CALLING ALL STAGE I SISTERS
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JenniferMorgan04 - My Oncotype score was 18, the lowest number in the intermediate range. I was diagnosed early and also had clean nodes, but I had both ILC and DCIS (separate tumors). My MO initially used Adjuvent Online, which is a statistical model based on health, path report, etc. but it doesn't analyze actual tumor tissue. Based on that number I fell easily into the "no chemo" range. I think the Oncotype score surprised both her and my surgeon a bit as they both predicted it was going to be a very low number. I struggled with it but ultimately decided to pass on chemo and my MO said she would have made the same choice. I am dealing with lots of side effects from hormone therapy (aromatase inhibitor), but determined to push through and finish it since that's my main weapon now.
My stats aren't exactly the same as yours, but IF my Oncotype number had been higher in the middle range, if margins had been an issue, and if my MO recommended chemo I would definitely have done it. It's a tough decision that only you can make. It sucks!
Best wishes...
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Welcome Jennifer - Dang girl - that really sucks. In the old day they would have said no chemo for anything under 1 cm. You could consider yet another opinion on the grade. Johns Hopkins pathology does them. You can check it out online. If it came back a grade 3 it would kind of confirm the oncotype. I think a lot of pathologist opt for grade 2 cause it is the safest bet. There is a graph about this on the professional section of the onctoypedx website. It compares grade calls for local pathologists vs those at biggest institutions. Good for you for getting the 3D mammo. I was 51 too. Stage 1a, but 1.1 cm.
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Hi, I am new to this and this site & am so scared. I was dx with invasive ductal carcinoma 1.6cm, Grade 2, Stage 1A, tumor size C & no lymph nodes involved. I am going to MD Anderson next week for a 2nd opinion. Do most people have radiation & chemo? A lumpectomy was mentioned at my first consult. I wake up with this on my mind & go to sleep with it on my mind. So scary!!
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MiMi11, I so understand you being scared and am glad you have came to BCO to get help. MDA is a wonderful place, especially to get a second opinion, so you are making a smart decision. Please don't give up on these threads. Someone much more knowledgeable than I will jump on here and help with your questions. Stay with us!!!!
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Mimi--sorry you have to go thru this. Everything I am about to say to you is based on my experience-everyone is not the same. I had a mammogram that showed a mass less than a cm. The ultrasound confirmed it, and the cone biopsy showed it was malignant. I met with a surgeon, a medical oncologist and a radiation oncologist prior to my surgery. All of them confirmed that from their reviews, I was a strong candidate for lumpectomy. I had lumpectomy with a sentinel node biopsy . the biopsy confirmed that there was no cancer in the lymph glands and I was Stage 1, grade 1, with ERpositive, PR posive and HER negative. The Medical onc ordered an OncotypeDX test on the tumor tissue. Its usually done on small tumors. Ask to see if they will order this for you. My score came back as 8, which was low enough I could skip chemo--which I very gratefully did. I did radiation, which I completed on the 20th of May, and now will be beginning a pill (Arimidex) for the next 5-10 years.
The only question I had for my MO when he was done explaining everything to me (about 1.5-2 hours later was----If I keep my breast will I ever stop thinking I have cancer? He said it takes at least a year for women to push it back in their minds and believe they are a survivor. I remember well how I did the same thing you are doing, first thought in the a.m., last thought at night, even had nightmares about it. I still struggle with it. almost every day but I am only 5 months into the year he said it would take.. That being said, I don't think I would have had any regrets had I taken the breast off. I have seen some of the pics the ladies here have posted after reconstruction, and I am amazed, absolutely amazed at their results. But I don't think that having a flat chest again would be that bad either--I am decidedly single, alone, and satisfied with my life that way. I understand most others might have very different feelings about this.
My cancer center gave me a book titled BREAST CANCER TREATMENT HANDBOOK by Judy C. Kneece, RN, OCN. In the back of the book are tear-out pages with questions to ask of each of your specialists. Mine pretty much covered them all with their "orientation" consultation. She also wrote one for your Support Partner in Breast cancer.
There are excellent resources here on this website, in addition to the discussion boards. I made myself a pink ring binder (God Ihate that color) with all my stuff divided by doctor type, treatment type, etc. based on the recommendations here on this website. It saved me to have everything organized where I could go back and find/re-read test results, etc.
You will find a very caring bunch of women here who are eager to help you succeed in your fight against this disease. Just remember, you are in charge, you make the final decisions, etc. Good Luck, Godspeed, and don't be a stranger.
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MiMi11 this may sound like a really dumb question but if you live in SC why are you coming all the way to Houston to go to MD Anderson? I live west of the medical center in the "burb" of Katy.........it all runs together. I was thinking of recommending my onco if you are interested. I have heard good & bad about MDA. Personally I never wanted to get tangled up in a teaching hospital. If you are interested let me know & I will be glad to provide you with my onco info. He is one of the best around. My DH was already a pt. and when my journey began I knew exactly where I wanted to go. He also did the OncotypeDX on me. Make sure your insurance will cover it as it is rather expensive.
I do understand the fear you are feeling and there is probably not a single woman on here that hasn't felt the same emotions.
This morning I was at the very same onco office and everyone was reminding me how far I had come & how long this journey has been. In the beginning I went kicking and screaming all the way! :-) I did not have rads with clear sentinel nodes and 3 lymph nodes clear.
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thank you Mema
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thanks for all the great information Redheaded1. I am also single & have a very supportive man in my life. I have the same dx as yours so far. I am ER+ & PR+ & HER -. The oncologist that I did see already mentioned having the Oncotype test after the tumor has been removed. I have my appt. Monday morning @ 0700. I am anxious & nervous but want this tumor out of me. Thank you for sharing your experience with me. I was told originally that I would have radiation for 6 wks. What was that like? They wouldn't know about chemo until the pathology reports came back on the tumor. I am very afraid of chemo. My dad had lung cancer & I so remember how it affected him
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Hi Norma Jean, thank you for your response. I checked the web for the best cancer centers in the US & MD Anderson was in the top 5. My family is closer to that area also verses where I currently live so if I need much help they would be closer to me. I have never heard anything negative about MD Anderson & have a cousin that is a patient there. My insurance even had them listed verses where I originally went for a consult that wasn't on their list. I am already set up with someone there & just waiting to get my 2nd opinion & get this thing out of me. I have good positive days & then I break, but I am trying to stay positive & strong.
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MIMI- my experience with radiation was mostly positive. I met with the RO for about 1.5 hours prior to my surgery. She did a very thorough history and I mentioned to her that while I didn't have connective tissue disease, I did have an elevated ANA TITER test every time it had been done. She decided then that I would not receive "boosts". Boosts are treatments that specifically target the tumor bed and usually come at the end of treatment. I then waited until my surgeon said I was ok (3-6 weeks from surgery depending on healing) and I went for my simulation. HInt- if your surgeon gives you exercises post surgery do them, because you have to hold your arm up and back for simulation and for each rads treatment. At the simulation, they work on getting you positioned just right, take non-contrast CT scans, etc. nothing invasive, but your arm is kept in an somewhat uncomfortable position for anywhere from 45 minutes to I'd guess about an hour. You have to lay still while all this takes place and not move your arm. My surgeon didn't give me any exercises and my arm and hand went numb. The RO gave me some to go home and start doing. Then, they develop a plan on how point the radiation at your breast, build you a little "mold" to put your arm into each time you go, and if they are going to tattoo you (it does NOT hurt) they do that--otherwise you get stickers that you have to not let come off and black markers. Some get a combination of tattoos and stickers. I was told to not face the shower and if they came off, to come right to the clinic to get them reattached, not to put them back on (they are key to your treatment being lined up properly). Nurse went over the lotions and potions you can use and not use,when you can se them, soap, deodorant, etc.About 10days later, I was called to come in for my "verification" and first treatment.
It actually takes longer to undress and get positioned than it did for treatment to be delivered. I went for 28 treatments. M-F.at 1pm Each week they will take x-rays to verify that they are hitting where they need to be. That takes a little longer on the table. In my case, each day I would be red and warm when I left, but by morning, it was gone. I am busty, and the area under my breast burned and became irritated by 3rd week. It is very important that this area be kept dry when you go for your treatment. I think, in hindsight that my lotion probably ran down and collected there, and I was damp when I got zapped. (This is why they will tell you not to apply your crème within 4 hours of treatment time. ) On my third from the last treatment I got very red and stayed red. I am still itchy (last treatment May 20) but I am just a little pink now.
Important thing is to ALWAYS ask any question or concern. You shouldn't be worrying or wondering about anything. The nurses are all helpful and caring and you will most likely see your RO once a week for skin checks. If you don't like a cream they suggest, tell them, or if you itch or burn, tell them. I found it much easier than I imagined. I did learn from women on this site to get some cotton wife beater mens t-shirts at Target and wear them Underneath a cotton sports bra one to two sizes bigger than usual. I am still in my T-shirts---they are so comfortable. I made the mistake of going to an expensive bra shop and getting fitted for a cotton bra---clearly, they knew nothing about radiation treatments. If I shrink down to that size, again, it will be nice, but if not OUCH! (your breasts can swell during treatment-hence the bigger size bra-also you don't want anything tight underneath your breasts, cause that area is tender)
I used a prescription crème called X-Clair most of the time, but also used Calendula crème from the Natural Foods store and Aquaphor and Cetaphil at the end and post rads. I used 99% pure aloe vera gel when I felt hot and I used Benedry and Hyrdocortisone crème for itching---All approved in advance by the RO.
Disclaimer: Everything above is based on my personal experience, everyone is different and may have very different experiences than mine. I am just happy to share what I have experienced so others might benefit in some way. I don't want the self-appointed cyber-police to come calling
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Hi I am scheduled for surgery this Thursday and wondered if anyone here chose not to do the SNL as part of their surgery. I really have a small area less than 2 cm and the MRI showed no areas of concern. I have already decided not to do the rad and chemo ... so would having the SNL be even necessary. Thank you very much
Editing here...was trying to abbreviate instead of typing it all out but here it goes so I do not confuse no one...Sentinel Lymph Node Biopsy...Thanks Mema4
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Is that the Sentinel Lymph Node you're talking about? I'll go look up that acronym!
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Yes mema4
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My mistake guess I was channeling Saturday Night Live
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Mema and Grandma! Gotta love us. I didn't even think about not doing it. Sure makes it sore but I felt better having it done. I bet you're gonna have a lot of other women chime in here!
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Thanks mema4...My diagnosis was giving to me on May 22, 2014 and have had very little time to know what is and isn't really NECESSARY! I know what the procedure does but regardless of a negative or positive result I still do not want rad or chemo...so that being said should I really have that procedure that may or may not have repercussions.
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Redheaded thanks so much for your experience. I had not thought about my boobs getting swollen & larger. Was the sports bra the kind you slip over your head or does it fasten in the front?
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Gorgeous Grandma...don't bother, you made up your mind.....I didn't do Chemo or Rad's either.........
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BosumBlues...It was a personal choice, all types of Cancer runs in my family, many family members have died from it. I've seen what chemo has done to them and has not done for them. I just didn't want to go through with it. I'm 52 now and if BC returns I'll deal with it then.
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Thank you so much BosumBlues and Loral for your replies. I just didn't want a procedure that is for exploratory purposes only. Results wouldn't change my mind...Thank you ladies
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Loral, I love what you said. I am so conflicted about this hormonal therapy and everyone that sees me on every thread can vouch for that! But even though I've started it, the conflict is still there and nothing I've read eases my mind. How did you decide to go on it?
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MIMI11- I had both kinds of sports bra's, but my favorite one had hooks and eyes in front.
Gorgeous-may I ask why don't you want to be treated for your cancer? If you feel you are rushed, make them put off the surgery till you are ready. You need to research and reflect on this decision. Its a great big one.
I was really scared---then I realized I was more scared of the unknown than the known, so I opted to do SLN and Oncotype before I made any other decisions. Those two bits of info were life changing in terms of the fear I felt. I just took it one day at a time, knowing I could stop whenever I felt like it. Now I'm down to starting my Arimidex tomorrow morning. None of it was nearly as bad as I imagined. I am a great big medical procedure weenie.
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Thank you for your concern Redheaded1, I am being treated I just choose a different path than the one others have made. I have researched and studied and am very confident in my decision. There are many different ways to treat cancer. I appreciate your advise. I am not making my decisions based on fear but from a position of knowing my treatment path. I wanted the surgery as quickly as possible because my first step was getting the tumor out. What I have decided to do after that is just a different path to treating this cancer. Everyone has to do what is right for them and I know I am doing what is right for me. Again thank you my sister
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Gorgeous--one of my rules is to always do what you think is right---otherwise you will kick yourself if you later regret a decision contrary to your instincts.So, you are doing what you believe is best for you. Kudos for that. All my best to you!
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GorgeousGrandma (btw love love the name and why didn't I think of it?!?!)
Anyhow, what each of us choose is a personal decision and we all have our reasons. I knew for me that I couldn't have slept if I had not known whether or not nodes were affected. I also wanted to know my oncotype score. You are doing what you feel is right for you and your family. That's all that matters at the end of the day.
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Thank you Redheaded1 and Sunshineinky and have a wonderful week my sisters. Blessing to all of my sisters in this fight
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Gorgeous Grandma--I think tomorrow was your surgery date, if I understood. Good luck, and know that we are all there in your pockets or else our "angels" will be hanging with yours to make sure things go great.0 -
Gorgeous Grandma,...I wish you well. Take care and let us know how everything went with your surgery...
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Good luck Gorgeous! We will be watching for updates!0
