My choice--refusing treatment
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Thank you, Racy. I will be meeting with a radiation oncologist in the near future, I hope. I just had a call giving me an appointment for Monday with an oncologist in the BIG city to discuss treatment options; anything that happens after that will be done closer to home. I didn't know that a person could have a shorter course, though I was aware of partial breast. A lot of it will hinge, I think, on what they consider optimum treatment for Triple Negative. That said, I would rather have just a couple of quality years with my husband than to spend years fighting side effects and no quality of life at all.
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53Nancy, I have had NO side effects from radiation, and I got the full course. You should not give up on treatments when you don't even know what side effects might, or might not, happen. I wish the best for you whatever you decide.
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Racy, I have changed my information to include the DCIS, but I have a feeling it will still show first, but hopefully on another line. I wonder if I should omit it all together. I just got the results of the Chest, Abdomen and Pelvic Scan, and it says I have "indeterminate focus on T11 and L3/L4" of the spine. My nurse-practitioner has no idea what that means.
pupmom, I am not going to rule out radiation; it only makes sense to have it to at least target where the cancer began in the first place. I do recognize that we don't know each individual's story or what their lifestyle is, and each person is going to have a different experience with treatment. I do like the possibility of a shorter course and partial breast radiation, which I guess iradiating the area may mean catching stary cells, even if the cancer "was totally removed". My concern is whether possible stray cells may have been busy growing in the little over three months since my lumpectomy.
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I am sorry what u are all going through. Back in April of this year, I did only one chemo treatment of doxorubicin n cytoxan. On that day, I got a bad burning sensation through my entire body. Along with internal tremors. This was a reaction to the chemo medicine and my old oncologist doctor didn't care, just said I had chronic anxiety. I am so glad I didn't take any more treatments of chemo. Unfortunately, I am still battling stage 2 B breast cancer with positive in lymph nodes. I don't blame you for refusing chemotherapy treatment.
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I am sorry what u are all going through. Back in April of this year, I did only one chemo treatment of doxorubicin n cytoxan. On that day, I got a bad burning sensation through my entire body. Along with internal tremors. This was a reaction to the chemo medicine and my old oncologist doctor didn't care, just said I had chronic anxiety. I am so glad I didn't take any more treatments of chemo. Unfortunately, I am still battling stage 2 B breast cancer with positive in lymph nodes. I don't blame you for refusing chemotherapy treatment.
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53Nancy, yes we all are different. But I think sharing our unique experiences can be helpful to each other. Btw, your diagnosis line shows IDC and nothing about DCIS.
Just want to add that nobody who has had invasive cancer ever really knows if it is all gone. Those miserable sneaky little cells can hitch a ride through our blood vessels, even without lymph node invasion.
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Nancy, re: stray cell. There is a blood work called "circulating tumor cells" (CTC) that you can do to cell if any are floating in your system. JustFYI.
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hopeful, I heard that test is only for people who are not NED. Is that true? My oncologist said it wouldn't apply to me.
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Meow, I think that is correct. Seems to be for people with metastatic breast, colorectal and prostate cancer. It monitors how effective treatment has been.
https://www.mayomedicallaboratories.com/articles/features/ctc/index.html
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pupmom, I find sometime that my diagnosis line will not update for about 24 hours. I guess DCIS showed first because I had it and the IDC marked on the same diagnosis, and it was shown in alphabetical order.
hopeful_36, I have an appointment to see an oncologist in the city for Monday, and will ask about the blood work, and also see what they have to say about the "indeterminate" finding. I would think, if it IS metastatic cancer, that it has to have circulated through the blood, as lymph nodes were clear. That said, I have come to think that medical reports are only as good as the person who reads them. The bone scan did not show this finding.
I will continue to follow my regimen as long as I can, and hope the finding in the spine is not positive for cancer. I do believe it could be treated with external beam radiation, and I would rather have that than go through another scan. I have been told that the radiation from scans is 100% stronger than that from x-rays.
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Is the original poster no longer on here? That's too bad. I really wanted to follow her progress.
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hopeful...My docs at a major NYC university hospital told me that test is not valid for stage 1.
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53Nancy, if you have a metastatic recurrence, there will be little point in doing a BMX.
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I am curious about various posters' Oncotypes. Some have mentioned theirs. I realize triple negative and HER2+ folks won't have one.
I had bad traditional pathology with grade 3, LVI, high ki67% and my biopsy showed Her2+, a post surgery IHC was equivocal and two retests with FISH were negative. Not a simple picture. Surprisingly I had a low Oncotype.
I skipped chemo and radiation after two mastectomies, at the suggestion of and with full support from my MD's. so I didn't feel 'alternative.' after 3 years of Femara I am still not sure how long to continue.
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My Oncotype score was 14. Even with two positive nodes, I was at greater risk of dying from chemo than cancer. That means I did not get chemo and am alive and kicking 6 years later.
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Momine, I suppose you are right. However, I got a copy of the Scan Report this morning and when it was read to me over the phone yesterday, they left out the little word "sclerotic", which would indicate to me it is more a matter of calcium build up. This makes sense in light of the fact that I have Osteoarthritis in those points. I am going to keep thinking that until my appointment on Monday a.m., and see if they agree. The report just said COULD BE metastatic lesions, but all other tests have been negative.
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meow, I was recommended it as an alternative to PET/bone scans to check of mets. I didn't want to expose myself to the radiation with the scans, so that was a recommended alternative.
dad, hi. What do you mean "not valid" for stage 1? Meaning, it wouldn't pick anything else in the system?
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I appreciate your post...there are some clinical trials going on currently and if you have low-medium grade tumor you could participate and the TX are noninvasive. I was considering it but I don't qualify cuz I have high grade tumor
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hopeful, I will ask my oncologist again. I would like to know, I guess, if I have a metastasis.
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hopeful36...not valid means the test carries no weight. It can be elevated for many other reasons besides cancer. Hope that explains it. Good luck to all.
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I did chemo first and at the time of surgery my initial tumor was all but gone, but DCIS was found in the original tumor bed against my chest wall. I included it as a second diagnosis line because that DCIS is what determined I had to do radiation. It may not have been invasive but it definitely changed my course of treatment and prognosis.
Just felt a need to post this.
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Update! I saw the oncologist yesterday and ALL tests have come back negative for cancer, so I have chosen NOT to do chemo. I have decided to do the radiation, not because I really want to, but because it makes sense that if there is a possiblity of stray cells in the breast, to treat it without affect the whole body. Most people are not in agreement with my decision, and perhaps the radiation is also a compromise for them, but the oncologist will have a teleservice meeting with me in January and I return to see her in April. She asked me if I would leave the door open for chemo, and I said yes. I got a call today that I go to see the radiation team tomorrow, so things are moving along. I hope things are going better for all of you.
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Therealsvveetgirl123, Chronic anxiety causes bad reaction to chemo?? So much for bedside manner - Blame the victim.
I was given a short course of whole breast radiation but I think you get a stronger dose each time. I didn't have any side effects other than a little pinkness. I had a lumpectomy but I am refusing both AI and Tomoxafin (I took Anastrozole for 4 days - terribly painful), apparently it killed my immune system also because I ended up in the ER with an infection which was treated with equally horrible drugs for 10 days. Soon after, I was diagnosed with posterior vitriol detachment. Too much stuff all at once for me not to suspect AI. I just can't accept the idea that it was all just a coincidence. I have an Oncotype score =14, Ki-67=5% and no node involvement. I'm 72 and the fact that these drugs are prescribed one-size-fits-all without reguard to age and weight is what freaks me out the most. At my age and family history, I fear heart attack and stroke more than my relatively non-aggressive cancer. I hope I'm not being totally foolish but I'd like to enjoy the rest of my life.
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Sara536, I don't think you arefoolish. All we can do is handle things the best way we can. I wish you all the best in recovery
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Anyone HER2+ and refusing conventional treatments?
I was HER- first time around for DCIS (2013). 2017 recurrence, they've tested it twice with results "unequivocal". Retested for the third time, and it turned out to be HER+.
It'd be good to hear there is someone else who's gone alternative with HER+.
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Hi, everyone. I am starting a short course of radiation therapy on Nov 20th, 16 treatments over three and a half weeks. I read on another forum to avoid carbs at breakfast because they seem to increase fatigue. I am looking into creams for my skin care and have found Aquaphor. I am hoping to find a source of Calendula oil or cream as it seems to be highly recommended. Has anyone tried Aloe Vera gel directly from a plant?
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herb pharm organic from amazon is affordable one oz. calendula oil I have so much aloe from so many years, have used the plant once or twice, feels food but usually do
n't get around to it
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abigail48, thank you.
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Hi everyone. I had my first radiation treatment today. Not as fearful as I expected. BUT I have been told they would prefer no green tea, no cabbage leaves, no Aquaphor, no calendula cream, no aloe Vera.They told me the only thing they want me using is Glaxal or Lubriderm. The radiation therapist said they don't want any oils on the skin to interfere with radiation, but I am wondering if I only use the stuff I have AFTER the treatment and at bedtime, then shower in the morning without using anything until after treatment, would it really be a concern? I am to take my lotions/ointments in tomorrow so they can look at them. They say that using aloe vera (I have a plant), green tea, cabbage leaves are old menthods of skin care which are no longer in use. Supposedly, cornstarch will cause a yeast infection!
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In 2009 I was ok to use aloe vera but not calendula cream. At same time,my friend at another facility a mile away was told only to use Aquaphor! At night I put on calendula after my shower, had radiation in the morning, applied aloe vera in the changing room and again in the afternoon. Some women are forbidden use of anything - I have actually read this in the radiation thread. I think your plan makes sense. Bring a bottle of Lubriderm to show them and then do whatever you want. They might be right about corn starch but I would think that would be a large breast/summer time problem. Good luck with your radiation
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