Class of 2009 - Sisters in the same time frame
Comments
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Renee, I tried both graphs. I am not sure which combonation to use for the chemo regimen my onc said I would have. He said I would have Cytoxan and Taxotere over 12 weeks. So, I don't know if that is 1st, 2nd or 3rd generation of chemo drugs. Does anyone know?
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jburke1,
You're probably under 2nd gen, "DC*4"......D=Docetaxol which is another name for Taxotere and C=Cytoxan. This would be given every 3 wks for 4 cycles which would give you the 12 weeks of treatment. Hope this helps a little, but I have to say this chart put me into Stage IIB and all the reading I've done tells me I'm IIA, so not sure what's up with that.
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Thanks Beach. I put in my stats and it would increase my life expectancy by one year with chemo and .5 years without chemo. So, that is a difference of 6 months. It kept me at Stage I. Still not sure if it's worth it. UUUUGGGHHH!!!!!
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jburke1,
Keep in mind that this is based on previous trials so it's a pretty general guide. Our individual factors still need to be considered ie. general health, weight, amount of exercise, etc. Every person's breast cancer is a little different and so too are the side effects to treatment. What is your inner voice saying to you?
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Hmmm. On CancerMath.net, the chart shows that I would gain 4 mos. of life if I use Tamox.; lose 1 year if I had no adjuvant therapy. I listed my nodes as negative on there. Now the only thing is WHAT IF there were some micro mets that escaped the pathologist's eye.. That is a BIG IF, big enough that I might want to do the Tamox anyway. I have some time to think on it.
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My gut tells me to give it my all, and just do whatever I can to make sure I don't have this come back, even though I know chemo is not an end all be all. But, then I think, for 2 or 3%??? It is worth it. I just have to make it through this week and see what all the docs say that I will be seeing. I need to put this to bed for now and not dwell on it. The more I think about it, the more confused I am getting.
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Well, it's back to the surgery center for me tomorrow for a 1-hr procedure to trim a strip of yellow skin along my left incision and resuture that portion of the incision. At least I won't come home with drains as I did 5 wks ago after my BMX with 1-step recon. It's disappointing to take a step backward in recovery, but, hopefully, this will do the trick.
Blessings on all of us and wisdom to those angsting over whether to do chemo or not do it.
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Hi Carole'
What kind of anesthesia will you have? You make it sound quick and easy but I only perceive it that way because it is not me!!! I hope it all goes smoothly and painlessly. No fun to have to revisit the "scene of the crime." I am sending good vibes your way.
Pam
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General anesthesia. My PS doesn't believe in pain, and I agree totally. Thanks so much for the good vibes.
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Burk...I agree with our decision to do the chemo. They also gave me a choice before the lab came back with micro mets in one node. There was no question for me what I was going to do. I want to meet my grand-babies. I had 6 TC and did relatively well until 4 through 6. They kept me down with fatigue. I would do it again if I had a choice.
Best wishes on your dicision.
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Had my MRI yesterday and I go this morning to get the results and consult with the radiologist. I had never had an MRI before, and I didn't really like it much! Laying on my stomach was bad enough and then having to put my arms up over my head was no fun either. And then the dye in the IV stunk as well. But, it is over and hopefully it came back ok.
Thank you so much Renee for your support, I am just trying to make it through this week one appointment at a time, and taking all the info I get and putting it towards my decision. One of the Breast Health Nurse Navigators at the hospital I am going to put me in touch with a lady, one year out from DX that had the same situation I did, and about the same age. She chose no chemo. So, I spoke with her the other day. She said she was anti-chemo from the beginning, and it was never really a choice for her, she never wanted it. So, I guess I have considered it a lot more that she may have.
Carol, How are you feeling from your surgery yesterday? Hope you are doing well! I am also sending good vibes your way!
Hugs to all
Jen
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jburke1, Sorry to hear that you're in a "grey" area. Good luck with your decision.
Just a general update: I'm doing the chem it's TC for 4X 12 weeks. I get the port put in this Friday. And then my first treatment is the 11th. Really not looking forward to any of it but I feel this is the best way. Oh, and I should mention that my onc gave me a recurrence rate of 25% without.
Good luck everyone!
Kathy
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Thank you Kathy, good luck with your treatment. Stay strong!
Went for my MRI results and ended up having another ultra-sound. They found another spot under my arm, that is really close to the chest wall. So it would be hard to biopsy. Radiologist said that it is probably nothing, but I have to see what my other docs have to say about it also. I see my surgeon tomorrow morning, and then going to get my 2nd opinion tomorrow afternoon. Then on Friday I meet the Rad Onc. So, this little spot could change opinions of my docs or change nothing. Just have to wait and see.
Take Care everyone!
Hugs
Jen
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Hi ONE-L,
About your question about having a medical oncologist at this time: I think the women who go to a hospital with a Breast Cancer Clinic, say like Mayo or other big hospital, have an advantage in that their situation can be reviewed by a panel of specialists. The way you (AND I) are doing this is we are moving in a serial way from one specialist to another. We start with our surgeon who may or may not be the best one to map our treatment plan, he/she uses a computer to enter our stats and refers us to a radiologist who treats us, then passes us on to an oncologist. Or if the surgeon sees a need for chemo, the order is reversed. Sometimes a plastic surgeon is introduced midway or some other specialist may jump in. I think it is important that someone is coordinating all this, even conferring with each other. So yes, I think you should have a first appointment your medical oncologist now even though their role in your treatment probably will not start until after your RT. I am maniacal about getting each specialist to send a report to every other doctor and I ask for copies of all my lab and surgical reports. In spite of this there are gaps... in my pre-op work up a spot showed in one of my lungs and the radiologist who read the films wrote that it needed to be investigated, like repeat CAT scan every 3 months. If I had not read the report it would have been totally overlooked. It is still a questionable finding and I am still the one who has to remind everyone about it.
I don't think it is unusual for you to not have a med. oncologist yet but I wanted to get established with one as soon as I could. I only saw her once right before my radiation started, then saw her soon after the radiation therapy ended. She is the one who rx'd an aromatase inhibitor for me and ordered my first post op CBC and tumor marker lab work (although not everyone does those). My follow up visit with the radiation oncologist was 2 months post RT and he is the one who has ordered my first PO mammogram. Right now I feel like I am doubliing up on doctor visits, seeing both of them, but I plan to wean myself off of the radiologist when the new year begins. My surgeon said I did not need to return to see him after he released me just a month post op but when I last saw the radiologist he said I had two suspicious moles on my back... why was he even looking at my back?!!!... so I was back to my surgeon today to have them removed. It just never ends!
In a long winded way I am trying to say someone needs to oversee all this stuff and in the end it is usually your medical oncologist (and yourself!) so might as well get them on your team as soon as possible.
You sound great! Take care of yourself... you might even let others take care of you a little.
Pam
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Jen (Jburke1),
I am sorry you are in the "gray zone". I too spent days agonizing on whether or not to do chemo. In the end you will make the best decision for you. My Oncotype score was 18 just putting me in the intermediate group. Deciding on whether to do chemo or not was the toughest decision I have had to make regarding BC so far. I could not sleep for days thinking about it. I am only 31 yrs. old. Because of my age, my complex multi-BC diagnosis as well as this gray zone my oncologist told me I could go either way with chemo. A second opinion told me to do the chemo. Also, research on women with BC under 35 yrs. old shows higher risk of recurrence. After doing research and speaking with my doctors, I finally decided to do the chemo so I could feel I gave this disease everything I have available to me. I decided that I would have less regrets in the future if I did chemo and had side effects than if I did not do it and had a recurrence. I started TCx4 every 3 weeks on August 13th. TC is not as toxic to the heart so this made me feel better. I just had my second treatment today. This regimen is doable. I felt crappy days 4-7 after first treatment and then I started to feel better. My worst SE's were sore throat, thrush on tongue and diarrhea and stomach cramps. Just felt like I had the flu those days. By Day 12 I felt pretty normal other than I started to lose my hair. I have been able to exercise almost every day and I have not missed one day of work yet other than my infusion days. There is no right or wrong decision. You just need to go with what you feel is best for you. I wish you tons of luck and will be praying for you. Take Care!
Yasmin
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Pam, it is good to hear from you. I went to rad onc today and he gave me a scare. He said my margins were only .2mm and that I could either have a mast or a re-excision. He explained everything to me and he wanted me to go back to my surgeon and have him refer me to a med onc and have the Oncotype dx done. I was not devastated, but I told him I needed to do some research and make a very educated decision.
Well, after we left his office, we needed some comfort food, so me made it over to the DQ for a blizzard. While we were enjoying our blizzard the rad onc called and apologized and apologized. Evidently when he called the surgeon and they were comparing their path reports, it seems that there was a typo on the rad onc report and it said the margins were 0.2mm and the surgeons report said 0.2cm, well they called the pathology department and the 0.2 cm was correct. I will not need any more surgery. What a relief.
I am trying to keep records of all my visits and get the reports. I am still waiting on my copies of the path report, but I know that I will get them.
It is just that in the beginning, you don't know who to turn to or what is the best direction for you. Today, I knew that I had choices and I really needed to think and now I know that I have time, that decisions do not have to be made in a week. I wasn't sure that I understood that in the beginning. I think my care has been very good so far and I expect it to continue. The hospital that I am going to has a very large cancer clinic and I know people that have been treated there and they are very happy with the service there.
Thank goodness we have this site, with such caring women who help guide us through, until we can help someone ourselves. When the doctor was explaining everything to me today, the information did not scare me, because I have learned so much on this site. Now my husband was a different story, it scared him to death, but when he finally got calmed down, he was OK. He just couldn't stand the thought of me having more surgery and maybe chemo.
I just want to do whatever it takes to get control and stay in control. I think I am there now and I know within the next couple of weeks I will have a med onc and he will guide the rest of my treatment.
Juannelle
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One-L- Thank Goodness you don't have to have any more surgeries! What a scare though!
Yasmin- Thank you for sharing your story. I am feeling better about making my decision soon. Yesterday I went for my second opinion and he agreed with my first med onc that chemo is an option, but the risks and SE's out way the benefits. He said that rads and HT are perfectly acceptable treatments. So, I may be leaning towards no chemo. You are young, 31 is way to young to be going through this, and I would have chose chemo if I were you also. But I am 35 and I know that is not much older than you, but the doctors are telling me that 35 is where the cut off age is, and where things get a little confusing.
So, I will go see my rad onc this morning, get his input and mull it over this weekend.
I am so thankful I found this group, you are all such spectacular women and I am honored to get to share my story with you and to hear your stories as well.
God bless each one of you!
Hugs
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One-L,
What a nightmare! You were so calm in the face of disaster. Definitely a DQ DAY. We always go for a Frosty at Wendy's after stressful DR appts so I totally understand.
SO glad it worked out favorably. And to the radiologist's credit, he was paying attention and willing to stick his nose in when he thought you were being undertreated. A good guy! Thank heaven for cell phones
so you could enjoy your treat.Let us know when your radiation starts and good luck.
Pam
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Jen and all the young women here,
This disease should be an old women's malady. It breaks my heart to read about you young women going through this. 35 is the cut off to be considered young? You are like the professional athlete who retires at age 35. Well, I wish you could be spared this journey and having to make these hard decisions. But sounds like you are doing your research and getting good advice. My thoughts are with you.
Pam
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Good morning ladies. I am going to have a relaxing day today, no thoughts of doctors or treatments. I am going shopping and getting ready for my cruse the mid of this month. My job has been very stressful lately, along with this medical crisis, I need the break.
It also breaks my heart to read about young women going through this. They have all this treatment and they do not know what the future holds, I mean 40 or 50 years down the road. I am 59, so statistically I should live another 25 years, maybe I will have a recurrence or not. But I probably will not have anything else from the treatment. If we could only look into that crystal ball and see which group we would fall in, the 12% ro th 88%, or what ever the numbers are.
The great thing for us compared to 20 years ago, is we have the Internet, and we can get all the information we need to make the best decision. Plus we have great diagnostic equipment.
Have a great weekend everyone, I guess we will all get a break from doctors and treatments.
Juannelle
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Well, I decided not to do chemo. After 4 doctors basically told me the same thing I am going with Radiation and hormone therapy. Although, my MRI did come back showing another small mass under my left arm. My onc and surgeon may want to explore that further. Still waiting to hear. I am also going to be doing the BRCA test.
Hope all is well with everyone.
Jen
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Hi Jenn,
As Roseann Roseannadanna said, "it's always something!" Just when you have made a decision, something else pops up!!! I am so sorry for the additional stress. Of course it is nothing, but has to be checked out. We are all thinking of you and wishing you the best,
Pam
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Jen, positive thoughts going your way, I found lumps on my throat shortly after my lumpectomey, 2 months later after, ultrasound, biopsy, blood tests they do not know why my thyroid has multiple nodules on it but it is not cancer and is doing well, more tests in 4 months to verify and re-check, hope your results are B-9 too!!!
Carol
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Jen, hoping for B9 results and a negative on the BRCA.
Today is 9 days out from my "incision revision" and I feel good. The incision looks good. Sigh of relief!
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Hi Carol,
I have two theories:
1. We have always had or are getting new bumps and lumps and no one notices or worries about them until we get a breast cancer diagnosis. Then, especially if we mention them to our doctor, they have to be checked out...
Or, and this is what I really believe,
2. Cancer alone is an assault on our immune system. Add surgery, anesthetic drugs, pain medications, chemotherapy, radiation, hormonal therapy and the STRESS of it all and it is just overload to our bodies. No wonder different, uninvolved organ systems complain and act out.
I, too, send my positive thoughts along to everyone waiting for the latest test result. Hate the waiting!
pam
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My surgeon called me yesterday and said that they will just keep an eye on that spot with follow-ups, mams and MRI's. For now just forging ahead with treatment. Thank you all for your support, I am so glad I have this to turn to and have such great women to share this with.
Carol, I am glad you are feeling good from your latest surgery! Take care!
Hope all is well with everyone!
Hugs
Jen
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Hi, Ladies. I'm so glad you're here, although I can't say I have anything informative to add to your discussion since I was just diagnosed last month. I did my pre-admit at the hospital yesterday and am scheduled for a needle-guided lumpectomy on the 17th (2 days after my 70th birthday!). I've had call-backs on my mammos the last 2 years, but they could never find the microcalcs they thought they saw. The last one was Jan. Then in May, I accidentally felt a lump and we have proceeded from there--2core biopsies, 1 benign and the last on Aug. 16 gave me my diagnosis. I have to say I'm scared to death but oddly calm most of the time. I know I'm "elderly" but inside I'm still 17. Glad you're all here to listen, and thanks, Carol, for setting the topic.
Judy
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Hi Judy! I am sorry to hear about your dx, but please know, you are among friends here
Good luck with your surgery, as I am sure everything will go well for you. This is a very hurry-up and wait and see process. I have learned that quickly. I have only been diagnosed for about a month and a half. Take care and keep us posted on your progress!
And age is only a number! It is how you feel on the inside that counts
Hugs
Jen
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Judy Positive thoughts going your way, hope all goes well, keep us posted and I am glad you are still young at heart.
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Welcome, Judy. Sorry you had to join our bc club, but this is a great group of women on bc.org. The sisterhood has meant the world to me since my dx on 6/25. I wish you great success with your surgery and treatment. Keep us posted.
Blessings to all.
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