WHY would I put myself through this?
Comments
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Most people here have very good intentions.
Aside from the issues involved in which choices to make about treatment, does anyone have any definite and helpful practical solutions to the questions about how to pay for all the spendy stuff?
Is she going to feel better as time goes by if she spends her way through this and she would rather be sure her family has those resources to live with instead?
I don't think we can make those kinds of choices for other people. Especially if we happen to not have to worry about making that kind of choice ourselves. And especially when no one can say for sure which treatment always works for which person.
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Nancedawg, have you contacted your insurance company directly to find out what you need to do to make sure that tests, procedures and other treatments are covered? Some insurance companies require a referral or pre-certification for each treatment. Some insurance companies require that you use a specific laboratory for pathology. You need to make sure you are aware of the specific steps your insurance requires in order to cover things, and remind your caregivers, doctors, hospitals, clinics, medical office staff every time if you need something specific in order to be covered.
I have also run into doctors' offices billing the wrong insurance company, or the wrong branch of the insurance company (the offices handling their HMO may not even have a list of the clients who have the company's PPO plan), so of course the insurer refused to pay.
If you still aren't getting satisfaction, contacting the source through which you get your insurance (employer, or association, or other group), and if you still aren't getting what you need, contact your state's attorney general and find out what your rights are, and if there is a specific state office that handles insurance regulations.
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Possible assistance with insurance issues - contact the Patient Advocate Foundation:
http://www.patientadvocate.org/
They will give you a Case Manager to help with figuring out insurance issues, appeals, etc. and will also help you to apply for grants, assistance with copays, etc.
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Here it is...Dominant outer right breast mass with associated regional enhancement that extneds from the nipple to tip of axillary tail (measuring greater than 10 cm) Dominant 2.8 cm invasive carcinoma. Metastatic involvement of right axillary lymph nodes by breast cancer. Nuclear grade 2-3 with microcalcifications. Strong intensity staining Allred score 8 for ER receptor positive. Weak intnsity stain for PR positive Allred score 3.
HER2neu Positve 3+ Uniform intense membrane staining with a homogeneous dark circumferential pattern involving greater than 30% of invasive tumor cells is present. There is no STAGE number listed on all of this, and I haven't been given a number, but from my research and this report I have figured out it is stage 3 give or take. It is interesting that $3000 of pathology reports doesn't even pinpoint a stage.
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It may be little comfort, but my path report, both after bmx and several months later after bone biopsy, did not state a stage. This was discussed in person with my oncologist who went over the path reports line by line and in plain English.
Caryn -
Nance - that is rather large and with 2 positive nodes (so far) you would be in serious trouble if you don't have surgery and follow up treatment. HER2 is VERY agressive. Any tumour over 5mm is usually treated with chemo/herceptin even with negative nodes. I know it's scary, but if you can arrange the treatment under your insurance it would be well worth it. I'm over 2 years out from treatment for an 11mm HER2 tumour (clear nodes) and I can really say I have no lasting SE's.
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Your comment:
"Is there nowhere that you can read about someone who doesn't get the treatment, or we all just like cattle led to slaughter."
My response:
In developed countries at least, most are like cattle, terrified, dealing with such sudden and complicated news and information. Some react, and are more dependent and blindly trusting of medical providers than others are, wanting magical answers to be "right" for them at all costs. Professional opinions are very sophisticated and medical providers are aware of it and do count on that. They can seem extreme in their recommendations.
You don't sound at all stupid to me.
Find out what your financial picture and options actually are. None of this is going to be an easy ride, no matter what your decision is.
Some providers will authorize the use of trastuzumab alone, but with the exception of clinical trials where neoadjuvant (before surgery) treatment with trastuzumab alone is being done, as far as I know the only others receiving it without chemo are early stage patients who refuse to do the chemo and are not on the fence with their oncs about that.... in which case some oncs then feel it would not be ethical to deny them trastuzumab. Up until recently, trials had never been done to be able to tell whether trastuzumab alone worked well enough for at least some patients (in conjunction with an intact immune system to support body defenses, in comparison to the reduction in the immune system with the use of chemo).
Yes, I think that failure to conduct any trial for that is quite unscientific, illogical, and inhumane, myself. It is their idea of "medical ethics", and my idea of "CYA and cop out", and since very few of them ever have to actually personally DO the treatment or pay for it, it is fairly open to interpretation.
Recently at least one clinical trial using trastuzumab alone was started for those who are 70 or older, but it is still in progress so there aren't definite answers yet from it.
I should also add that, because medical providers (who don't usually undergo treatment themselves for bc) have only put the stamp of approval on use of trastuzumab WITH chemo, sometimes insurance will not cover the use of trastuzumab alone.
Does any of that help to explain where things stand?
A.A.
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My oncologist strongly suggested chemo with the Herceptin, but like AA said, when I said no chemo, especially for early stage cancer as I thought it was way over the top for preventive measures, thought with my recurrence history best to at least give me Herceptin. I think she now feels with my present heart issues it' was good I didn't include chemo in the mix.
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Eve - you didn't have positive nodes - I doubt any doctor would recommend no chemo for someone in this situation.
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I agree with Susie, there is a huge difference in diagnosis.
Nancydawg-Lady Grey's pathology was even less than the rest of us. Both she and dance rancher had very teeny tumors and any treatment was a little controversial depending on who you talk to.
You are in a much different situation. I can tell you that even with my pathology, it was very doable and I was not puking all the time. Never in fact. Had minor queasiness off and on. It somewhat depends on your chemo protocol. With your diagnosis, I am not sure just herceptin would do the trick. -
Oh, and I do not regret the treatment one bit. I am working on looking forward now.
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I agree fluffqueen01~
and I really like your tagline...
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I agree nance has a more serious dx than I. I was just saying that if someone refuses chemo with herceptin that the doctor will at least encourage the herceptin because the her2+++ is an aggressive cancer. It is up to nance- to what she does.
Although my cancer was early stage 1a, the cancer recurred 3X's. The cancer was found growing right under the first lumpectomy scar. There is some question to it's size due to 2 dx's...the biopsy took out the bulk of the tumor 2 C ... it left 1.8 C that was removed at surgery which gave me the dx of stage 1a. My doctors were concerned because in just a few years I had 3 dx of bc in the same area and as to why they suggested a more aggressive treatment. I would had chosen herceptin only even if positive nodes were found. After just taking herceptin, I' learned that if I had herceptin with chemo my heart would had a major hit. For me, I'm glad I listened to my gut to do herceptin only.
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Eve, you were asking about heart drugs, so I'm going to post this even though I cannot verify the information, just so you can check into it for yourself, and so that anyone else can at least try to confirm it for themselves. I'm somewhat familiar with this drug but I personally don't have insight about it in regard to HER2+ in particular from any cardiologist, so you would need to verify it.
This was posted at the other website for HER2's by a very experienced HER2+ patient:
"Also, cardiologists have found that prescribing Coreg(carvedilol) a beta blocker, BEFORE and during the administration of cardio toxic drugs such as Herceptin, Pertuzamab, Anthracyclines etc, can protect the heart from ever being damaged from these drugs. They are attempting to spread the word to oncologists to initiate this regimen on patients who will be at risk."
A.A.
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AA, that's interesting because that is the drug my oncology cardiologist put me on to try to control my misbehaving blood pressure. (It isn't working).
nancedawg, comparing your diagnosis with mine is misleading. You are in a FAR more serious situation. Reading between your lines, I think you are as worried about cost as you are the rest of it -- understandably so. I hope you will investigate ways to at least have the surgery and herceptin.
As for your question, I can't say I regret it or don't. I did the TCH to give my kids a level of comfort and I would do it again for that reason. Like many things we do for our kids, the fall out is unclear.
But.....I'm tired of feeling tired and wondering about everything. I had my [# who knows?] herceptin infusion yesterday and today I had to travel. I couldn't see the road signs coming into Denver, and I couldn't read the signs at the San Diego airport -- "Ground Transportation" was a blur until I was right under it.
Quick consult with Dr. Google and I found that vision problems are a side effect of herceptin. Well, OK.
But what about the rest? The fatigue that WON'T go away, the insomnia that WON'T go away, the complete lack of appetite, the COMPLETE loss of libido, the diarrhea that keeps me home for a few hours EVERY morning, the raised dots on my legs, the aching port, etc.
I feel too foolish to raise any of that with the onc as I know I won't be taken seriously. All they care about is the EF fraction, and mine is good. Herceptin has no side effects as you know.
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TheLadyGrey~
I think it is sad that you would "feel too foolish to raise any of that with the onc."
A good rapport with my doctor was very important to me.
I am sorry if you do not have that.
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TheLadyGrey...curious what blood pressure med did your cardio onc put you on? Reason I ask is beta blockers are very well known to cause many of the side effects you listed, esp loss of libido, and fatigue. Vision issues are many time caused by bp issues and heart issues. I do feel that I am definitely having issues with Herceptin as well, including lack of focus, aching all over, and generally lethargic. However, maybe its just some form of post tramatic stress issue from all I have been through over the last year. Good luck.
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Graylady...I haven't been on heart med's yet, and I have all the Herceptin symptoms you mentioned. The idea that heart med's has the same type of side effects as Herceptin. My oncologist wants me to take heart meds in hopes I will continue Herceptin. I can't imagine the side effects of Herceptin and heart meds.
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I would get the surgery if I knew that would handle it for a while. I do, however, believe the surgery opens up a huge can of worms which is why they do the chemicals after. I believe once they cut into the cancer it goes haywire. So, unless I decide to subject myself to the drugs, I won't have the surgery. That would be foolish to put my family and me through that. They want you to do the chemicals for years...years... I just don't think that is the way I want to live. I would love to read about someone who didn't get treatment, but there is nothing out there to read. I know, I know, it's because they are all dead. Anyway, it would be nice to have someone say, on the one hand this is what will happen to you, and on the other hand this is what will happen to you. That would help me make a decision, but there isn't that kind of information out there.
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Nance - even having clear lymph nodes (in my case) doesn't mean it won't spread - it can spread through the blood. You say you have positive lymph nodes, so it has already spread and there are probably lots of microscopic cancer cells already floating around inside you. Having surgery won't make that situation worse. They don't necessarily cut right into the cancer, they would obviously cut around it to get clear margins. Chemo and herceptin doesn't take years and years - the chemo part is around 18 weeks (for TCH) and the herceptin part 17 or 18 treatments over one year. When I was diagnosed, I read a study about a woman who had a 1cm HER2+ve cancer with clear nodes and she was stage IV. After reading that, I knew I had to do everything I could to try and prevent that. Not having surgery would be life threatening for you. Don't have any other treatment if you don't want to, but please at least have the surgery.
Sue
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They only do chemo for "years and years" if you become metastatic. Chemo after surgery at your current stage (I assume your scans were clear since you said you are stage III, not stage IV) is to prevent you from getting to that point.
At this point, without treatment, you are choosing to allow the disease to become metastatic. It is just a matter of time.
The financial aspects can be worked out with programs as I mentioned earlier.
The choice is obviously yours. Just make sure you are fully educated about the choice you are making.
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ccjj -- I take carvedilol and Losartan for high blood pressure. I had pregnancy induced hypertension with all three babies and it never went down after the third -- so this has nothing to do with the cancer treatment.
I have no idea if either of those is a beta blocker -- no one ever mentioned possible side effects to me (naturally).
Nance -- I really hope you will thoroughly investigate all of the options. I strongly encourage you to go through with the surgery and chemo. Lymph node involvement and HER2+ do not a good prognosis make.
Going to brutal here: dying of cancer is a cruel way to go -- it isn't like you are going to drop dead one day and spare your family the agony of watching you die by inches. My step mother in law died of BC -- I watched months and months of her deterioration and the infighting in the family over her care which has left brother not speaking to sister. Chemo and surgery are a walk in the park compared to what I saw.
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At this point I am considering the surgery only. As I said before I worry that I will just make things worse. Lady Grey, did your step mother in law get treatment or nothing? The surgery decision is a no brainer if my lymph nodes weren't positive. May do surgery and radiation. As of now, I am saying no to Chemo and Herceptin. I have researched everything there is to research about this. The problem is most of the research is run by the drug companies so you really don't get an accurate assessment. Still pondering, but definitely pushing the surgery forward a week so I can go on a trip with my daughter before life as I know it is over.
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As, somewhere on the trial website, there are some studies testing beta blockers to protect the heart against chemo drugs. I went on one for mildly raised bp, and the doc chose a beta blocker because of that study. He said my dosage (the lowest) proably isn't enough to have an effect, but it can't hurt.
Nancydawg...lady grey is right, dying from cancer is not pretty. I watched my dad die from duodenal cancer and I can relive it pretty easily. -
nance, you remind me of me.
Every single thing I have done I have done kicking and screaming.
I repeatedly, permanently and vocally decided each step of the way that I was NOT going to do X.
Then I got the best advice here -- just show up.
The morning of my first chemo, you would NOT want to be in my death ray zone. My husband finally said, rightly, "you are so angry they are not going to be able to do it. You need to decide whether this is what you want."
OK, F.I.N.E. -- I drove around and settled a bit but was sobbing when we got to the infusion center. For me, in that moment, it was the death of hope -- hope that I was somehow special and should get a bye on this since there was no reason for me to have BC -- not like those OTHER BC patients who must have done SOMETHING to get it or had some gene thing going on.
It was surreal -- still is.
You don't have to eat this elephant in one sitting. Do the first thing. Do the surgery. Then decide what if anything you may consider doing next. They don't start chemo until several weeks after surgery so you will have time to decide.
Everything about this is so startling -- "huh? ME? Hang on a sec -- this isn't my deal. I'm the one with bad back."
Take it in stages -- the fact that you do one thing doesn't necessarily mean you will do the next thing, but you may find the next thing is more palatable after you have done the first thing.
In my experience, surgery was a big nothing -- no real pain (I was all over getting pain meds on time), I had been doing the exercises for weeks before (do that) -- was home in less than 24 hours after surgery, up the next day, driving the next. Driving depends on being off pain meds and having good range of motion in your affected arm.
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nance...I agree about the surgery. That is a sure thing. With surgery alone I was told for me (early stage) that my risk for recurrence is only 25%. If I were stage 2 (probably was) my recurrence risk would be about 50+ % with surgery alone. For someone like you the risk maybe higher for a recurrence. You are the one who has to live with the risk factor. You maybe fortunate never to have a recurrence. Hopefully so. So far, I've had 3 recurrences in the right breast, which is why it finally had to go. I was told initially the odds were I wouldn't have a recurrence...you just don't know.
As you know I did go with the Herceptin, and I happened to be the 12% to have horrible side effects. Obviously with chemo, I would have been in worse shape. If I had to decide between Herceptin & chemo, I again would do Herceptin.
One of several reasons I chose not to chemo is because no one could explain to me the whole dynamics of taking both at the same time. Rationally, the Herceptin is supposely flagging your immune system to destroy the cancer cell. If your immune system is destroyed by chemo, then you have no immune systerm, killer cells, to go after the Her2+++ cancer cells. It seems completely counter productive. I even asked this question to my oncologist...no answer. Second, chemo doesn't kill cancer stem cells. It can shrink a tumor for a time, but that's it...as I understand. And sometimes for some unknown reason even a stage IV cancer can disappear.
I hoped the Herceptin for me along with surgery would do the trick. I hope the several Herceptin treatments I had was enough.
And like graylady said...take one step at a time. Take your time and be fully convinced that what you are doing is right for you. I believe in individualize treatment. We aren't all the same, and what might work for one person might not work for another.
(((hugs)))
No matter what you chose...it's a gamble.
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I do agree no matter what you do, it's a gamble. I had BMX in Feb. of this year. I have HER2+ - I had no problem with the decision for the BMX, but the chemo, was not comfortable with and Herceptin and the AI's all would compromise my heart which I have had issues with. I am an senior...I did not want to damage my heart...I am taking a gamble but from speaking to a woman in England, who also is HER2+, they do not give Herceptin if you percentage range is on the low side, HER2+ which mine is and another friend of hers, the same thing, no Herceptin prescribed. They are cancer free for over eight years without Herceptin and chemo. I am now taking DIM to balance the estrogen dominance - mine was 97% estrogen - 0 progesterone - I am only hoping and praying I am doing what is right for me, but again, you have to go with your gut...ultimately it is your decision to make - I am going with diet, and supplements, I am going to an alternative M.D. for help with the supplements and holistic treatment...I can only pray I do not have a recurrence, but who knows....we are all scared after a cancer dx...how can you not be scared....(((hugs)))
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I also lost 33 lbs since my surgery so I am eating well...needed this weight loss which will help with the estrogen dominance as belly fat is where the estrogen grows and God knows I had enough of that...hopefully all of this will help stop a recurrence but as my alt. M.D. said, cancer can come back 30 years later but if I could get 20 years before a recurrence, I would be happy...no one knows what is going to happen...that is why you have to live each day to the fullest and try not to worry about a recurrence as worry and stress is not good...I hope you find peace with whatever decision you make.
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I had my last Herceptin about 10 weeks ago. I went through the full year although I never fully understood whether it was the time frame or the number of infusions that drove the train.
My LVF improved over the course of treatment. I had three (????) echos.
Good news: I’m starting to feel normal. I’m nowhere near where I was fitness wise, but I’ve decided to let myself up – I may never be where I was fitness wise.
The last four Herceptin infusions were increasing difficult. The fatigue was – well, you know what the fatigue is like.
It felt like I had too much blood for several days after each infusion. I’m curious as to whether that description resonates with anyone else.
I had the major yucky nose sores for 6 to 8 weeks. They actually got grosser and yuckier before they finally went away. I have had an apparently antibiotic proof sinus infection since then, but it is better than the sores/yuckiness.
My nails have started growing more normally – i.e. growing at all. My toe nails have a discernable ridge in the same place which I suspect corresponds to one of the treatments, although I don’t know which.
My hair has also started growing more, but still slowly. I have chemo curls around the edges (I used the Cold Caps) which I actually love.
My leg hair never really came back (YEA!). My pubic and underarm hair are thin but present (BOO!)
My eyebrows are back to normal. My eyelashes still fall out routinely, all at the same time in each eye so right now, my left eye has normal lashes and my right eye has stubs. You have to learn to laugh.
I am on Prestiq (100 mg) to deal with hot flashes and depression. I think it is working very well.
I am not bothered by Tamoxifin. I have little/no sex drive but who knows what that is about.
I haven’t gained any weight.
I’m meant to see my oncologist this month, but I don’t see the point since all they do is blood work, so I’m not going.
I had a radical shift in thinking late last summer: I let myself up. I have always been a worker bee, trying to stay a step ahead of everyone else’s needs. I just couldn’t – and everyone survived! Imagine that.
When tired, rest. When hungry, eat. When fatigued, take a walk. The trick is in distinguishing between tired and fatigued. If I haven’t exercised that day, I am fatigued, not tired.
I KNOW, I KNOW – it is SO hard to get yourself to exercise when you feel like lead, but do it anyway. I’ve found books on tape to be hugely helpful – I only allow myself to listen when I am exercising. A few days ago, I had to quit at “the jury was back with a verdict.” That will get you out there the next day!
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LadyGrey! So nice to hear an update. I cant believe it has been a year. My recovery lifestyle is very similar. Fingernails are finally growing better, but they still break very easily and before they get long. I don't do manicures much because the shellac ones are still too hard on the nail for removal, and the regular ones don't last 24 hours on the edges so seems a waste of money.
For so e reason, I still have a light runny nose off and on that comes out of nowhere. Makes me wonder if the sinuses are messed up, but I don't have symptoms.
I was on Pristiq but it didn't do a whole lot, so I went to Effexor which is the cheaper version. It helps a little but I still have them badly. If you decide to quit, wean yourself very, very gradually. It isn't pleasant.
I have also always been one who tries to take care of (translate that to control) everyones, as I felt they just couldnt possibly make decisions quite as well. No longer. I can wear the "Just Say No" pin with no regret.
None of my body hair is like it was. Leg hair comes in but fine and thin. Eyebrows are ok, but they grow funny...kind of straight up. I do have light peach fuzz on my face. Now, maybe I had it before, but didn't realize it, however NOW, I hate it. So I have it removed for the smooth feel and look.
Just talked to my ob/gyn today at my annual exam about the low drive. He prescribed a compounding cream that I found on this site. I'm hoping it spices things up a little.
So glad that your life is returning to normal. For me, that is the hardest. I constantly feel like I am juggling that other shoe, hoping it doesn't fall.
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