Starting Chemo September 2015; join us!
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Hi tessu. It has been a long time. I have been thinking of the same thing - radiation first then reconstruction. I don't think I'll get much traction as both my MO (yes, the same one who as made this journey hell) and my BS think it is overkill just doing the bilateral mastectomy. I can't trust mammogram- they didn't see the layered crud that had to have been there for years. The RO said I would not need radiation if I had the surgery- to be determined after pathology looks at the tissue. I learned my lesson- wait for the pathology report. While I am her2-, I have er+, pr- stage 2, grade 2- why are you at such a high risk, if I may ask? On a more personal note, I am having a rough time. My boyfriend of 3 years said we were ok. Well, he stopped communication after I bought him a toaster for Christmas. Was jumpy about me stopping by. You guessed it. Had a new girlfriend and didn't have the guts to tell me we were done. Men!0 -
grey I'm at high risk because of gr 3, very high KI67 (80%), and rather long delay between biopsy and surgery/chemo. Maybe also because of the larger gr 3 DCIS area right next to the cancer?
Very sorry to hear about your ex bf
Poop on himEDIT: I went back and read through my pathology report -- sorry, I remembered the KI 67 wrong, "only" 80%, not 90% as I remembered, but still very high.
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tessu- I never thought I'd find another ER+ with a crazy high ki67 score like mine (78%). girl, I don't want to hear that nonsense about when the mets come. Is your MO God? That makes me angry. Triple-negative patients have extremely high ki67 scores and only 30% of their cancer has returned within five years. So it's bad, but not a definite.
I also kind of want to punch some of your doctors. I email my MO. and study nurse all the time sometimes multiple times in a day and they always get right back to me. That is crap Health Care to be so dismissive of symptoms and issues that people have during cancer treatment and it makes me really angry.
Grey, just keep hanging in there sister. Brighter days are ahead! Praying for you sweetie!
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HI,
I also tend to just read posts lately. But it is RIDICULOUS the amount of fighting and pressuring some have to do with their doctors! So frustrating. We have had to fire people and fight with our own parents about it. They live in a different world where they trust everything their doctor tells them, not anymore, not these days. It's not just cancer we fight but the medical field and insurance as well
It makes us stronger though and take into account what is really important, some days I find it hard to see that silver lining.
Fight on!
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Hi there. Tessu: I am sorry that you have physicians who are so negative. Even at my lowest, I knew it is not up to a doctor to make such predictions. I understand how you feel though. My cancer was a sandwich of bad stuff- idc on top of dcis, on top of lcis. I admit I don't understand how they figure these things out. They only consider the idc here when they look at the tumor but they took out the dcis which was larger than the idc! The lcis - no one knows how large that is. My dcis is grade 2 but I don't have the ki67 level. All I have is a mitotic rate of 1. It doesn't give me enough information. I was told my prognosis is only 2 years if I get a metastasis. But as we see here on the discussion board, there are women who have been alive for up to 25 years with mets. And the research is only making things better. So I am torn. I don't want to know if I am stage IV but think I should know. My body just won't let me do the Pet Scan.El Tigre- the funny thing is that when I fired my MO and we had time apart, our "team approach" got better. We can actually compromise on both sides now and it was really bad during treatment. I hated him and freely told him that. He found me "challenging". I found a great MO but she was part of a health system that couldn't take my insurance. So we never really got going. So many opinions. I am now checking into radiation before surgery. Overkill?
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Has anyone requested Mammaprint or molecular subtyping? That will give you more info about risk. My Mammaprint came back high risk and then luminal B (also high risk). So I know what I'm facing. In my heart, I always knew. But in the end, numbers don't matter. God has known the number of my days since the beginning so stats are just that and they don't matter until it's you - whether you are the 1% minority or the 89% majority.
Grey, I've never heard of rads before surgery. I was told I had to wait a MINIMUM of 6 mos after rads to swap my TE because of all the tissue changes. My plastic surgeon wants 8 months. I'm waiting almost a year until my paid leave rolls over again. Is it different with a BMX or lumpectomy?
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UGH, sitting on a rising fever... 99.8, 100.8. One more and I'm calling the doctor. Queasy all day but SO do not want to go back to the hospital!
ETA, I had to leave work early I was so ill despite having no more paid leave. My husband is supposed to be at an awards banquet, leaving tonight, and now he can't go. I'm supposed to have dental work tomorrow to start the Prolia, but that seems unlikely now. Grrrrrr.
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I'm sorry that you are ill, cajunqueen. I hope you feel better. I was hospitalized 4 times because my temp was above 100.4. It was don't stop at go, don't win 200 dollars - just 4-5 days with IV fluid. How do you know if you are Luminal B? I thought Luminal B was ER/PR positive and Her2+. I hope you can get some rest. Are you doing chemo?
I have already had a lumpectomy with one node that had a micromet out of seven so that I may need rads to take the risk out of my breast. I am just confused about what needs to be done. Too many opinions. Some doctors tell me to have my ovaries removed, some think it is unnecessary. Some say just do the rads, some say BMX. I get tired just think about it.
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Hi ladies
I don't know what to say to any of you but big big hugs. I have turned into a bit of a B**&(*&-e r I am sending super big hugs to all of you. I have a brain scan next tuesday please send positive energy and prayers if you do that thing. Also have an EMG for my hands.
I don't want to give advice about radiation, Mastectomies, Arimidex, Tamoxifen, hysterectomies you name it because I have been through those choices and I felt like I was eating in a restaurant where I hated everything on the menu. I have seen some beautiful photos of women who had dbl mastectomies and waited and then had reconstruction. I also would have probably had the tummy tuck Mastectomy ( I think its called DIEP) but I would have had to fly 4 states a way to do that and I just wasn't in that kind of position at the time even though my insurance would have paid for it. I do know some women here who had dbl mastectomies and radiation and then had reconstruction surgery later and they seem to think it was a good plan.
I do appreciate hearing from you gals. I am trying to not post too much because truly I am normally an optimistic person but right now I am trying to stay out of the dark place where thoughts scare the crap out of me. I did drag everyone hiking& Camping this weekend and that was a lot of fun. It felt nice to be doing something normal again.
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HI everyone,
It's been a while since I've checked in here. It's great to see all the people who started this journey with me doing so well.
It's been a crazy road - TCHP chemo, bilateral mastectomy and radiation. I'm still doing Herceptin - which ends in October - and taking tamoxifen.
Grey - it's great to see you here! I understand where you're coming from in not trusting mammograms. I felt the same way. My BS was very against me doing BMX, but I did it anyway. I went and got a second opinion and was told that due to my family history they definitely recommended I do BMX - so I did. I don't regret it for a minute.
That said, I also have an unusual diagnosis (an occult primary breast cancer) and cancer was found in two nodes, so I was ready to be aggressive in my treatment.
All that said - I now need to learn more about how we go about monitoring post treatment. Can I request scans? I haven't had one since I was diagnosed. I'm still going for regular MO appointments every 6 weeks so I'm assuming I can ask to have one after a particular amount of time has passed? What have your doctors told you about monitoring after treatment?
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Edwsmom- we are a lot alike! I too am stage IIB - I think- I have to have another Pet Scan to confirm it but I was that before chemo. 1 micromet out of 7 SN taken. Do you have a survivorship clinic? They can tell you the next steps and work on things like nutrition, work issues, family dynamics going forward...
So far I have found out from RO that they don't do rads before surgery, unless your cancer is very aggressive. They don't think I'll need rads after surgery. But they can't be sure until after the surgery and pathology. I did get through 4 DD AC and 4 weekly Taxols. Had anyone had the DIEP in our group? Someone said I would be sleeping a lot for the week. Great! I can't get any sleep now. Just have to get the doctors to look at their schedules. Has anyone dealt with neuropathy in their feet? I keep falling down. Fell down a flight of stairs at the mall. Wig came off. Ambulance called. How embarrassing!
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I didnt have enough fat for DIEP, but I'm going to try to get my PS to code something like a fat graft from my tummy for the insurance to cover removal of my twin skin which is horrible. I would not have done DIEP or tram because of the recovery time with 3 littles, but I toally get the appeal!! There hould be an upside to this nonsense, right?
Grey, you got through a lot of chemo. That is good news!!
I'm on the zpack and feeling better. All 5 of us caught the stomach bug, Yuck.
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edwsmom, my onc says no scans unless symptoms come up. Otherwise it's just mammo and check ups. After what we have been thru it's hard to feel like this is adequate. My clinic has a new survivorship program. I will see NP for that September. I'm not sure how that coordinates with BS and MO appt.
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I feel defeated because I wanted to complete the 12 weeks of taxol. My MO said that studies have shown that taxol's benefits were much smaller than its problems it could cause. I got neutropenia and anemia from taxol. But I really wanted to complete chemo
I'm glad you are feeling better, Cajunqueen. I still have extreme nausea. During this year, because of the stress of BC, I lost 90 pounds at minimum. I have gained some weight back to get up to 140. I started ar 230 pounds. That is probably why I got the breast cancer.
I am going to make an appointment for the survivorship clinic as soon as I recover from my surgery.
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Twiggy, is the program at CHH? We have not asked about scans yet. I see the MO in early July. I know a bone density scan is in my near future to see how my bones are doing. After speaking to a few other cancer survivors and one sister of one we will be asking about scanning my head as well on the first follow up scan. Scary as hell but i guess it must be done sometime
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Grey We are always harder on ourselves than on others. I feel bad that I couldn't handle arimidex but changed to Tamoxifen. Everything I have read about Chemo says that you did PLENTY!!! Also I think that is amazing that you lost weight. For a sh!#$ reason but it still counts. I gained weight on Chemo and now after hyster I am still packing it on. I am trying everything I can. I need to get some survivor support. Maybe you could get some support from a diet group. I mean you already lost weight that would give you some friendship and the support to keep the weight off. Maybe I need to follow my own advice...lol
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Hi everybody!
Nice to see so many of you still posting here. I try to check in once in a while but haven't had much to say. Still trying to figure out my new normal and wondering when some of the lingering SEs (runny eyes, mild neuropathy) will go away. At least I hope they will go away! I've been finished with all the treatments since final zap March 28. Now taking letrozole (femara) once a day which seems more or less OK so far. I do feel achy but then I felt achy before all this anyway.
edwsmom, the "wrap-up report" I was given during my follow-up with the RO says that a bunch of tests are not recommended for routine breast cancer follow up, including MRI, PET scan, chest x-ray, complete blood cell counts and more. I find that a bit odd. How are we supposed to monitor this? I'm scheduled for a mammogram next week, exactly one year after my diagnosis, but I think they just look at the other side. Guess I'll find out next week.
Meanwhile, just trying to keep on keeping on...
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Luzeelu- It is nice to see that there is an ending to this breast cancer thing. I would like to see the ending to this long, drawn out book. I have yet to go through rads or do a bilateral mastectomy so I am still waiting. My MO, unfortunately, is in love with Pet Scans. I hate them and they set me off. I get so upset my blood pressure goes sky high so I can't do it. I could have a stroke. How was rads?0 -
El Tigre,
Yes, the survivorship program is at CHH. At my post rads appt Dr Kubicky said it was a fairly new program and gave me a referral. The NPs name is Amy Leatherwood. On the OHSU website she is listed under prostate survivorship😀 so I'm guessing they haven't updated the website yet. My appt is in early September.
I asked about followup scans a long time ago. That's when they said only if symptoms present. I've been having some numbness and was a complete wreck at my last MO appt so I'm getting full body bone scan and torso CT next week. MO said her concern was low but better to check it out.
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grey, it's not why you got breast cancer. you got breast cancer because you have breasts.
i'm 5 feet 10 inches and was 142 lbs (post partum weight) and about 138 prior to pregnancy now down to 127. and I still got it. although i have tried to implement some healthy changes and sure, there are risk factors, there is often no rhyme or reason. one of my best friends was diagnosed shortly after running a marathon at 25 and has never smoked or been drunk a day in her life. 6 years later, she was diagnosed again. we ran a half marathon together a few years back. she was the healthiest person i knew then and now.also, Taxol was AWFUL to me. i fought hard to finish but it was a knock down, drag out fight. i was severely neutropenic the whole time, allergic to the point that they stopped the infusions multiple times, frequently house bound, and had to use fentanyl patches to kill the bone crushing pain in my legs. i was also anxious and agitated and spent days restlessly pacing around my room, isolated so as not to scare my young children. i thought i was losing my marbles. and then the neuropathy, egad! that drug can do a real number on you and LOTS of people are unable to finish, do not feel bad about that. it's poison! your body is meant to reject it! ETA, I'm in no way suggesting you needed to try harder. one more allergic reaction and I would have had to quit Taxol as well.
as far as follow up, i am excessively followed on the clinical trial with weekly check ins and monthly visits with full lab work and metabolic panels and i like it. my doctor does tumor markers every six months, not so much to detect breast cancer recurrence, I've deduced, but to check for cancers stemming from chemo. i know they aren't reliable but i do know somebody who was diagnosed stage 4 from tumor markers prior to being symptomatic and she is 2 years in and the cancer is still receding. so they do have some use, just not sure how much.
i have done more to try to spread God's love since finishing treatment than I did in years prior. i truly see an upside to this all even though there is so much that is hard. somebody at work stopped by today to tell me her niece is in her 30s with young kids and starting chemo for BC. she's had to move back home with her mom. i gave her all her all my contact info and encouraged her to reach out to me.
we stand together, ladies! wishing you all the peace that surpasses understanding tonight.
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I started seeing a Stage IV friend's naturopathic Doctor (from a support group). I didn't have MO and I wasn't sure about my next step. I found out that my weight during chemo dropped to 110 pounds. I lost 120 pounds from my diagnosis until then. I am 5'8" and I have big black women's hips. Too bad I never got to have a baby. More regret. I never gave my mom a grandchild. My naturopathic Doctor wants me to get my weight back down to 110 pounds. Fat equals estrogen is what she says. She gave me this powder to take in my food or drink. The problem is that it makes me so ill I vomit until I can't breathe. I tend to skip the dose because once I take it, I can't stop vomiting and end up,on the bathroom floor. It is as bad as my days in chemo. And so far, it hasn't worked. Now the naturopath wants me to only eat on Monday and Wednesday. At first, she said 120 now 110. I am happy that you are in sync with God. I, on the other hand, have issues with BC, women, and other things. I don't trust anyone or anything. Too bad for rides. Trying to find a job.... Going to bed. ZZZ
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Twiggy, HA! that's my RO too.
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It has been a little while since I stopped by, Glad to see everyone is doing ok.
Canjun- I start the Everolimus 5mg tomorrow. I was suppose to start this morning and nurse said I had to eat a light breakfast and drink a glass of water with them and my district director was here this morning by 9 and I just thought about the meds. So I guess I will start tomorrow. I am a little anxious about the medicine?? Are you doing Ok with it?? I am fighting with myself google dont google!!!! Anyways I am glad that someone else has heard of it and is using it so we can compare notes.....
El Tigre How are you feeling? Have not talked to you in a while.
Anyone else having a lot of knee pain??? I started riding again and my knee are really hurting. I told my MO about it and he said maybe I needed to consider PT. He said it want chemo related but I never had problems with my knees b4...
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Tkemp - Good, still have some joint pain, acupuncture and a few other things I'm doing has helped but it has not disappeared, yet. Mine started half way through radiation. I hope Everolimus goes smoothly for you, good thoughts! PT might help and/or stretching. Some say supplements do help. I'd check to see which ones they recommend for you.
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Cajun when you have a second pm me about the trial. Is this something that my criteria even fits?
OK I feel very self absorbed in shouting this from the roof but my brain is normal. Finished at 2:30 and they called me at 4pm. Now I can try some things to figure out why I have a headache all the time. But relief relief relief.
Ktemp: As for joint aches. Yes they doth sucketh especially on AI. I am starting to think I may have to backtrack and go to the water aerobics and the silver sneakers workouts ( even though I am 42) I need to build up what I have lost. I think a lot of it is the AI but there is a lot of atrophy from Chemo. On tamoxifen my joints have gotten much better but my knee starts to bum out after a few miles. For me I have decided to move down my expectations and train slowly. Also I am on Herceptin and I have just decided not to pursue interval training until After I am off of it.
Good to hear from everyone. I am wondering about Minnesota. Anyone want to post update hair pics? I will try to get a shot later. I think it is finally starting to look like I meant to have this haircut. Not my favorite but I ditched the hats and wigs. It flips and curls in the back and actually looks like I curled it that way.
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Yeah lets!
I get my hair trimmed tomorrow so this is the wild "before"
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Just got home from having it colored and trimmed ever so slightly...
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grey good to hear from you!
ElTigre and twiggyOR you both look adorable.
As for me I am doing ok. I wish I was able to do further treatment to prevent reoccurrence but as a triple neg chemo was my one shot.
Yesterday I went to a cancer survivorship celebration at my hospital. They have one yearly and it provides workshops and research info, plus teaches survivors about yoga, eating well, and stress reduction. They even had a workshop on mindfulness. I attended 2 of the workshops on stress reduction and on mindfulness. Both really good.
I feel pretty well, I have lost 55 lbs in total and went from a size 16 to a 6. I worked hard at the gym, am diligent to get my 10,000 steps in a day on my Fitbit, and make sure I keep to under 1150 calories a day. I eat a mostly plant based diet with chicken and fish. I try to avoid processed sugars, and watch my carbs.
I still worry about every ache and pain and my mind goes right to thinking I have stage 4 Mets, but I gotta keep these stressful thoughts out of my head. I am learning to live in the moment and let go of caring so much about dumb crap. I find I have more patience but less tolerance for some things. I am more appreciative and take more time to be good to myself and others.
As for hair pics I just posted a few on the hair board, but here is me yesterday just before I went to my hospitals survivorship celebration. Happy Thurday ladies. I just realized today I am officially 6 months pfc.
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This is my crazy hair at 4 months, 2 weeks pfc:
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exercise, I am SO HAPPY your brain imaging showed no mets!!! Yes, that's definitely worth shouting from the rooftops!!!
I too have to fight my mind from saying any unusual ache or pain or other abnormality is stage 4 mets. But I am grateful to have reached a point at which cancer isn't always on my mind, like it still was several months ago. I did finally call the clinic to ask about my three-week-long headache, but because I have not lost vision or had a seizure, I was told by the nurses to still "follow it" and "maybe mention it" the next meeting with the doctor --- almost three weeks from now. Same with the diarrhea. Well, at least I've got meds for them.
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