My choice--refusing treatment
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Diane, yes, I got over whatever made me sick, and I am hoping that is what affected my tumor markers. How are you doing? We are having a beautiful summer day in May! 27C and flowers are starting to bloom, and we have so much to look forward to.
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Diagnosed with DCIS grade 0 - got lumpectomy beginning of june 2018 after feeling like I didn't want to even do that but succumbed to pressure to do something from my kids - I am refusing to take hormone drugs - I am 68 years old - kids pushing for me to at least get 16 day radiation treatment. I just think now that I had that lumpectomy done and they found no cancer in any surrounding tissue - that cells could have dislodged already - my mind is racing. Going to radiologist today to start treatment - but still not feeling good about it.
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Radiation was not that bad for me. I had a lumpectomy too. My BC was Stage 1b, grade 1. I had 33 treatments. I had slight burning and fatigue halfway through. I know lots of women who have suffered with radiation treatments but I was blessed.I also took Tamoxifen for 5 years. I’m 7 years out next month.
I never considered not doing radiation. To each her own but I didn’t want to take any chances. If it comes back I’ll know I’ve done all I can do to prevent it from happening.
Good luck!
Diane
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littlelad, I wish you all the best in your decision making. I DID take 16 chemo radiation treatments; so far, I am considered clear, and won't know until the end of August how my tumor markers are doing. MO insists that I should do chemo if there is a recurrence, but I will have to let mu heart decide if and when it happens; at this point, I would still say no. I will be 65 this year and my husband is 74, and he is actually the reason I did radiation, not because he wanted me to, but because I did. If I was alone, I would have decided against. Go with you heart. I guess that is easy for me to say, because I don't have kids. It is very much an individual choice.
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encouragement, thank you so much for posting the interview with Dr. Ruth Parker Patterson and the information on mycircadianclock.org. I'm new and just trying to understand the acronyms being used. I am her2 triplepositive which seems to be a bit rare among the posters of this group. I believe/ for the best in using the “standard" treatments but my 14 yr old daughter died from chemo ( rhabdosarcoma cancer) I can't imagine going through it much less for six months on the assumption, but that's what everybody should get.
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OMG Deborah I’m so sorry. I don’t blame you for rethinking the standard treatment.
Diane
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Dear Deborah,
I am so glad you are writing, and deeply sorry to hear of your loss of your dear child. And now you find yourself here with triple positive breast cancer. I am so sorry. I am thinking of you with much love and care. Are you seeking treatment directly in Madera County? The reason I ask is that if you have the option of going toward UCSF for an opinion it may be helpful. I used our regional research university as my second opinion throughout treatment and they guided my decisions greatly. Had I had the option to use Herceptin and Perjeta without traditional chemos I would have. Some people in Europe have been able to get Herceptin and Perjecta alone without Taxols or carboplatins. Here the thinking is to give them with chemo as that is standard of care, they go hand in glove. But chemo only increases our survival by a very slim margin. Surgery is the clutch factor here. It gives us over 80 something percent of our survivability. The next in line for best outcomes are Herceptin and Perjeta. They are also clutch. I found an oncologist that was willing to work with my odd system (that gets just about every side effect a drug has) and she believed me when she saw my body react to the normal TCPH (regular chemo drugs with the Her2+ ones) in an extreme way. I only had two rounds of these, waited 5 weeks to reassess and then my oncologist moved me to Gemzar which is a rare move for an onc. Gemzar is milder and generally used in metastatic disease. But it worked as well as can be. I did not have a complete response, but I had a very good one that I am satisfied with given what I might have traded health wise in forging ahead with the classic cocktail for my cancer type. Had I had the wherewithal at the very beginning of treatment I might have really fought for only Herceptin and Perjeta.
Let us know how you are doing when and if you feel like it. I stand with you in hope and love.
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Thank you Edwards750 and couragement, I appreciate your words of acknowledgment and empathy. Tomorrow afternoon is surgery prep and then Thursday is my procedure at Kaiser. I can't wait to get the surgery over with so I can get my final pathology report and their plan for my treatment. I will look into a 2nd opinion I have family members who can get my treatment plan reviewed so I am feeling supported. My friends and family may not be as supportive when they find out that I'm likely to rule out chemo.
couragement - the usual "cocktail" for Her2+ was not possible for you but did they try just having you on Herceptin because I thought it was not a chemo drug and the side affects were very minimal?
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Hi Deborah,
I am so pleased to hear you are readying for your surgery. May it go smoothly and with ease for you and your surgical team. I did do Herceptin and Perjeta and you are correct that they are not chemotherapy. They are targeted monoclonal antibody therapies. But in the United States they were studied in clinical trials in conjunction with the traditional chemotherapy drugs used for most breast cancers. The taxanes and the carboplatins. So that makes the mix of the chemo drugs and the targeted therapies (Herceptin and Perjeta) standard of care because that is how they were studied. I have only seen a few women on these boards able to opt out of chemo and only have Herceptin and Perjeta. And those women were in other countries besides the United States. So that is what I was hoping to communicate. If I thought I could have had a chance of having only Herceptin and Perjeta I might have looked to other countries to have them without chemo. But I did not have the strength (I have several other medical conditions) and my oncologist promised me she would work hard with me to make sure I did okay, and I believed her -and she did. So when I reacted strongly and adversely to the regular chemo drugs she switched me to a different chemo that has many fewer side effects and it was also effective. Thank goodness.
And thank goodness for your supportive family and friends. May they hold you up in strength.
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Thank you for the clarification ouragenen, I am so naive I hadn’t even considered that I could be refused Herceptin if I won’t agree to the chemo. Everyday I learn something more.
Continue health
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Dear Deborah,
Best of luck on your lumpectomy tomorrow. Rest up and take the time after your surgery to just take good care of yourself and build strength. Much will be revealed after your lumpectomy, as you say, we learn more each day. Be sure not to be hard on yourself for the unknowns. Treat yourself with all the kindness you can muster.
Thinking of you with strength and love.
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Since my mastectomy in April, I have had little communication with my doctors. I did see my oncologist 3 times after surgery when we discussed treatment which I refused. I have also been going to PT. However my nurse navigator has called me a few times wondering what my plan is. I spoke to her yesterday and asked if she knew anybody that could take me as a patient knowing my decision about treatment. She called around today and recommended a doctor that I do think will be a good fit. She spoke with his nurse and told her about me. Both felt under the circumstances he would be a great fit. So I am optimistic. I need somebody to follow me. One thing I really like is that he is fit and values nutrition.0
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I had a nurse navigator too. She was awesome.
Bottom line is it’s your body and your life and your call. I’m not sure I wouldn’t have refused chemo had it been the treatment I needed but as it was I only needed radiation and I opted to do just that.
The only advice I will give you is be sure of your choice and don’t second guess yourself or look back at some point and wonder what if..
Good luck!
Diane
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Hi couragement, I had my surgery at 8 AM last Thursday. It went fine I was there until 4 PM just due to the nausea and sleepiness from the general anesthesia. The surgeon said he removed the cancer (what I suppose was a 1.3 cm lump) and two sentinel lymp notes and that they were tiny.
He said that the initiall pathology report looks really great that it did not seem to have traveled to my sentinel node‘s or beyond. I was pretty drowsy but he told my family he thought I might not need chemo? I don’t understand if I am triple positive HER2 how is the treatment plan not supposed to include chemo? Not that I would do it but I don’t understand his statements. I also don’t understand why when I look at my online records (Kaiser app) It shows that I am IBC how can I be both IBC at HER2 triple ositive? So confused can’t wait to figure out what the final pathology report says.
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I know this is an old thread but I'm in the same boat as monetswaterlillies. I don't even know what type I got yet cause the nurse couldn't understand the report.
I'm about to be 44 and due to many bad life experiences especially in the past 10 years with the last five being exceptionally cruel and health issues that have gotten worse as time passes this was the last straw for me.
I will do surgery going the mastectomy route to guarantee its at least gone there but I'm on the fence with rads and chemo is completely off the table.i would try holistic treatments but they are not covered and I am living in poverty so my only other route is diet and exercise.I will not physically and mentally survive chemo. If they give it to me it would have to be in the psych ward especially if I have the bad side effects.because I would finish what cancer started.on my terms.
I'm sick and tired of people telling me life will get better. They been telling me that for ten years and it didn't. It got worse and now it got worse with a BC diagnosis on top of the crap cake.i got no significant other,I got no children,I got no local friends due to the issues I've faced. I got nothing and work is just a way to pay the bills.
So I'm not refusing all treatment. But I am refusing most. It's hard to get people to understand that when you got nothing to live for and your QOL is already in the crapper then making things worse to help yourself live longer just isn't worth it.
The trick is getting the doctors to accept it. Just thought I would add monetswaterlillies is not alone.we all have our reasons to fight or not to fight.
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The nurse couldn’t understand the report? Seriously? What did your doctor say? That’s bizarre.
I don’t blame you at all if you choose not to do chemo despite what your doctors advise. To be fair I didn’t have to make that choice because my Oncotype score was low so I dodged chemo. I’m not sure what I would have done had it been on the table. Some women have made it through chemo with no debilitating side effects but many more have had a very difficult time.
I also understand when people say it will get better. They just don’t know what else to say. You really have to walk in our shoes to understand what we are going through.
Whatever you decide you are in control. Your medical team might protest your decision but at the end of the day it’s still your decision.
Good luck whatever you decide.
Diane
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Hello to everyone, and hope your day is going well. We have been away on a quiet restful break from home and life, at a place that allowed us peace from worry and busyness and nw it's back to life again. Not sure if I shared that my scans in May and June were clear; a repeat blood work for tumor markers was done on June 18, and they are slightly down, but not enough to satisfy the oncologist, so am having more done in mid August. Further scans will be done in December, so it does seem like a definite change of lifestyle for a while. Knowing these tests await us just reinforce the possibility of recurrence, but I've made up my mind to just put in the back of my mind and try not to think about it.
Lovely sunny and breeze day here today after some almost unbearable heat, so we are enjoying while we can. Take care, and know you are in my thoughts.
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Hi Deborah!
Congratulations on your surgery. I hope you are recovering okay and not too uncomfortable. Great news about your sentinel nodes! Sometimes the surgeons are not too familiar with all the different subtypes of breast cancer. Being triple positive almost always requires Herceptin, and I honestly have not heard of anyone not being offered this since it was released for use over 20 years ago. I would wait to have all the data once you get your pathology back, as IBC is an entirely different kind of cancer than IDC. But I have indeed found that surgeons are often not as informed and sometimes don't even read the diagnosis as they don't have as much to do with that portion of treatment as an MO or a RO. Right now I would just focus on healing up and getting strong. I hope you have been sleeping, eating well, and resting. Do you know when you will see someone about the pathology?
Strength and love coming your way!
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Thanks. I'm lucky that my Counselor is the same way and says I can choose whatever I want. I am already trying alternative ways like weight loss,diet and exercise to combat what I can now and later if I beat this.
To be fair she tried.even went to the doctor and asked him to talk with me and he said not until my appt which was about a week away (and is coming up on thurs.). He actually wanted me to make an appt that was over two weeks later. He's my GP. I think I said at some point during the the phone call "you don't tell someone they have cancer then make them wait over two weeks for more answers!" Which is why I have no clue about my diagnosis at this point.she did stress its early but early can mean anything and still have heavy life debilitating treatments.needless to say I'm not impressed with him right now.
In all honesty the only time I would probably consider chemo it is if I was TNBC And I would beg for low dose or else be hospitalized with a psych watch because I know exactly what I would do if it got more then I could handle.i am barely holding on to the will to live as it is it wouldn't take much to tip me over.im so desperate to avoid it that I would literally go flat (being morbidly obese I don't qualify for most recons) then have chemo and rads ,although with rads it's more it lifts my risk for esophagueal cancer which is already higher because of acid regurgitation. And colon cancer in my moms side.and heart attacks on both.The way things or going I'm going to end up in the chemo chair one way or another,really and my system goes wonky on simple meds so imagine what it would be like on chemo and tamoxifen.
I wish the it will get better was recently for BC. .They been telling me this for 15 years now as things for slowly then quickly worse. The past 5 years actually have been a deep hell. Now I got a cancer dx on top of it.
I have started asking those who say that to me "WHEN?!?"
At this point I would be amazed if I lived til sixty due to all the strikes against me. 50 really.i might be too optimistic with 60.
Blessed be
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I am now 63. I was diagnosed with DCIS in 2011. I chose to have no treatment and went on with my life. I did a great deal of research before making the decision. I didn't have another mammogram for three years. The result was absolutely normal. I do not trust the way that we are being diagnosed and offered treatment as for real cancer with DCIS. I am one of the ones who did absolutely nothing after the biopsy. I would really like to communicate with other women in similar circumstances.
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bblue, that's great news! Sadly, I was diagnosed with DCIS and surgery discovered a not insignificant invasive cancer. I had thought long and hard about taking a wait and see approach. Perhaps it was good in my case that I decided to go with surgery.
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I'm so sorry that happened! I don't remember the size of what they found but it was so small I believe they got it all in the biopsy. My experience has left me deeply conflicted about the treatment women get. My gyn even let me stay on hormones after the diagnosis. I had severe migraines w/o estrogen. I"m off the hormones now but have real trust issues. I feel like I would have had surgery and all the treatments for no reason. I'm wondering if there are any women like me out there.
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Most women just follow standard of care. I too have gambled in some respects despite the radical surgery choice.
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I’m 52 and doing it all. But....after one week I am praying I can preserve. If it comes back I don’t think I would want to do it again at a later stage in life. I say each person needs to make their own decision. I wish there were statistics/data on those who opt not to have any treatment or surgery and no chemo etc. we are all scared and brave in our own way.
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I wish there were stats too Jimi. Idk anyone who didn’t go the conventional treatment route. I did because I was too afraid to do otherwise. To me it was like playing Russian roulette with my life to not follow protocol but that’s just me and what does that say about our choices when women are still dying with the treatments? So you roll the dice and hope for the best
One thing I can say with absolute certainty is if I had to have chemo to buy me a few more months I would definitely not do it. QOL is more important.
Diane
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I was diagnosed with DCIS when I was about 40. I am now 66. I had a lumpectomy and then a few days later called back to take out more since margins were not clear. I told them then absolutely no radiation or chemo. At that time, mastectomies was recommended a lot. My oncologist was furious with me as was my family doctor for refusing treatment. Here is something funny to share. I saw the oncologist by myself. My husband was traveling. The oncologist was shocked I was there by myself. He wanted to immediately put me on anti depressants. Said every woman diagnosed with bc goes on antidepressants. Really? I was fine. I was in the process of moving as well. Very stressful. I admit I just blew off the cancer. Just went on with life. A slight interruption. I did the mammograms every 6 mos for several years. Then once a year. I also was called to participate in different trials. Again, I just felt DCIS was just a pre cancer issue.
After 20 years, I never thought bc would happen to me again. It has. IDC. Other breast. I also had DCIS as well with IDC. I do not regret my decision years ago. These cancers are unrelated, or so everybody thinks. I was cancer free for a long time. I am grateful I was. I have once again refused conventional treatment. I realize two different cancers. This time aggressive. I want to enjoy what time I have left. I have had a great summer. I hope my cancer stays away, but each day I mark in my mind. I have my husband take lots of pictures of our time together now. I have had a full life.0 -
Nobody can tell you what to do or judge you for how you have decided to treat cancer. We make the decisions. Unless there is a obvious cure that doesn't destroy QOL I say they are mere advisors at best.
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It’s your body, your life, your call. Whatever you decide just don’t look back and say what if.
Diane
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I feel like it’s conventional medicine that is saying “what if” and using that as reason for aggressive therapy. I had surgery but that’s it so far. I’m going back and forth about Tamoxifen but still can’t decide. I truly feel that it’s lifestyle that will make the most impact for me. For me, my focus is diet and at least 150 minutes of exercise weekly. If it comes back, it comes back and I’ll still have many treatment options at that time if I choose to do them. I know this isn’t everyone’s thinking. Like the OP said, it isn’t a “popular” way of thinking but my body my choice.
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There are stats. For early stage bc surgery alone generally shows 70-90+% survival at 5 years so I don't quite get the 'oh that's so encouraging' replies when someone posts they just had surgery and nothing else and are fine x years later. We know that if suddenly all we had available was surgery, the majority of patients would survive a long time. We also know there is somewhere between 1 in 10 and 3 in 10 chance it will come back metastatic and be ultimately fatal.
The point of chemo & hormone therapies is to reduce those odds of it returning as stage IV. I'm not trying to convince anyone to do those therapies - obviously it's your choice. NHS Predict & LifeMath are both good calculators. Of course the stats don't say anything about the individual - they only talk about what we know from large population samples.Regarding the DCIS biopsies - frequently the biopsy does remove the whole pre-malignant tissue. Surgery after is meant to ensure margins & again statistically reduces risk of it returning.
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