TRIPLE POSITIVE GROUP
Comments
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Thanks for the info special k. I will talk to np on Wednesday when I go for Herceptin and see what she says. What do you mean about your age would make you qualify fo Ssdi? I am stage 3 and 48.
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ah2bthin 1 more thing. Initially I wanted to do a double but like I said my BS didn't recommend removing healthy tissue BUT he did say he would support what ever I wanted to do. It was only after the MRI came back with 4 spots (one that he was really concerned about) that he recommended removing both because that one spot would have to be biopsied every year. I didn't even bother with the biopsy. Didn't know it was LCIS till I got my path report from the BMX.0
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kay1963 - apparently social security believes that if you are 53 or older (I will be 55 next month), unable to perform your current job due to physical or mental demands, or physical or mental incapacity, you are TOO OLD to be retrained into a new job! I was astounded to hear this! I returned to work for a couple of weeks, then had to leave again for more surgery. I ended up resigning because I was looking at an average of 3 appts. a week for the forseeable future and I knew my boss couldn't hold my job forever. The ADA leave was dependent on no negative impact for company/co-workers. My job was involving direct patient care, so no room for errors of any kind, and I was still impacted by chemo and more surgery - didn't want to take the risk with patient safety. This job is also not amenable to leaving in the middle of the day for appts. - I was the only one that did that particular job - so it would have been a pain for my co-workers. It was easier to just resign - but I did not file for SSDI because I thought it was ridiculous. I am fully capable of returning to work, or being retrained into a new job, I just need to get through this period of treatment first.
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Hey lago - Congratulations on your last herceptin Tuesday!!0
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omaz - how was your port-outing?
lago - yay on the last H!
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specialK - It was so much easier than installation! My surgeon does it in the OR so I went through the regular checkin stuff. Then I had the versed (I think that's how it's spelled) and sedation so I was asleep while he took it out then I was awake while he was fixing everything up. I could feel him working but I was all relaxed. I think it took about 25 minutes. I woke in the OR and shifted myself to the gurney. I asked to see the port and was surprised by how thick it was, thicker than I thought, and how long the tubing was. He put in some long acting numb-stuff that really worked. Worse part was taking off the big plastic adhesive wrap which made the skin underneath all red. I put on some hydrocortisone cream and that helped. Now at a little over a week it is healing up good. My neck and shoulder are sore but I don't think that's related to the surgery, I think that was me just doing too much.0
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Windlass,
I can't speak to your case. Only your Dr and you can make those decisions. However, the most recent study out is causing Drs all over this area to change their standard of care. For instance, 1-3 positive lymphs didn't always gets rads...now it appears as if the standard of care will be to offer rads even with MX for those women.
As Lago indicated, the study was done on early stage BC up to 2 inches or 5 cm big....and this was the conclusion:
"There is good evidence that removal of additional affected lymph nodes does not improve survival in cases of early breast cancer following a lumpectomy, chemotherapy and whole-breast irradiation for tumors less than 2 inches (5 centimeters) in size, and where the cancer has spread to just a few lymph nodes in the armpit. In such cases, chemotherapy and radiation treatment after the lumpectomy have proved to be equally effective. This avoids the serious side effects, including chronic swelling of the arm (lymphedema), that often occur after lymph node removal."
That's not ME saying it, that's the results of the study. You and your Dr can only make the best decisions for you based on the information available. And I hardly think 12 qualifies as "a few." So it makes sense they recommend removal in that case.
But things are changing, and in another year the new women on this board may be getting much different recommendations (based on newest studies) than we had.....my cousin is certainly having a dialog about the axilla now, whereas last year when I was diagnosed, there was no discussion except the one I made....and I had to fight to keep my axilla.
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TonLee - Is it the same for recurrence as well as for survival, do you know?0
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SpecialK my insurance company also encouraged me to apply for ssdi, the reason being is if you get approved the insurance co pays you less or none at all...so saves them money. I did not apply either as I am going back to work eventually. Also for SSDI you have to prove you will be out of work for a year or more and then the process to get it takes over a year WHEW too much!! I also heard that we are not retrainable over 50..hmmmm I am 53 and feel like I still have the ability to learn....ha ha at the colleges they call us "adult learners"
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Thanks again for the info specialk. I am somewhat similar in that I am the controller of a small co. and am the only one employed there that can handle all aspects of my job. Right now they are using a CPA who did our taxes for us at $200 an hour. Way more than anything I was making, but not doing the number of hours I was. Other people at the co. are filling in too and I am still helping out as well. My concern is it is a high stress job and I really don't want to hurt my health. It used to be much less stress, but was recently purchased by a larger co. and then I had a whole new set of people wanting info and wanting it NOW. Then they purchased another co. about 5 hour drive away and wanted me to handle their financial reporting as well. Their financial guy left for another job. Now since I've been out, the co. that purchased us was purchased by another co. Not sure how that will impact me. I was excited about some of the changes and new opportunities, but now am more concerned about my health and not wanting extra stress. But I really need the money. Not sure what to do long term, but I don't want to take advantage of my co. or hurt my health. Such tough decisions and don't really even know what my options are. But thanks for your info, it is helpful.
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Omaz,
The way I read study (Z0011) is that survival is the primary endpoint and disease free survival second.
http://jama.ama-assn.org/content/305/6/569.full
For the radiation over dissection study Patients treated with either strategy had a recurrence risk of about 1%. Radiation therapy and surgical dissection led to similar overall, disease-free, and distant disease-free survival.
Here is a really good, lay-man, article on it. It's a year old and published before the actual study was published (which addresses the "we must study this.." section of the piece.
http://www.medpagetoday.com/MeetingCoverage/ESMO/22750
One more thing. ha. Even BCO is updating their information on axilla dissection.
http://www.breastcancer.org/treatment/surgery/new_research/20100608b.jsp
Personally, I'm just glad axilla dissection is open to discussion now, no matter what is decided. It was a sacred cow at my facility ("We've ALWAYS done it...") until just recently.
Hope that helps
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LAGO.....WOW!! Are you saying that if you just had a uni that lobular calcs would have been left behind? Did you thank your lucky stars, if so?!?
Chemo might have mopped up everything...but still, wow! Awesome you caught it!0 -
No geewhiz. Once I did the MRI my BS recommended the BMX over the MX. It was LCIS (Lobular carcinoma in situ) with pagetoid spread into ducts, 1mm. I did have microcalcifications but I always had those. I'm pretty sure it would have been removed but there were other spots (that ended up just being cysts).
I didn't question the "need yearly biopsy" because I knew it was best to off with both their heads. When you have small breasts with dense tissue and the tumor has to grow to 6.5cm (including non invasive part) with bloody discharge from nipple for them to find it I didn't want to wait for it to happen again. The next time the outcome might not be so good. I'm planning on chemo being a 1 shot deal.
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Hi ladies and Happy Labor Day.
Amazing how quickly treatments change. Glad I'm finished except for Herceptin and the 5 years of Arimidex which I need to mail off and get started on. Dreading it as much as the chemo and radiation which are behind me now. Fortunately, the rads were easy to deal with.
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Hi Arlene-
Arimidex for me has not been near as bad as chemo. I didn't have rads (had BMX and TE- then had my implants done in July). The first two weeks had some nausea- mild but it did go away. I take my pill in the late afternoon- around night meal time.
Have had some joint pain- but NOTHING like the taxotere pains were so far. Stiffness in the morning- but it goes away for me after moving around. My ER was 99 percent positive, so I am going to be one that wants to stay on Arimidex as long as I can.
Here's hoping it goes well for you.
Lisa
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Goodness, so many things have been talked about that I want to add my 2 cents to...
My BS wanted a MRI before my MX, since he wanted to do the MX w/Axillary Dissection in 4 days after my 1st appt he was able to get me in for the MRI, he also liked the MRI so that he knew better what he was dealing with before he cut. My rt breast was clear. He fully expected that all of my lymph nodes on the cancer side were involved, so there was no question about the node removal, turned out that 5 of 18 were cancerous and that bumped me in to the radiation with MX category.
Port removal - my BS is super cautious, and he felt after my last Herceptin that the port removal was appropriate, he told me should I need one again it would be no problem. But I believe he would have left it if I had axillary dissection on both sides like lago . They never used my port for blood draws and I had two surgeries while I was undergoing cancer treatment and they didn't use it then either, one was stent placement in my tear ducts, where they used my rt arm for the IV, then I had bilateral carpal tunnel surgery, they put the IV in my foot for that one, that was actually a much easier IV then the one in my arm!!!
Disability - kay1963 & SpecialK I'm I worked for a company that carried both short term & long term disability on the employess, for the 1st 6 months STD paid 2/3 of my wage, and I was able to use PTO to cover the balance, after 6 months it switched to LTD, which continues to page 2/3 of my wages. I think that the approval that kay1963 was given was the initial approval, then if you are still off work, they will extend the disability, at least that's how it worked, and is still working for me, they reassess every three months to see if I'm still unable to work. The LTD company required me to apply for SSDI, I've been denied twice, now I'm on the 3rd try, this phase is before a judge and takes about 9 months to complete. I will have been on full time disability for a year this month. My previous SSDI denials felt that I was still disabled, but would not be for a more than a year, and that I would be able to earn at least $900 per month by that time. However, that isn't the case. I also read somewhere that once you have gotten SSDI should you feel you are able to work again that you can try for up to 9 months, and if you find out that you are unable to do so then you can go back on the SSDI without reapplying. ArleneA
kay1963 - I too was in a very high stress job accounting job, with lots of opportunity, and I had planned on going back part-time the first of this year, however they laide me off, then offered me back my job (nutty right?), I told them no, because at that point I knew I couldn't handle the stress and hours required, I'm so glad that I didn't go back. I think that life is to precious to get caught up in that type of job again. I believe that should I lose my disability and have to go back to work, there is something better out there for me, that would be a lot less stressful. I'm 55 and totally retrainable, that's ridiculous that anyone would say that people that age aren't!!!!
Herceptin only was the easy part of this whole deal, and I'm very glad that I kept my port for it.
Port removal was done in the office under a local, BS says 1/2 his patients do it in the office and 1/2 in the surgery, he lets you decide. It wasn't too bad, it stayed sore for a while because mine had really become part of my body and he had to do quite a bit of digging. I was very glad that I chose the office, though I did take an ativan before I went.
TonLee - thanks for the great links.
ArleneA - most people have little to no problems with the tamox or AI's, so don't worry too much in advance.
Goodness, didn't mean to write a novel! Thanks for all of the amazing information that I've gotten from all of you.
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Thanks TonLee and others for all the valuable information. It seems that lymph removal is a moving target as far as the research goes. In some ways we are still in the dark ages with this disease.
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Arlene the first 3 months of Anastrozole (generic Arimidex) I had no, zero SE. exactly 3 months later my fingers and toes got stiff in the morning but get better as the day goes on. I do have stiffness in the legs too. Basically if I am in one position for too long it takes me about a minute to change. In the morning when I first get up I walk like a 80 year old but by the time I reach the bathroom I'm fine… and I live in a small place so I'm not going very far to reach the bathroom.
I expected the worst but from what I have read most women experience some minor SE like stiffness. We just hear about the horrible SE… and for those women experiencing them it's rough. Most of us don't have it that bad at all.
Linda my last surgery they preferred to use my foot for IV rather than my port. When I got the colonscopy this spring the nurse wasn't allowed to access my foot but was allowed to access the port so I got the IV there. Myi port isn't a power port so when I have a follow up liver scan in February they won't be able to use it. I had to fight to get them to use my foot.
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Linda, thanks for that info on your disability plan. I actually was approved for the maximum 13 weeks for shirt term disability. That only paid $500 per week. Now I was approved for long term disability. I believe that started august 15. They told me the long term was approved until I finished treatment, but would have to be reevaluated after two years if I was still in treatment then. I sure hope I'm done when I finish Herceptin, which will be well before two years. Maybe I should just call the agent from the insurance co. in charge of my case and see what she says about the Herceptin. Did you stay on disability when you had Herceptin only? They didn't require me to apply for Ssdi. Thanks so much for the good info everyone.
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LindaKR - My surgeon only removes the port in the hospital - I didn't have a choice. I would have picked the office if I had a choice!0
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lago - at both the procedures they were uncomfortable using the port, as none of them had done it, and since I still had more herceptin to go, they were didn't want anything to mess up the port. With the one in my foot, the anesthesiologist had to set the IV as none of them had ever done it before, they were prepared to use the port if necessary (one of them had used one once, and the cancer center was on standby to supply them with the necessary items should they need them). I'm glad none of them tried, it made me a little nervous. My onc nurse said that they would have done blood draws through it if my onc had said that no peripheral veins could be used. No my friend that had her treatments at a different place had all of her blood draws through the port, I think it was because the oncology nurses did the blood draws. Crazy - so many differences of opinion.
kay1963 - I'm still on disability, and I had my last herceptin in May. I've got a lot of pain issues still, some are left over from the chemo (neuropathy), some from the radition (post mastectomy pain issues, adhesions, LE, shoulder pain) and some from the AI. I also, haven't recovered my energy, so get fatigued really easily. I thought I handled the treatments really well, by the residual side effects have been a real bear for me. I'm trying to have reasonable goals and expectations, and am doing a pain program to help me with the residual SE's.
Omaz - I almost chose the surgery way, but he didn't have any openings for like a month and a half there, whereas I could get in to the office for it within a week. I am glad I did it in the office, but I'm also really glad that I took the ativan
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kay1963 - I would be very surprised if your LTD did not require a doc's certification that you are unable to work, periodically throughout the time period. The benefit may be two years long, but that doesn't mean they will pay it to you for two years no questions asked. I was not approached by the company's advocate to apply for SSDI (to reduce their outlay, which is offset by what SSDI pays) until a couple of months went by and they had a chance to review my approval.
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My BS knows I need laser surgery on my spine so I'm going to ask him if it will be OK to take a 2-3 month break between 4th & final Taxol and beginning Herceptin. Since it is laser and local anethesia it is minimally invasive. Has anybody else needed time off in between their treatments?
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Ok gals- once again I am coming to these boards for advice and info. I have only one more TCH to go and then I will have a 6 week washout before beginnng tykerb. I will have my TE exchange surgery done Oct. 20th. During my last visit with MO, I mentioned that I would also have my tubes tied at the same time as the TE exchange. She then told me that if I was going to have reproductive surgery, she would suggest a hysterectomy and oopherectomy. Here is why: 1) I have a uterine fibroid which she states most likely will cause heavy bleeding later on and would need a hysterectomy anyway. 2) If you are having a hysterectomy they might as well remove ovaries while they are in there. They aren't going to be functioning anyway and might as well remove them to reduce cancer risk.
This was a bit unexpected for me. I thought that this would only be recomended if I was BRCA positive, but I am BRCA neg. I am concerned about the long term effects of having no ovaries. I am only 39. I am concerned of bone loss and heart disease and sexual health. Is sex dramatically affected by a hysterectomy?
What is the recovery like for this surgery? Does anyone know if they can remove ovaries and uterus laproscopically? Or must they make an abdominal incision?
Thanks for every one's help
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christean - I had a TAH/BSO at 45 (abdominal incision - my choice, don't remember why I did it that way now) and had trouble with flashes, but that was really about it on the SE. You can have a completely laproscopic procedure, but the ooph would have small incisions and the hyst part can be lap-vaginal. I had the TAH for numerous uterine fibroids (I looked pregnant and had a continuous mentstrual cycle) and they recommended removing the ovaries at the same time for the reasons you stated above. I had long had trouble with ovarian cysts, pain on ovulation, etc. so I agreed. Post-op path revealed a 3cm pre-malignant mass in the right ovary that had not shown up on imaging 6 months earlier. It was either missed or grew to that size in the meantime. The recovery for me was like a c-section, but I had a abdominal incision. I think lap would be easier. I don't know if there is a hyst/ooph thread in the surgery heading, you might check there.
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Christean - I just had a hysterectomy (including ovaries) a week and a half ago. It was done with the Davinci robot and I have 5 little incisions on my abdomen. I was on tamoxifen and it was causing multiple ovarian cysts on my ovaries and elevated estradiol levels. I am ER+(100%) and my MO was concerned that the tamoxifen was not was not best treatment for me due to the elevated estradiol levels and wanted me to shut down my ovaires with Zoladex or have them surgically removed. After several opinions, I decided in the hysterectomy.
I am 34 and there are risks of going into menopause at an early age (bones, heart) and I probably would not have done it if the tamoxifen was working and my ovaries were not going crazy, but for me the benefits outweighed the risks. This was by far the most difficult decision that I had to make regarding the treatment for my breast cancer.0 -
Christean I would get a 2nd opinion on getting your ovaries out. I know my friend who just had her 2nd lumpectomy in 2 years (no chemo both times) is peri-menopause. They have her doing the luprin shots to suppress her ovaries so she can take Anastrozole (generic Arimidex). Seriously reason #2 is bullshit. They do still produce a little. I mean that logic why don't they take out your appendix too while they're there.0
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Dear sisters,
Dxed in 2009 I was said I'm Stage IIA, according too NCCN BreastQuidelines 2011, I'm Stage IIIA because of high number of nodes.
Greetings
Usha
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Lago- I have an appt. with the GYN on 9/22. It will be good to get another opinion. I am really unsure of what decision I will make. Apparently Lupron causes an initial surge in estrogen which then tells the ovaries to shut down. (Biofeedback). My MO says lupron isn't the best option for me because of the estrogen surge every time you get an injection...especially as a long term solution. I have very mixed emotions about all this. First- the thought of this huge surgery really discourages me. Second- I am really scared about menopause, and Third- Do they really have to take ALL of my lady parts? I have lost my hair and my boobs, now my uterus and ovaries too? I'm not sure I'll ever feel like "me"again, and that is something I really want. I want to be myself again. I do not need an identity crisis along with everything else.
I want to make the right decision for my health and for my future, but this is really a tough one for me.
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Just a quick side note...I have noticed my hair has really grown the last week or so. It is probably 3/4" long, very sparse, quite fuzzy, and it stands STRAIGHT UP! I look ridiculously funny. I seriously look like I stuck my finger in a light socket or something. I have gotten over being self concious about being bald...and only wear a hat maybe 1/2 the time now. But, I am now self concious because I look so silly with it standing on end. I feel like a bald fuzzy baby bald eagle or something. Even I can't look at myself without laughing...it is ridiculous.
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