2017 Diagnosed-- A Place To Share "Whats Next"
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Wow, TaRenee!! How beautful!! We've been to the Outer Banks but were never lucky enough to see something so beautiful!!
I do miss my long hair. I loved pulling it back in a pony tail when we rode the motorcycle. I haven't been on the bike since my diagnosis. I was too unsteady during chemo. But we plan some rides this year. We bought a convertible last year so we could still ride together and feel the wind in our faces. But I do like the ease of my short hair. It's so easy to get ready in the morning for work. I do love that!
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Hi, everyone. Just dropping in to catch up and see everyone's posts. I haven't been online much because we have been away so much; we attended three funerals last week alone. Two were in their 90s, but one was only 66 and died from long term complications after cancer surgery last year. So sad; only two years older than I. I saw my oncologist last week, and she ordered blood work to check tumour markers; the two are down but one is still slightly elevated, so she will repeat the blood work in two months.
pink_is_my_colour, I really don't understand the tumour markers and it is hard to find good information about them. A lot of doctors don't even check for them, but my oncologist does, and doesn't like to see them in the abnormal range. At the end of April the C15-3 was at 30 (should be 25 and under) and the CEA was at 4.3 (should be under 5). On June 18th, C15-3 was down to 27 so only two points "above normal" and the CEA was down to 41, but both are still higher than end of January. Cancer is not the only thing that can make them rise, and apparently some people with cancer don't always get a reading. It is SO confusing. The literature says that using them on someone with early stage cancer (I was Stage 1) will not be an indicator for recurrence and isn't recommended as a screening tool, but the oncologist says "but it was Grade 3". She said that if they were up, she will order further tests. The only thing left would be a PET scan. When I said my surgeon said I would never be considered for a PET scan unless I was Stage IV, my oncologist said "if I want you to have a PET scan, you WILL have it". My nursing friends in Winnipeg tell me that that is very true. She gets what she wants, and they feel I have the best oncologist available in Manitoba, so I consider myself fortunate. It is all very confusing but, but she says I am clear of cancer at this point, I refuse to worry about it.
DodgersGirl, how goes the battle. Read your post about your hair. Hope you enjoy the new style and that it comes in beautifully.
TaRenee, love the horses; they are magnificent animals.
I am feeling great though. Am enjoying the flowers and pottering around the house; today is a rainy one, so I feel like rearranging furniture. Don't know how hubby will feel about that! I am starting to feel like my old self again. Have a great week, all of you, and wishing you all the best.
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53Nancy- my MO doesn't check tumor markers just regular blood tests. She said in her experience the tumor markers aren't reliable. Personally, I like the attitude of your doctor. Grade 3 TN.... glad she is watching things for you. I know the anxiety of having blood tests every couple of months can be stressful. Hoping you will continue to feel better and better, regaining your “self" from before dx. Love reading the good news as your energy and such improves!
Hair- I am now to a point where I have to decide if I am going to keep short hair. If so, I will need to schedule my first haircut since chemo. If I am going to grow it out, I need to style it differently that just let it do what it wants!
My next visit to MO is Wednesday.
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DodgersGirl: Yes, growing out the hair can be a real challenge. If I can find a decent shorter hair style I think I'll go with that. I remember the days of trying to grow out shorter hair styles. But that was back in the days when my hair grew fast. Now, it would be too frustrating.
Nancy: Thanks for the info. I didn't realize there were such things as tumour markers. And you're right not to worry about it really, because worrying won't change anything. It is what it is. That's how I look at it. My oncologist said that breast cancer is the only one they can't really predict when, where, or who will get it back. I'm leaning towards "not getting it back". Glad your energy is back. It does feel good doesn't it to be able to get back to doing things we love.
TaRenee: Gorgeous horses.
Oceanbum: Ditto!!!
For those of you lurking, drop in and say hi.
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Iron Transfusion today was pretty easy. Hopefully my numbers come back up and I don’t need to do it again. The nurse said sometimes it’s twice a year, depending on what is causing the low numbers. I looked at my test results, and the magnesium was good but iron and potassium were low. Iron was about 10 below the threshold so that was why the infusions. I go back to my MO on July 11 and will see what he says are the next steps. I’m just happy to be able to stay awake past 7:30pm without taking a nap during the day
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oh that is a beautiful sight! I love the east coast so much! Thanks so much for sharing
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saw my MO today for regular check up. Blood tests were all good. I am being extended out to every 3 months now. I can see where MO visits being further and further out will help feel life normal life is returning.
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Good to hear Dodgers girl. You have been through a lot!
I had my 12 month lung CT to watch a couple lung nodules. I thought I only had two but seems I had at least 3 however the report notes they r stable. T G. However a new area of ground glass is noted on my radiated side which I just finished mid feb. I'm hoping it is due to radiation and I see my oncologist Friday. Anyone else have similar experience or info?
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Tpralph—. Hoping new findings in the lungs are due to radiation. Sounds very likely. Hoping for only good news for you on Friday
Stable is a great word. Happy for you on the 3 nodules that are stable!!!
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Thanks Dodgers girl me too 😑
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I haven't been on in awhile. I also saw my MO and go back in 3 months and 6 months for the breast surgeon. Next week I have schedule dr appointments that I didn't get to last year the dermatologist and gynocologist. As far as hair I like mine short but not sure of color. I colored it golden blond before cancer now it is gray, a pretty gray. Everyone, including my hair dresser says don’t touch the color. I am 51 and I feel like it makes me look old.
Ta’Renee the horses are beautiful. I got back from camping a couple days ago and it was exactly what was needed to heal. I feel ready to put this all in the past.
My doctor does tumor markers when ever I go in. I have watched them slowly fall lower and lower. Liver enzyme test was high at my primary doctor during pre surgery blood work. Asked my MO and she said not to worry and if they send me for tests to call her. I go for a follow up at primary next week. MO told me she takes care of that. Hope everyone is well. I need to go back and read posts.0 -
I cut and colored my hair 6 months after chemo. It looks much better when you cut off what my stylist calls baby bird hair! Once that was gone it was less feathery and held the color. My stylist says she won't bleach it for awhile but color seems to be fine. I'm not a short hair fan but hoping I can get back to a short bob. Growing it out is a pain. My DIEP is a week from Friday, sort of an snxious mess right now
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Tpralph, I hope the findings in your lungs will end up being nothing to worry about, but of course we all worry until we know. My scan a month ago showed I had "fibrotic changes, possibly due to radiation therapy", so now I want to do some reading to understand about nodules. I wonder, could you define "ground glass" for me? I am glad to see you are in Ontario; in my opinion, the best health care available in Canada.
DodgersGirl, hoping you are doing okay and wishing you the best.
Best wishes as well to Ambee. My C15-3 was down from 30 in April to 27 last week, and CEA is down too, though my oncologist wants them even lower.
OCDAmy, not sure what DIEP is, but am keeping you in my thoughts and prayers, and hope it all works out well.
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After five surgeries for reconstruction for double mastectomy and one year beyond I am just not recovered emotionally. I am taking aromatase inhibitors and the side effects are bringing me down. I can't feel my chest so half my upper torso feels like hard lumps on my body, and I just feel so grateful for all those that helped me "look" better but so darn guilty that I haven't bonded with my new breasts. My energy is just depleted. I go to work and come home and am exhausted. No more gym and working out. Just don't have the zip to get there. Honestly I feel guilty even writing this stuff down because I survived the hard part right? I should be feeling like i am on the other side and feeling joy again. My family, so beautifully supportive during my 15 months of treatment just wants our old life to carry on as if this never happened. I am hurting inside but try to carry on a happy face for everyone else. No one asks how I am feeling bc they want the whole thing to be over. But for me I am just waiting for the other ball to drop with a reoccurrence. Anyone relate?
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maxiemama yes I can relate. I have been having a hard time moving past all of this for months. When I was put on a letrozole vacation for most of the month of May. I felt great minus ankle tendinitis. Then having to move my exchange surgery up and change of vacation plans upset me too. Now that the exchange is done and I took a quiet vacation with my husband I am much better. I have also started a new AI and I think that this has been the key to feeling better. Letrozole left me in a fog along with joint pain. I don't have that on this one and it has made a huge difference. I also worry about a recurrence. I just had labs done and everything is good. A bone scan in March. I go back in 3 months, so I am cancer free. I really think the letrozole put me in a funk. I could actually feel the fog lift slowly away in May. You are not alone.
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Wow Maxiemama! Five surgeries, yikes, plus whatever else has been going on in your life. No wonder you're not up to your usual self. It takes time. I didn't have five surgeries and I'm still trying to recuperate after one year. Each of us deals with our emotions differently. I still have days when I cry for what seems like no apparent reason. (Especially when I look and my hair) It's a tough experience going through BC. There's so much that's unknown. It's a lot of emotions and that can be very draining. You'll be okay and give yourself some time. There's lots of professional help out there for dealing with emotions.
Glad to hear everyone is doing good.
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Sharing some updates. I have a diagnosis of unresectable locoregional recurrence, still stage 3. Same kind, er/pr negative, her2 positive. Biopsy report said metastatic. PET scan didn't show anything else.
Onco says stay on Herceptin/perjeta, until I progress. Second opinion onco says at least a year on H/P but when I pressed about past that, he said it was up to me. There are side effects so we'll see how long I can stay on it. Not many side effects now which is good. I am a little confused about why I can't do chemo again, and last appointment the onco said I could do chemo again but I would be on it long term, not just six cycles. I have a follow-up onco appointment in five weeks.
(Why can't there be a blood test or better scans to find out instead of this weird limbo thing, waiting to see if it shows up again?)
Finished 15 days of clavical area radiation; have a lot of inflammation in my esophogus from the radiation so can't swallow a lot of water or regular food because it's too painful. But I'm still hungry, which makes me panicked and eating not very healthy things like canned peaches, jello, milk shakes. Mushy green beans. I learned to get along with the rad. docs. I had a neck CT and it showed the nodes were not getting any bigger. I wish it showed they shrank but I'll take not growing too. Doc said the rads will keep working for six weeks. I never knew that so interesting.
Other than that, life goes on.
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DazzlingEagle,
Sorry to hear about your recurrence. 😢. It is good that they didn't see any further growth after rads though. I wish there was some easy fix for this whole mess we are in. I hope your doctors can agree on a treatment of either continuing on perjeta/herceptin or doing additional chemo. Especially if you are having minimal/tolerable side effects. Hugs!!
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Dazzling Eagle: Wishing you didn't have to go through this. Being in limbo is frustrating. We're here for you anytime.
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Dazzlingeagle, so sorry for the recurrence. Glad to read your oncos have a plan in place. From what I have read Herceptin/perjeta are a game changer for HER+ BC. Hoping you have amazing, long lasting results.
Reference the rads, did the RO say how long swallowing would be painful? Do you have something like a VitaMix to make smoothies?
Please know we are all with you on this recurrence and that you can talk here whenever needed. Sending hugs.
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dazzling eagle why does it have to be so hard to get a screening device. Think of all the pink sisters that could participate! So sorry you are back here with news 😥 I am still waiting for my pathology from my us. I had the procedure report in the portal. Then the removed it till the 2nd. Pathology said 7/4. See if that gets posted. Dr on vacay till 12th. Ugg.
Hugs your way💟
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Dazzling Eagle, thank you for checking in with us; I have been thinking about you. I do hope you find some fruit smoothies or protein drinks you like and that you are back to normal food soon. And of course hoping you get the very best medical care.
Wishing all of our US members a happy July 4 and a good summer to all.
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dazzling eagle, SO sorry to hear about your recurrence. I hope further treatments will help and that you aren’t kept waiting long. It is so confusing to deal with differences of opinion. Sending hugs and please know that we are all thinking about you and hoping for the best
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Dazzling eagle- can they give you steroids or something to ease the inflammation in your esophagus? I know they come with their own SE, but eating is kinda important, right?
Hoping you get relief and answers.
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well I got happy news to share! My biopsy was begnin!!! Fat necrosis. Still need to see Dr on vacay but cancer free👍 wish I could say that for everyone on these posts. Hoping to cut out whatever fat I have (lol) might not have any thing left to grow cancer on then😎 sending hugs to all that need it. Thank you all for your support 💪
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lisap62– so happy for your happy news!! B9 is wonderful news. Woot woot woot!!!!
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thanks so much I am doing the happy dance👠👠gingerly as my side hurts! Lol
My husband and son in law are going to see the Dodgers tonight. Father's day gift!
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llsap52, great news. So happy for you
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Great news, lisap62!! That's a reason to celebrate!!
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lisap62—. Last night’s game would have been a great game to see. Hope they gave a great time tonight!! And that you take it easy and heal quickly
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