion. Insomnia the night of chemo from the steroids. I lost a toe nail on each foot but I had gel fingernails that held up the whole time. The SE which caused me to quit after 8 treatments was very painful neuropathy in both hands and feet. I felt good with just Herceptin. Joint pain with the AI but it's better now that I took the suggestion to ask for Teva. (By the way, Hap, my Medicare and my supplement has fully paid for treatment but I know I have a VERY good supplement.) Still have 5 months of Herceptin to go.
For now, I'm comfortable with the decision to do AI's but know I have the option to stop. For now, I am trying to think of my BC as a chronic illness that needs attention. I take medication for blood pressure and cholesterol too. I did switch from taking it in the evening to morning because I wasn't sleeping as well as I had been. I know many of you are more careful of your diet than I am but I have increased my exercise routine. Those too are choices we can make.
I had brachytherapy within 10 days of surgery which I highly recommend if you are a candidate. I had some breakthrough of the radiated site when I started chemo but that has healed nicely.
Sadly, it seems to me, that even after we look at all the statistics, some of us will have recurrences and some won't. Each of us has 100% and zero % we just don't know which is which. And we each have to make decisions about quality of life and longevity. My mother died at age 96 of senile dementia after having had melanoma 30 years earlier. I know I don't want to die like she did.
Sorry if I'm rambling tonight.
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My BS said the survival rate was the same for MX or LX/rads, but the risk for local recurrence or a new cancer is greater with lx because, obviously, there is breast tissue remaining.
I had an lx first, but had close margins and was going to need an lx redo, then rads.I believe about 25% ??? of lx's need to be redone, sometimes more than once, because of the margins, so even with lx multiple surgeries are sometimes required. During chemo, while reading this forum, I learned that since I knew I was node negative and the tumor was not near my chest wall, I would not need rads if I did an mx. I repeat - I read about that here on this forum - my BS did not discuss this option with me - that's what I have an issue with.
My MO (an Egyptian man),said he could understand getting a uni mx, but why did I want a double. He asked, "What does your husband think of this", lol. I responded that my husband thinks they are my breasts and I can do what I want with them.
My cardiologist was slightly concerned that the rads were going to be close to my heart, but didn't say I shouldn't do them. I felt Herceptin was going to be hard enough on my heart, so I was happy to skip rads.
But that's my personal decision, I'm not saying someone else shouldn't do rads. I'm saying doctors should explain the options better. My doctor - many doctors - never explain that with an mx there is a potential to skip rads.
Hap, I understand that lx with rads is the standard of care, so that's why doctors don't bother to explain there are other options, but why is it the standard of care? That is my point. Who has decided that saving a breast is that important? Someone like my MO who wanted to know about how my husband felt about my breast? Patients should decide what is important to them, doctors should just be giving all the facts.
My breasts were old and saggy, I didn't love them. They were not worth saving, especially if it meant I had to be radiated to keep them. Chemo was enough poison for me. I would have liked to have skipped that too.
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Tresjoli,
I have wondered about the role pregnancies had for me too. I was 47 when diagnosed. I had my daughter at 40, but was pregnant and miscarried three times between 42 and 44. My GP put me on birth control pills at 45 because my periods were all over the place. I believe all this mayhem hormonally, combined with other factors such as extremely dense breasts, created that perfect storm. I had always hoped that my lengthy breastfeeding timeframes would protect me to a degree (5 years of breastfeeding in total between 2 children and perhaps it did for some time, but I just don't know.
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I'm in the northeast and I do think the doctors lean toward lx with rads. Again, there's the problem, I don't think they should "lean", just present the options. Someone, somewhere may have a very good reason to want the alternative, and they should be able to make an informed decision.
When I read on BCO that for someone in my situation, no node involvement, an mx would mean I would not need rads, I went to my BS and said "Am I understanding this correctly, for me, doing an lx with rads is not to save my life, its to save my breast. I can have the same outcome by having an mx and I don't need to have any rads." She said yes, that was the case. I was sold. I told my husband, "I'm not doing rads just to save these saggy old boobs."
I think it was wrong for your doctors to tell you that an mx had no benefit for you. How do they know what benefits you? There is more to this decision than just ultimate survival statistics. Some women choose mx simply because they need to travel a long distance for rads and they don't have daily transportation. I suspect that's the reason for more mx's in the midwest. There could be many reasons one would prefer to skip rads, but if you aren't told that's an option, how can you make the best decision for you? Having breasts is not everyone's top priority.
My rant today on this subject started because of a co-worker who was not properly informed of options nine years ago when dx with dcis. She was told the treatment was lx with rads, neglecting to say she could do mx without rads. After nine years of mammo callbacks for questionable issues and biopsies, she asked to have a double mx, but the reconstruction is now compromised on the side which she had rads and may not take. She said that if she would have been told nine years ago that she could have have an mx with recon and no rads, that would have been the way she would have went. She should have been given all her options. I almost had an lx redo with rads because I wasn't given my options. I thought I needed rads with either the mx or lx. These can't be the only two examples of doctors not providing enough information for the patient to make an informed decision that benefits them, not someone else's ideal of what benefits them.
Again, not to discredit anyone who chooses to do rads to be able to save their natural breasts, its a fine choice if that's what you want to do. I'm only complaining about not being told that for some, there is an alternative approach.
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Tresjolie, Posey, I was uncomfortable to discuss it first because for some reason I felt that I couldn't, mostly because we kept it a secret my husband and I but now when you mentioned it I have also been wondering If three of my last pregnancies have caused the bc. We have been trying to conceive another child for two years and then 2,5 years ago I got pregnant but it went wrong, a few months later another pregnancy that ended early and 6 months later one more time. So, same here three unsuccessful pregnancies between 42 and 44. My last pregnancy ended 15 months ago. After that I have been depressed for months and we were really struggling with our marriage, I went to therapy and finally decided that we have to go on with our lives and several months later I was diagnosed when things really just got better. Only twice I took ovulation pills, one of the se was cancer but my gynecologist said that the risk was not big since I only took them twice. I have also been taking large doses of folate supplement. No fertility treatment, no birth control pills, no bc in the family. Now I blame myself for that, I was pushing for another child while my husband was content with those two we already had and I was so sad that he did not want it as much as I did. Now I regret it, no baby anyway and now this bc. So, I am with you on this one, can't stop thinking about what if I could have let it go, Cherry
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Debiann, I have been following your discussion and I just wanted to say that bmx even If it removes the brest tissue it does not remove all mammary glands because they still may be there above the brest, sometimes as high up as clavicle and also under the arm. My tumor was on the same level as my armpit, they missed in on mammogram four months before I felt it myself and the tech had hard time to get it between the plates later, she needed a special plastic device that could hold it in place. I was not even sure it was bc, I started to search the web on bc tumor location and this is how I found this site. I started a thread and some people replied, all of them having bc outside the brest, or I mean what we usually consider the breasts. I mentioned it to the doctors that when you get the information on how you have to do your monthly exams it never says that you have to check up to theclavicle. I discovered my in the shower and it felt flat from the beginning and then swelled after the biopsy. How much tissue do they remove when they do bmx? I doubt they remove it all but of course the major part. I was told that my option was lumpectomy and rads, I live in Europe, everything is centralised where I live I cannot opt for mastectomy. Cherry
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debiann,
I wonder if doctors are sometimes afraid of overpromising. Every now and then, I come across a post on this board from someone who expected she could skip rads if she had a BMX. Then, her surgical pathology report reveals nodal involvement or cancer closer to her chest wall, and her doctors advise radiation. "But I thought I could skip rads with a BMX!"
Now, these posts are pretty rare. I've come across this situation maybe 2 -- 3 times. I think doctors should say that women can choose LX + rads or BMX without rads provided that there is no nodal involvement or cancer close to the chest wall. By the way, my surgeon didn't even discuss surgical options with me once the tumor board recommended neoadjuvant chemo for five months. He handed me a big packet of information about surgery and reconstruction, gave me a referral to my MO, and said, "See you in five months." (He was a charmer.)
Cherry,
Thank you for reminding us that not everyone has the same choices as we do in the United States. In the US, we love having choices and researching our options. I hope you get excellent treatment and rest secure in the knowledge that your health care is publicly provided -- not the case for everyone in the US.
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