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No tests scheduled after chemo is finished.
Hi,
I finished all my treatment and was told by my oncologist that they do not do Cat. Pet or Brain scans until some symptoms appear. I told him that is ridiculous. How am I suppose to know if this last year was worth it. Has anyone else been told this? Thanks, Mary Jo |
Re: No tests scheduled after chemo is finished.
I was told the same thing and find it equally ridiculous!
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Re: No tests scheduled after chemo is finished.
Yes, I was told this to and am just appalled. I am so tired of hearing "statistically..." and "...there is problems with putting that kind of radiation into your body..." (when asking about a PET Scan)
First, I am NOT a statistic. I am Leah. I love the outdoors, hiking and my kayak. I have a little girl who deserves to watch her mommy grow old. I may have been diagnosed with BC but I am not a F&*^%$@ statistic. Second...please don't tell me that you are worried about how much radiation you put into my body after you have pumped me full of chemo and I laid on a rads table 34 times for a total of 78 zaps. Pul-leazzzeee....the peace of mind I could gain from a negative PET scan far outways any risk involved...that is, of course, my opinion but I do feel strongly about it. That being said...I did have a CT scan of my brain (clear, but I would have preferred an MRI) due to (chemo induced?) blurry vision that has since cleared. And I did have a CT scan of my lungs (ordered by PCP, read by rads onc and now being followed by rad onc) due to shortness of breath. They saw something funky in there and will rescan in June...hoping its just my 40 year old bronchitis prone lungs and nothing else... However...when Herecptin is over in July I will DEMAND a PET scan. I know my insurance will cover it, I already checked with them. If med onc refuses I will either switch med oncs (most likely scenario) or lie about symptoms. I am in control here...not the oncs. I recongnize myself...even if they only see a patient... ...and....I'm off my soap box...for now... This crap just burns me up. Leah |
Re: No tests scheduled after chemo is finished.
I had a scan after chemo. Have you considered one of the vaccine trials?
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Re: No tests scheduled after chemo is finished.
I called my Dr. today and he agreed to a brain scan and a pet scan. I will continue to ask for them every 3-6 mo. like you I will make up symptoms. This whole lack of procedures makes me feel like I am a lost cause, why bother she doesn't have a very good survival rate.
This whole process is insane. I need peace of mind and I am going to get it one way or another. Leah I feel your frustration and aggravation with the whole system. |
Re: No tests scheduled after chemo is finished.
'Lizbeth if there was ANY trial near me i would do it.
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Re: No tests scheduled after chemo is finished.
Every 3-6 months is really a lot for someone who is not stage 4. It is one thing if you are having symptoms, but I am stage 4 and I only have scans every 6 months.
I do think it is reasonable to have one at the end of treatment and yearly, if your ins will cover it. Laurie |
Re: No tests scheduled after chemo is finished.
I think this is very usual and my onc will only order a scan if I symptoms or pain that has lasted more than two weeks or so.
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Re: No tests scheduled after chemo is finished.
Hi, I know I don't respond often but..... I just had my first 3 month check up after herceptin, and my oncologist ordered blood workups and C27/29 test. She infered she can tell if anything is going on by looking at the liver numbers combined with other results. Mine were fine.... but maybe I should ask for a PET scan??
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Re: No tests scheduled after chemo is finished.
I asked my onc if she would order a pet scan after chemo was finished and she said no. I asked when - she said 6 months after chemo.
It is ridiculous to "wait" until symptoms appear. Dumbest thing I've ever heard |
Re: No tests scheduled after chemo is finished.
Any of these imaging studies a good fit for one of you?
http://clinicaltrials.gov/ct2/result...=Open&no_unk=Y |
Re: No tests scheduled after chemo is finished.
I hear every one of you Ladies!! Nodding.
In '95 -- 4th stage, mastec, 2 out of 21 nodes involved, you can read my signature for details. In '96 after tx I was told, That's it. I asked, When do I have my next CT? No CT. Standard of care. Seriously??????????? I did get my full blood workup ev 3 mnths. I saved ea report. (I had to ask for copies.) I compared ea to the last. I made up symptoms in between. Guilty. Don't tell anyone... In '98 onc said, Everything's fine. Good, I replied. Just -- very slight, very very slight elevation in liver enzymes. I wouldn't worry. 3 mnths later same deal. I asked then, What could be causing that? Always consistently normal. Could be anything. The statins you take. Don't worry about it. 3 mnths later -- deja vous. AND I SAID, WELL I AM WORRIED AND I THINK I SHOULD HAVE A LIVER SONOGRAM. Okay, so it's an abdominal sono. Onc said he could justify that (for the insurance company). Sono radiologist said he couldn't be sure what he was looking at. He apologized but had to send me for a CT. Waiting for CT results, my onc finally called and said there were some "abnormal" cells and I should come in w/my husband that afternoon. Paul left work early and picked me up. Doc was shaken. Knew me since '95. Bottom line -- WHAT YOU HAVE IS INOPERABLE, INCURABLE AND YOU WILL BE ON LONG TERM CHEMOTHERAPY, FOR THE REST OF YOUR LIFE. There were multiple tumors throughout my liver. Too many to count. My CA 27.29 was normal. And continued to be normal for mnths after. The blood tests give you a window into what's going on. Be alert!! The slightest change -- you respond!!! That's my best advice. Please read my WHY I TAKE SUPPLEMENTS thread and my WHEN THE MIND SPEAKS, THE BODY LISTENS thread. I love you all, my Sisters. You are people. Not statistics. Don't let anyone forget that. Andi P.S. FYI -- In '99 after 9 mnths of Taxotere, I moved from ev 8 wk CTs (chest/abdomen/pelvis) to ev 3 mnths. For yrs... Then I begged for ev 4 mnths, cause that drink gave me so much urgent bathroom drama I couldn't take it. Ok, said onc, but absolutely no longer than that. I remained at that for yrs and yrs. I stayed on Herceptin for 10 years!!!!!!!!!! Been off Vit H for nearly 5 yrs. STABLE. I was finally moved to CTs ev 6 mnths. And last yr -- to annual... !!!!!!!!!!!!!!! |
Re: No tests scheduled after chemo is finished.
there are a lot of women who have stayed on herceptin for years as well as myself. My insurance company decided to nix the pet/ct scans for more often than yearly, and have to fight to get Mri's covered. Their Definition on CNS tumors must come from the Kindergarten anatomy book. I too am a Nurse, but over all these years has open to suggestions I have made, mostly from recommendations from members on this board.!!
Darita |
Re: No tests scheduled after chemo is finished.
Everything they said...be really proactive. I asked for a brain scan and PET scan a few months after chemo was over, and was told the same thing your doctor told you. A couple months later I had headaches and ended up with five brain tumors. I have three tumors left, and my doctor is now telling me he wants to wait until they grow to cyberknife them. Im saying, oh heck no. Im not going to wait until one of them grows and there are gosh knows how many more are starting to crop up. Hang in there and be assertive...! Many prayers and blessings to you.
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Re: No tests scheduled after chemo is finished.
This discussion is so full of emotion that I hesitate to enter the fray. But it seems like someone should make a few points.
The main thing is that IF breast cancer recurs (metastasizes), there is no such thing as "catching it early". We have this early detection thing so drummed into us that it's hard to shift our thinking. But many studies have shown that women who have their recurrence detected by scans or markers (before symptoms) do no better than women whose recurrence is picked up when they report symptoms. That is why treatment guidelines in the US and elsewhere recommend only regular MD visits and history and physicals for follow up after primary breast cancer. There are some qualifications to that rule and I'll mention them below. Some people read the above and "hear" that there's nothing that can be done about metastasis so why try. That's not at all what the research says. There are MANY things that can be done with great success, especially for HER2+ cancer, but those things work equally well whether the recurrence is found before symptoms herald it, or not. Once cancer has metastasized, most women enter the queue of being in treatment for the long haul. The only difference between those who pick up a recurrence via scans or labs, and those who report a symptom that is investigated and found to be a recurrence -- is that the first group lives with the knowledge of the recurrence a little longer (typically, a few month's difference). They do not live longer, overall. So the caveats here are at least two, imho. First, each person must be fairly vigilant for said symptoms and not deny or ignore them. A good rule of thumb is that anything severe or anything lasting longer than 2 weeks should be worked up to rule out a cancer recurrence. NOT worked up as a garden-variety complaint (like, for example, doing conservative treatments for back pain to see if it works, before ruling out cancer recurrence). The second caveat is specific to HER2+ cancer, again just imho. It's about CNS and/or brain mets. Since after Herceptin treatment, brain mets are a little more common, it makes sense to me to do some kind of imaging to watch for this -- as in this case, the earlier the brain mets are found, the more options for radiotherapy there are (this is, again, unlike the situation in the rest of the body where the tumor, pretty much regardless of size, either responds or does not, to the systemic therapy, so size is less of a concern). The issue here, and it's a big one, is that no one has any idea how often it would be best to image the brain in order to make a difference. I don't think there are any official recommendations about this but most oncs are aware of the higher risk of CNS recurrence and should be open to some kind of follow-up. Back to that "responds-or-not" bit -- we can see the proof of this by reading the signatures of so many women on this list who are living with metastatic breast cancer. You'll see those who had big recurrences in vital organs yet had complete responses and have remained NED for LONG periods of time (perhaps forever). You'll see those who had small recurrences that responded poorly to treatment after treatment, perhaps moving fairly slowly but still relentlessly advancing. And all kinds of in-between. In the body (below the neck) it seems to be much more about biology and response to treatment than it is about size or bulk of cancer. I think that's mostly about the difference between treatment with radiation (size-limited) and systemic treatments. IF we figure out how to effectively get across the blood brain barrier with systemic treatments, this distinction may disappear. We know that HER2+ cancer tends to be fast-growing. So especially for HER2+ cancers, a clear scan (of brain or body) today carries absolutely no warranty. Which brings us to the next reason women want scans and intense follow-up. For reassurance. Of COURSE women want reassurance, it's very scary to be diagnosed with cancer and then to finish the grueling treatment and learn that no one knows if it worked or not -- that's a lot to adjust to. But the fact is that no one can tell us whether cancer will recur or not. It's a huge uncertainty to learn to live with, and we each find our own way to do that. Doing lots of tests to "reassure" ourselves every few months is probably not the best way to smooth our way. Mainly because that approach will not save nor lengthen our life. But also because that approach puts us on a roller coaster of heightened anxiety, especially around the time of the scans/labs -- doing the test, waiting for the results, etc -- and all to no benefit. And lastly, the thing people don't really like to hear but we DO need to consider -- is that it's costly, very costly -- to do the kind of follow-up some are advocating. In our country we spend SO much money on healthcare and yet we have some of the worst health outcomes, when compared to other developed nations. Our technology has far outstripped our ability to pay for it. We (the big societal "we") must do the hard work of deciding what will give us the biggest bang for our limited bucks, when it comes to health care. Doing scans that cost thousands of dollars, just to reassure someone (but not lengthen their life nor relieve suffering) is just not a very big bang. And in theory, it takes resources away from those who very much need relief of suffering or lengthening of life. Again, I hesitate to send this because I know (from previous discussions, smile) that rather than calming and soothing the emotion in this thread, it may stir things up even more. But I am pretty sure that the strength of this list is in its honoring of both heart and knowledge, so I feel there should be some balance offered. That's all I'm trying to do -- offer some balance. And I'm tough-skinned, you can yell at me if you need to and it will be okay. I know it's hard, especially that time as treatment ends. Love, Debbie Laxague |
Re: No tests scheduled after chemo is finished.
Debbie, I for one am not upset you entered the fray. Quite the contrary actually as I have spent the last few hours re-reading what you have written and giving it some thought.
I realize that mets is mets is mets, no matter when you catch it, but I do believe sooner is better. If I didn’t have a forward thinking, proactive gyno I would probably still not know I had cancer. If my gyno hadn’t ordered a mammo yearly for the past three years (starting when I was 37) with u/s every six months just in case I turned into one of the one in ten thousand people whose fibroadenoma’s turned into cancer where would I be now? Yes, I feel lucky that my cancer was detected early. Lucky lucky me. So I can’t help but think that finding one small area of mets would be better than finding a large area of mets. But that’s just my opinion. Personally, I would like that one PET scan and brain MRI post treatment, and of course I want them to be clear. I feel that reassurance will go a long way in my overall anxiety level. But I just want the one. I know having tests or bloodwork could open a can of worms I would rather keep closed. My recent CT scan of my lungs proves that to me. “We aren’t sure what we see, don’t think it’s mets, let’s wait 3 months and look again”. Umm…ok….meanwhile…and I dying?? And you are right…as my treatment comes to an end my anxiety level rises. Has this worked? Will I live to see my daughter graduate HS? College? Get married? Be a grandma? I know we don’t have guarantees in this life but dammit…I want one. So here is a truth…my herceptin ends in July…and yeah…I want a PET scan and an MRI of my brain…but I want to wait till the fall to have them done. Why? Because last summer sucked and I would like to not repeat it. I would like to enjoy this summer, thank you very much. And hopefully my follow up lung CT in June will allow me to do that. I know we can never really know what is going to happen next, I know this better now than ever. Debbie, I thank you for taking the time to respond and explain things in a way my med onc can’t seem to do. What you said makes sense and gives me much to think about Best Leah |
Re: No tests scheduled after chemo is finished.
'Lizbeth I am not eligible for any of those studies but I thank you for the link.
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Re: No tests scheduled after chemo is finished.
Maybe this is a stupid question but I need to ask. I was also told no scans unless symptomatic and only have a blood draw but what symptoms are we supposed to be looking for. Pain, what? Some days I just feel off, is this a symptom? After all the crap they put in us I don't know what normal feels like anymore. I feel pretty good but if I
have an off day I freak out. Before I was dx'd I kept telling my doctors that I just did not feel right, they would take blood,everything would be fine and blew it off as just getting older then I got cancer and they said I probably had it for years so that is why I most likely felt crappy for so long so if I feel slightly off am I having symptoms? I asked what symptoms I was supposed to be looking for and she said lumps, cough, pain. I hate scans and all the waiting for the news but piece of mind would help us all enjoy life a little better. Every morning I have slight panic attacks wondering if this could be the day. I try to live my life as if I never had cancer but everyday I hear of someone getting newly dx'd, I see someone with no hair in the grocery store,etc. it's impossible to just move on without concern. Pain where? We have aches and pain everyday and I know if it persists for several weeks its a concern but pain can come and go forever, is this a symptom? i had headaches before when I get them now is it a symptom? I really do not know what I am supposed to be watching for. Call me stupid but it is just not clear to me. |
Re: No tests scheduled after chemo is finished.
Good question, checkmark! In a very general way, I think that vague rule of anything that bothers you for 2 weeks, especially if it's getting worse not better, is not a bad rule. That doesn't mean that it's a cancer symptom, just that it should be checked out to be sure it's not. I'd bet most all of us on this list have had something checked out, especially in those first years, that turned out not to be cancer.
And of course anything really bad, that you'd go to the doctor for anyway, especially pain. Things that come and go, and have always come and gone, are probably just things that come and go. In that category, I'd say the worrisome things are new things -- changes to your new normal. But of course, you don't even KNOW for sure what your new normal is, so these first years will be troublesome. I wish we could fix it all for you (and all of us) so nothing was troublesome, but so far, it just doesn't work that way. Everyone learns different things that help them to manage the anxiety of all this. Some just keep putting one foot in front of the other and find that over time, it all settles down. Other do spiritual work, or physical exercise, or find opportunities to give back -- and find that helps calm them. I did various things that helped me but I think the best thing was simply to remind myself that my fears could be there and I could still live with appreciation for life. I told myself that yes, it was possible my life would be shorter than I'd previously thought -- that I could die of breast cancer. So, I'd say to myself: "if I have less time than I want in this life, do I want to waste even one moment of it fretting about that, or do I want to live each moment to its fullest?". The answer was usually that I didn't want to waste a moment to anxiety. It's not like I could control the outcome by fretting about it. Sometimes (12 years later) I actually kind of miss that sense of urgency to grab my (perhaps limited) moments. Here are a few sites that seem reasonable, in their listings of symptoms to report to your doctor. http://www.mayoclinic.com/health/rec...CTION=symptoms http://www.webmd.com/breast-cancer/t...rrent-symptoms As that last site notes, if you think about the places breast cancer is most likely to recur to (bone, lung, liver, brain), you can figure out what MIGHT be concerning. It's not like it's crystal clear, and it's not crucial that you run in immediately in most cases. Local things like new lumps, of course. Bone mets would usually cause bone pain. Lung mets would interfere with breathing, making you short of breath and/or causing a cough. Liver mets could affect appetite and digestion, cause pain, or make your urine look dark or your skin yellow (jaundice). Brain mets could cause a headache or any kind of neurological symptom like numbness, dizziness or balance issues, trouble speaking, seizures, etc. Feeling "off" is probably not a symptom. It's probably your body still recovering from treatment itself. Be gentle with yourself. We've all wondered exactly what you're wondering, and been sure every symptom was a recurrence. For some, it was a recurrence. For most, it was not. No one can tell you what lies ahead for you, from a cancer standpoint. You will find the way to move forward in your life, putting the uncertainty into its niche and living reasonably comfortably with that uncertainty. But it takes time, and probably some exploration and work -- to find the best way to make that work, for YOU. Talking it out, as you're doing on this list, can help. You will get there, but in fits and starts, not in one giant "it's all over" leap (alas). Debbie Laxague |
Re: No tests scheduled after chemo is finished.
Debbie, you have provided an important service here. I have heard this explanation more than once at various seminars and it has finally sunk in. I understand the logic. I happen to have had various scans during my first 5 years in Cancerland because I had symptoms. Once a brain scan for a pressure that was persistent. In that case a big scare came with the finding of multiple abnormal areas. This required a neurologist who determined that the films had been grossly over read and the changes were normal aging. And I think most of you know what happened when everyone overreacted to my chronic cough resulting in unnecessary lung surgery and a misdiagnosis of cancer. This is one aspect of testing without good cause. Often it results in false positives and goose chases. Things get found that are not things! If I am making sense
After my 5 years of routine follow up and AIs, I was declared "cured" ( a word I am not very comfortable with!) without any scans. Because I had no recurrence. I don't know if I explained myself well enough but wanted to try contributing to the conversation Keep the faith everyone |
Re: No tests scheduled after chemo is finished.
Debbie is right.
I thought the way you did after my treatment but the more I've learned, the more I realized I was wrong. First, those tests don't find metastatic cancer until it is about symptomatic anyway. They find it by the cm, not the cell. Right after treatment, you likely don't have findable cancer, but if you do (I did) it will be found. And second, once you have found it, your life is not any longer than when you didn't find it. Just unhappier. You start treatment that never ends until the day you die. And, evidence shows that finding it before it is symptomatic does not give you any bit of a longer life. Like Debbie said, we are so used to early detection we think it applies to mets too...but it doesn't. A few months or a year until your symptoms show make zero difference in your lifespan. Catching mets early doesn't mean you live longer. It means you are in treatment longer. So, Mary Jo, you will worried for a while. Very worried for a year probably, then relax a bit, then after 3 years you will start to realize you may have beaten it, after five years even more confidence....but it'll always be in the back of your mind. That's the price you'll pay. Don't make it a higher price than it has to be. I think the trick for you will be not worrying about every little ache and pain and remembering that cancer patients can have simple pains too. Try to put yourself in the mindset of a survivor: you HAD cancer, (not have), stop reading cancer blogs and forums, stop talking about it, stop living it. It will take some time to do that but you just have to reassure yourself that you did what could be done, you have the best doctors and most people manage to put it behind them. Was what you did worth it, you ask? Make it be. Imagine what being a survivor will look like to you, and try and make that happen. Think of it as a renewed chance to start your life. You had a horrible scare, a terrible year and now it's over. The after affects will linger on but they too, will dissipate and how quickly is up to you. We can control our minds and our reactions. Five years from now this will be a terrible memory. 10 years from now it'll be part of the flow of life. In 20 years, you'll be too happy to think of it. And if the worst happens? You'll find it. Mets doesn't keep itself a secret. Let me tell you that I had decided to do all those things before I was finished with treatment. I had a very popular blog that I was going to shut off, I was not going to talk cancer anymore, was going to turn my back to it. I had dates set to do different things. I was determined not to live my life as a cancer patient/survivor whatever. I was going to put it behind me. And, sadly, I am in the minority that got mets, and quickly too. But I have to tell you that those four months after treatment ended and before I found my mets were wonderful. I had hopes and dreams and a future. I didn't have to go to the doctor every week! I didn't have to take tons of medicine, feel pain and sickness, watch the sad eyes of my child as he sees me decline. I got to think I might see marriages and grandchildren and grow old with my husband, watch him golf, watch my wrinkled skin get tan. Don't take that away from yourself before you have to. |
Re: No tests scheduled after chemo is finished.
Please add my support to everyone who has recently finished chemo and or other treatments and now wonders why there are no scans. I have not taken the time to read all of the carefully written posts. I will share that I have been lucky not to have experienced any recurrences. My oncologist, who I really trust, does not recommend scans unless I alert him to something unusual that we both feel needs to be checked out. I get a through exam and blood work every 4 months. I just now am switching to once ever 6 months. My doctor says there are too many "false positives." This is where a scan shows "something." Often that something is really nothing and there is anxiety and maybe some invasive surgery. All this being said, I was quite nervous for about the first 1-3 years after finishing treatment. I have been NED for almost 7 years and have not had one scan since the end of my Herceptin. Great that you are asking questions and making sure you get the best treatment and follow up available. I just did not want you to think that your doctors were being derelict (sp) by not providing scans. Just my opinion and my experience. Wishing everyone well!
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Re: No tests scheduled after chemo is finished.
Thank you to all the women who have come before us, both NED and fighting the battle. You teach us and help us DAILY.
I do worry for many reasons, some of them because of being here and gaining an understanding of being HER2+. If it wasn't here, it would be somewhere else, because I have access to pubmed because of the my field of work. I know I come here when I'm super tired, and because I like knowing why I feel crappy. Why my nose is bleeding all the time, etc. I have to be told to go home, told to leave work because over 25% are visibly sick and they can't afford me to be sick. I truly don't like to see myself as a cancer patient. I want to go for a long run, cook an amazing meal, drink WAY too much, hike at sunset, etc. I'm not a sit on my butt person. So it's hard to digest the responses of those I truly respect when they say that when I'm done with all this crap, wait until there is something really bad. Just not my nature. I can't imagine it was yours either, but here you are, tell it like it is. I hope that I don't have symptoms and I'm done for a long time. Unless they come up with another screening technique, I'm pretty satisfied with being happy and moving on as long as I can. Thank you. |
Re: No tests scheduled after chemo is finished.
Cool Breeze, that is one of the most profound things I have ever read on this board. Thank you so very much for sharing it You are amazing
Keep the faith |
Re: No tests scheduled after chemo is finished.
CB - your post gave me chills. Thank you for putting yourself out "there" for all of us.
Janis |
Re: No tests scheduled after chemo is finished.
After finishing my year of herceptin as stage 3C, my oncologist agreed to give me a PET for my peace of mind - she was convinced I had nothing to worry about. Imagine her shock when a 9cm turned up in my liver. Glad I had the scan!
- Penny |
Re: No tests scheduled after chemo is finished.
Ann, once again you amaze me with your honesty and your eloquence in expressing it. I think we should frame that post and present to everyone upon completion of adjuvant chemo.
And whoohoo on your signature line -- I had missed that excellent news elsewhere about 50% shrinkage. I hope that the Gemzar is gentler to you this time while doing its job on the cancer. Thanks to Catherine, Bonnie, and others who have brought in the problem of false positive results leading to even more anxiety and perhaps invasive (unnecessary) tests or even surgeries -- I forgot to include that. Debbie |
Re: No tests scheduled after chemo is finished.
Coolbreeze, hit the nail on the head. Thank you for posting that - it helped me as well. "Don't make it more than it has to be" :) Best.
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Re: No tests scheduled after chemo is finished.
Thank u Debbie and Coolbreeze for the wonder words of wisdom. I was actually doing well until recently when I hit a gray wall. My friends daughter was dx'd with Her2 breast cancer, she is 35 and has a 14 month old and a 4 yr old. As my friend keeps me updated it has been alot of been there done that and reliving my experience again. My heart is broken, it's as if she is my daughter so as I try to encourage them and be strong I am also going back to the beginning of my journey as well and I think that is why I am having some fear again.
I do not want to post to much about her yet I want to make sure she is ok with it. Stupid cancer but your words put me back on track and I will deal with that matter when and if it happens. Coolbreeze, just an amazing post, thank you. Keep my friends daughter in your prayers please,she has an extremely large tumor that was blown off by her ob gyn a year ago. U all know where I am going with this. |
Re: No tests scheduled after chemo is finished.
Hi,
I did have a brain and Pet scan both came back normal. It gave a sense of comfort knowing I was ok. Of course no one knows why a stage 1 will metastasize or why a stage 3 never goes any further. It's a crap shoot, luck of the draw, but Hope should never be taken away. I barely remember the person I was BC (before cancer) but stats can always change. My personal position will remain the same. Pet and brain scans 6 mo. I need to know what is going on..playing with a blind fold is not my idea of playing fair. |
Re: No tests scheduled after chemo is finished.
Dear MSmnuf,
Do you live in the States? I never heard of not being monitored after bc. It's important to find the RIGHT oncologist someone who will listen to you and your concerns. Can you switch to another doctor? How would this doctor feel if it was her/his mom, wife, sister? He won't be telling them that, you can bet on it! Take care. Fight for your rights, you should be heard! Adriana |
Re: No tests scheduled after chemo is finished.
hi all, my first post. i'm 45 andwas dx'd with stage 4 her2+ jan `12. liver and bone mets along with 2 small brain mets.
5 months carboplatin taxol herceptin xgeva then 6 small brain mets end carboplatin taxol, keep herceptin add tykerb xeloda...clean for 4 mo feb '13 5 new brain mets different spots from the old ones so 15 rounds WBR. still on herceptin and tykerb. got rid of the xeloda, clean again. that all said, i get scanned every 3-4 months, brain MRI, body PET and echo. insurance denies it, oncologist intervenes and so far they pay. scans are good....... robin |
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