CALLING ALL STAGE I SISTERS
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I had a PET scan after the initial visit with both the RO and MO. The MO ordered it. After that and receiving the Oconotype score, the decision was I would have the brachytherapy radiation, and go on the Letrozole. Had the 6 month followup about 3 weeks ago and everything indicates NED. I am thankful to God for leading in this...Next follow up is in October, will again see both the RO and MO.
Vickie
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Unfortunately her sister, who had been diagnosed as stage 0 DCIS developed tumors in her brain. Her doctor couldn't explain how that happened given how early they had caught it. It has us all a bit freaked out. My friend is thinking that if they had done a PET earlier they might have been more successful. And she is very insistent that I get a PET.
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Hi all,
Been away, traveling....
Glad to hear updates from Annette and Granny....hugs and prayers for your families right now.
I had the best week end at my "last" college graduation. Everything was just perfect including the cloudless sunny weather. We had lots of time with our grad and his gf....5 other family members made it for the day. We headed back from MA on mother's day and stopped in CT to have lunch buffet with 2 of 3 daughters and 4 adorable grandkids...sometimes it's just so good......and I am grateful. Classes end tomorrow and so does a lot of stress for a few weeks.
Welcome to the new ladies who are navigating treatments.
I am on Letrozole and at first it was pretty awful; but seems to be moderating and I think I can stay on it for awhile. A lot less pain; not as much depression. Hugs to all....and belated Happy Mothers' Day to all the moms.
Joan0 -
boatergrl - That is scary. If you'd feel better having a PET scan perhaps you can persuade your MO to order one for your peace of mind. Tell him/her your story and concerns and say your mind won't be able to rest unless you have one.
My BS and MO predicted that my Oncotype would be in the very low range based on how "well behaved" my tumors were and the fact that I was diagnosed very early (fought and begged for a "screening" MRI due to very dense breasts, which found 5 masses/2 cancers). My Oncotype score was 18, which is not high but is just in that moderate risk range.
Sadly, there are no guarantees here. We make the best decisions we can based on our research and, ultimately, our gut instincts.
Best wishes!
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TinaT: My doctors said the same thing yours did - predicted a low to very low Onco score based on a number of things. Made plans for me based on their predictions. Then they all fell over faint when it came back at 42. Part of me is still angry about their assumption; I might have chosen a different treatment path (MX vs. lump, for example) had they considered the possibility that - as you so eloquently note - there are no guarantees here. My gut told me something was going to be off, but I didn't listen because I figured the doctors know everything, right?!
Now that I'm on the verge of completing chemo I wanted to know about follow-up testing, and have been told there is none. Go back to monthly self-exams, see the doctor yearly, call if there's any pain... It worries me, but I realize this is standard protocol for someone with "my" cancer. It's frustrating that there isn't more support for follow-up testing once treatment is done.
boatergrl: Hopefully your doctor (and insurance company) will listen to your concerns and offer some kind of follow-up. Even those of us with "early" and "treatable" cancer sometimes find out it's not that simple. I'm sorry for the loss of your friend's sister; testing wouldn't have prevented mets, but at least would have given her important information in treating her cancer and living her life.
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Boatergrl, it seems to be a preference of your onc. I had CTs and a PET during staging, and then had one when I changed oncs 5 years ago. That was partly due because for some reason my medical file that I was given to take to my new Dr. was incomplete for some reason. I have the tumor marker done yearly now, and I think I will be released from follow ups in one more year.
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I had a breast MRI done before surgery but no PET or CT. I have bloodwork and TMs done at the MO and diagnostic mammos every six months.
NancyHB - my basic stats were very similar to yours, but my Oncotype was only 8! As I keep hearing over and over, each person's BC is unique and no one will have the same path as someone else with basically the same stats. One person may have a high grade, stage III tumor and never recur, and someone with DCIS may end up with mets.
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I had a Pet scan after surgery as a baseline.
Nancy HB my stats are similar to yours and my onco score was 23. You made mention your choice. Once you are finished with chemo if you want to go the MX route and forgo rads you have every right to do that. You are not stuck at this point. Also I would ask again about followup. I have had to see my MO every three months for the first two years then I will go to every 6 months for the next three or as long as I am on hormonal therapy. Once I am off of hormonal therapy I will go to yearly. My MO never releases you he wants to see you yearly for life.
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To chime in with everyone else, I had an MRI before surgery. I did not have a CT or PET scan. I am have blood workup and TM's taken every three months at the MO and a diagnosic mammogram every six months.. speaking of which.. my first diagnostic mammogram is this Thursday morning. Just a little scared.
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Good luck at your mamo! When I had my first after my mastectomy I was surprised at how calm I was... Until they told me my results were good and I could go- then I started sobbing. Guess all my fear and anxiety just came pouring out!
Thanks everyone for your info on scans. It seems like my OC isn't out of line by not ordering it. I think I would have more piece of mind if he would do the test, but he says the insurance won't pay and it's needless exposure to radiation.
I am so thankful to this website and all off you. When I'm feeling afraid, alone or just needing info you are all here! It is such a comfort!!!0 -
I had a CT scan and a bone scan after my lumpectomy and before my chemo. Other than that there has been no word of further scans. Guess that is another question I need to ask. Of course I still have 3 more chemo, so it may be a bit premature!
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My MO would not order a tumor marker test as he deems them unreliable, so I had my naturopath order a CTC (circulating tumor cell) test and it came back zero...no cancer cells circulating. I have not had an MRI or PET scan...ever. I didn't do chemo or rads, but I follow a strict anti cancer diet and take loads of supplements.
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I'd love to hear more about your diet. Anything I can do to keep the beast away is worth it!!!
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Karra, I would like to hear about your diet and supplements also!
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Great to find a place to hang my hat. I was originally diagnosed with DCIS but they always were suspicious that some IDC was hiding in amongst it. Following a lumpectomy and SNB they found the margins were not clear, it was decided a MRI should be done. The MRI showed a larger lump than the previous of 6cm of DCIS plus a small IDC tumor. A UMX was scheduled and the 6x3mm of IDC was found. Hence I went from stage 0 to stage 1. It was agreed that no additional treatment was required even though I was 90%+ ER/PR+. So I am currently undergoing reconstruction of my new bionic boob.
As for tests, no additional tests will be carried out for me. I will have a mamogram once a year and will be seen by the Breast Clinic at the same time. After five years if nothing untowards happens I will be removed from their books and will have a mamogram as dictated by the breast screening programme which will be once every two years.
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Welcome, Hils.
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Welcome Hils glad to see you came here from the March MX thread.
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Welcome Hils
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OK, I need a new OC. I mentioned before that he came highly recommended, but I think he's too busy. It's not uncommon for him to forget to order tests or give me results but they have been relatively minor tests such as a vitamin D level. Saw him today and asked the lab tech specifically what tests were being done and it turned out he ordered the cancer marker test for ovarian cancer not breast cancer. The lab tech laughed and said good thing you caught that! I just don't have confidence in him and want to feel like I can trust him with my life-literally.
I'm going to have to go outside my area and would love suggestions as to how to find a good dr with a good reputation. Since I won't know anybody I don't want to shoot in the dark.0 -
Hi boatergrl: If you do not have confidence in him, it's time to find one that you can trust with your life!
I've very blessed that my MO, RO, GP, etc all give me that "warm fuzzy" that I insist on. I am trusting them with my life and I would not hesitate to change if I didn't have confidence in them.
I hope you can find someone close that you can trust. My suggestion is to call and see if there is a breast cancer support group in your area and I would think those in that group could recommend someone. That's how I chose my MO and RO!
God bless you.
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Had the best BS, MO, RO anyone could ask for..............you have to really "fall in love" with them to feel the confidence.....................so important............hugs.
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Ducky, I absolutely dislike my MO and her mannerisms and her aloofness. I found one I like - did love until he let his resident do my all-important exam and he did not check himself. The reason i stayed with my first MO who I do not like is because all my docs are in one place. And the university med center that the other guy is at does not have the state-of-the-art services if I should ever need them again.
I have been seeing both - not sure how much longer insurance will pay for that....I wish I loved one of them.
No body scans for me....and every time I get a back pain or an abdominal twinge I panic.
Can anyone tell me if any of those scans are in closed MRI-like tanks? I don't want that at all.
It seems like an eternity until my next mammo appointment...am so distrustful of my right breast that it may also betray me...
BC just doesn't go away easily.
Joan0 -
Hils...Welcome to our sisterhood....sit down and get comfortable.......0
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Joan, I'm right there with you when it comes to worrying about aches and pains! I was never one to fret over that kind of stuff, now it's always on my mind. Cancer has turned me into a lunatic!!!!
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Finally...I found a new MO.....I made an appointment for June...she is female and very local.
i have to go there and sign the release papers...I had my MO for 7 years but Insurance changed so some of my DR's...starting from the beginning...don't like it but no other choices...I should be grateful i have coverage.
Next month i have 6 DR appointments...it's crazy but it will be done by June 28.....
My yearly mammo...MH...Dermatologist....PD...MO..MH again. I see her every 4 weeks.
Joan....I still feel the same way...when the itch of my scalp got so bad few months back.....I thought i had scalp cancer....It's crazy...
Hugs and Good Night All ♥
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Thanks for all your welcomes really appreciate them. It is great to have a place to be able to just hang out, vent occasionally and share our thoughts and feelings. Following the last eight months of nuttiness I found I was beginning to lose the plot and depression was knocking on my door. I could have gone down the tablet route but decided instead to get some counselling. This is really beginning to sort my head out, so that is real bonus.
This is a strange old roller coaster ride, will be very happy to get off
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Joan811, the pet scan is like the MRI machine. When I went in for my original one, the machine worked for about 30 minutes and then broke down with me in it. They had to ake me out and send me immediately across town to another location as I already had the expensive radioactive junk in my system and didn't want to waste it. It has made me leary of those enclosed machines since.
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I agree you need to love your MO. My first one I did not love so I found another one. Same with my BS. I now have a team a totally trust should anything pop up again I know they know me and what makes me tick and will help me with the decisions that are best for me.
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I don't love my MO but he is competent and has good follow up which is important to me. When I go to his office, I don't have to wait half a day to get in, and he always calls me back personally with my results. His bedside manner isn't great, and he is firmly stuck in his "standard of care" ways, but other than that he's ok.
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Had my first diagnostic mammogram today. All clear :-) Yay & Whew!!!!!
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