Stage III Cancer Survivors ...Five + Years and Out.
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Congratulations, MeToo14, and thank you for sharing your story and perspective.
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Hi Everyone,
Did the beginning of your journeys start with such despair and lack of hope? My path report that I received this past Friday was not good. We were going into my lumpectomy and sentinel node biopsy (in which my lymph nodes were clinically normal) thinking I was probably stage one. Turns out my my tumour(s) are only 11 mm and 2 mm but were hugely aggressive. On the biopsy report the path reported that there were micropapillary features (which is known to be rare and aggressive) but on subsequent examination of the tumour itself it was categorized as IDC-NOS. However, the all 4/4 of my sentinel lymph nodes had cancer present: 3 had marometastases (largest being 10 mm in diameter) and 1 had micrometastases (<2 mm). Unfortunately in one of the lymph nodes there were the micropapillary features. There was no extranodal extension identified. The tumour was ER/PR+ and HER2-. I am classified as Stage IIIA with Grade 3 tumour. Clinically this was all unexpected.
I live in the throes of disbelief, sadness, I only function the help of lorazepam right now, and have no hope for the future. While I would love to believe for some longevity I am so scared. I want to know whether any long term survivors had these thoughts and how they handled them. I will also most likely be going in to get a complete ALND.
I also now have to have a bone and CT-scan to make sure it has not gone anywhere else. I am absolutely terrified at that as well.
Any hints or suggestions on how to function?
My family has been so supportive but I cannot feel like I am letting them down. My boys are 7 and 12. My little guy does not want to talk about the cancer while my older one is a rock and helps me and cuddles me when I go away to cry. I never knew kids could be so very strong. My husband is a rock but wishes everything could go faster. My parents are beyond distraught but my mom dies a lot with me. I should also mention that I am 45.
This is truly the hardest thing I have ever faced. Thanks for any insight ladies.
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Sportymom, while I didn't have the micropapillary features (at least my report doesn't mention that) I did have extranodal extension on the some of the ten axillary nodes removed. Prepare for aggressive treatments, as they will throw the kitchen sink at it if there has not been any metastesis to other organs.
I'm over eleven years out and so far, still NED. There were some difficult moments, but nothing that couldn't be handled. You have a good support system which makes a whole lot of difference.
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Sportymom, like you, I was completely stricken with grief and fear. Every time I received results from some test or pathology report, I felt like I'd been bitten by the same snake, again and again. One son newly married, the other enduring a sad divorce. No grandkids and I thought I'd never live to see any. My sister was diagnosed with the same wretched cancer as me, nine months after my own diagnosis. It was so hard to fan the flame of hope. I was 56.
And here we are, thriving. We got through treatment one day at a time, like all of us must. Lorazepam and zolpidem helped a whole lot, and my oncologist put me on Prozac too. I wasn't really aware I was depressed, but within a couple of weeks I felt a bit lighter. Don't hesitate to feel better and get some sleep with the help of pharmacology.
I promise...I PROMISE...there are better, happier days ahead. For now--go to bed, wake up, and tackle whatever that day demands. One day at a time.
My signature line has a link to the blog I kept during treatment. I talked a lot about the miserable early days. I would invite you to have a look if it feels right. Gentle hugs, sister--SB
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Sportymom, most of us can relate to the feelings of utter fear and dread. My tumour was so big that I had all the scans up front to see if it had spread. I had to bite my lip through Christmas before telling my kids and getting the scans done. It was absolutely terrifying and awful. But like the other ladies have mentioned, it does start to feel better once you have a treatment plan and get started. I felt once I was attacking it, I was more in control. Now, there are some days I don’t think about it at all. And best still I cherish every day with my beautiful kids who are now 14 and 8. They were only 11 and 5 when I was diagnosed. Hang in there. Take each day at a time. Big hugs from us all
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Thanks sbelizabeth. Your post helps a lot. I also went to your blog. You gave quite a beautiful life helping people.
I am supposed to have my scans soon which is ultimately terrifying me more. They are not even rescheduled yet but the surgeon ordered them before we even met last Friday. They are considered urgent so should be soon. Terrified albeit.
I did call him and he called me back. I have requested an oncologist. He spoke with one oncologist about my case, but the one I had asked for (probably due to vacations) and they agreed that the best course of action was to start the chemo as soon as they can and then do the complete axillary lymph node dissection after. I have to trust that this is the best way but I worry as some people with high ER+ don’t respond to chemo. I think their reasoning for doing this might be the fact that my tumour is Grade 3. I know I have to trust and that is my biggest fear. Regardless, I was happy that he did call me back and left a message ( I was gardening at my son’s school at that time). He was very shocked that I was not a lower grade as well due to the clinical presentation.
I look to yours and everyone’s posts to regain some hope even though there is little right now. Thanks fir taking the time to write what you did. Your words fill me with the ability to simply keep on putting one foot in front of the other. Of course I do that with a little help of lorazepam as well. Without it I am out of vontrol
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Hi Newnorm,
Thanks for reaching out. Yes waiting for the scans is terrifying. I try not to not to go there as my anxiety spikes.
In terms of tumour size the small ones can be just as aggressive as I have unfortunately found out. All 4/4 of my sentinel nodes are positive for cancer; three macrmetasteses (largest diameter 10 mm) and one micrometastases (<2 mm). In addition I’ve if the lymph nodes has micropapillary features which classify it as rare and aggressive. This plus the LVI makes me beyond despair. No extranodal extension was identified but I don’t know how that matters at this point.
I think, with the help of my family and lorazepam (I have had OCD and GAD all of my adult life) I am trying to put one foot in front of the other. It seems to be the only way to function right now. My older don who is 12 is an absolute rock and strokes my hair and hugs me when I break down. My younger son is having a harder time and does not want to talk about cancer at all. He cries when he sees anybody cry. My husband, albeit a rock, is frustrated with the system up here in Canada; although from what I read on these posts and elsewhere the standard of care in North America and Western Europe is pretty standard and there is ultimately some waiting.
Thanks for taking the time to write. You probably know how much it means. Thanks again and Hugs
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Hello all. Grateful to be posting here after achieving 5 years this past weekend. No exclamation point, because the fear is still there when I delve too deeply, but I am here, and my two boys are doing super ( I was pregnant with my second set of twins when diagnosed- yes second). I had four children under 3 years old and was finishing up my chemo before my surgery ( lumpectomy, ended up having to go in twice). Then 30 days of radiation. I lived about 1.5 miles from UCSF cancer center at the time, and walked there and back for every appointment, to refuse to take it lying down, to prove it to myself that I was going to fight. Only caught an uber back twice, both hard times after the radiation had made me so fried that I couldn’t remember my name to put on the cup at Starbucks right after treatment. Just standing there...my name?
We were never able to grade the initial cancer, because we did neoadjuvant before surgery and I couldn’t have a scan while pregnant. But it was at least 5.5cm-lime sized- and the worst was feeling it from dx to surgery, almost eight months later. After chemo I could feel it break up, only to come back together just in time for my next chemo. We did chemo every three weeks instead of every two because of the pregnancy. And yes, I was pregnant w twins at the time. Everything growing inside me. The cancer and two little boys and I wasn't sure how the treatment would really affect them. I really had to disassociate myself from them until they were born. I could see the nervousness on the nurses faces giving me the AC (red devil) when I really started to get big. It was just insane! I always said to them, are you sure I can’t have a big glass of red and a cigarette? I mean, I’m getting chemo and all. Lol.
It’s just amazing what we can get through when we keep putting one foot in front of the other. It was easy for me, I had little kids to live for. But for those of you in the darkness right now...know that your life is a gift, don’t let go of it without a hell of a fight. Time will march on, the pain and fear will subside, and you will look back and marvel—it will absolutely take your breath away—how strong you were, and how strong you are. Just keep swimming! Dory—(I have to watch lots of Disney movies now!) See you in five! I may break it up into annual visits though, in case you miss me. Hang in there folks. ❤️
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Hi, Gatomal - inspiring post - thank you and congratulations! I'm also doing the Ibrance trial
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Thank you Gatomal… Good news is surely welcomed here.
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I passed my 5 year anniversary. Like all I never thought I would be sitting here celebrating 5 years. I had a rare presentation, primary occult -- no tumor was ever found. Just cancer in 8 nodes. I remember the day I got the call back -- shocked me as most said it can't be cancer as there was no lump found. I had 3 MRIs and 2 CAT scans. NADA found in the breast, just a hard lump in my lymph node under my arm.
I am here, living life and loving it. I still have my moments but so grateful to say 5 yrs and I can do things and push myself. What would I say to then self -- now. Live life, let others support you, and now that you are stronger than you would ever imagine.
Love Across the miles,
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Hi,
I am 1 year out from chemo, and my doctor has me going in for a CT scan on Tuesday. I am struggling a lot more with this appointment than I expected. I'm finally at the point that I don't think about cancer every day, and I feel blindsided by the CT scan, even though I knew about it in April. My oncologist is being proactive - wants to catch anything as soon as possible. But I want to live in ignorance for a while, if there's anything in there.
Please help me with the anxiety - I'm open to any suggestions.
PS I'm on the Verzenio trial.
Thanks,
Linda
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Anyone with IDC and skin involvement?
Hi friends I am undergoing treatment for IDC with a mass of 5.2 cm. I had little redness and skin thickness on the MRI. Little peel de orange and my oncologist thinks it's not Ibc and they just took one punch biopsy and it was negative. They still treated me with the same protocol as they treat IBC. My question are there any one with skin involvement and idc
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Linda, I had a PET/CT before chemo and my BM, and then again afterwards. Then I had a third before having my DIEP reconstruction two years later. I wanted to be sure things were still NED before I went to the trouble of another surgery.
I haven't had another one since then. Personally, I think your onc is going to give you peace of mind with a clear CT scan.
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Thanks so much for your response, Nancy. I've been so focused on the negative "what if?" that I haven't seen the potential for a clear CT scan. (I'm not usually this negative.)
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I have been wondering that same question
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I mean it’s possible. But on my mammo and ultra sound she said it looked like IBC. But I was hoping it would be be IDC with skin involvement. I think that’s def a possibikty
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sounds like we have a lot in common. I was recently diagnosed with IBC. I cannot even functions and have no hope. But I am on a emotional roller coaster ride and I get by with the help of Xanax. I have a 18 year old son who is my rock and another son who is 8 and a daughter who is 12. I fo away to cry ever since I found out. It’s like how can you not get it out of your head? It definitely a challenge. I’m here if you need to talk.
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Linda:
Don't assume that there is anything there. If you are not having symptoms, don't expect the worst. I am almost through chemo and I was wondering how you got involved with trials. I am also 3C and would be interested. Thanks and good luck with the scan. Bet it is going to put your mind at ease.
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Flo80, I had a 1.2 cm lump of IDC that was very close to the skin. It had a 3-4 inch umbrella of pink/peau d'orange over it that turned out to be chock-full of dermal lymphatic invasion. My team didn't quite know what to call it. It didn't involve 1/3 of the breast, depending on how you measured it, so it was "IDC with dermal lymphatic invasion." My current oncologist just calls it IBC.
Linda, my former oncologist was pretty free with scans and she ordered PET/CT the year after I finished chemo, and one the following year. She wanted to jump on any surprises early. Everything was all-clear. I know a lot of us go through scanxiety so hang in there and just know your chances of NOTHING showing up are much better than SOMETHING showing up.
Missmom, did you have your biopsy yet? Last I heard you were scheduled for a stereotactic biopsy to follow-up on the scattered sugar appearance on your mammogram.
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Thank you Shez. My oncologist thinks as I also did not have the peu de orange covering one third of the breast as it’s not IBC. She said that the it can be caused by lymphatic blockage without cancer in the skin as well. They only took one punch biopsy and had no cancer in it. But she said doesn’t matter as they are treating me with the same Trimodal treatment as IBC
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Also I am just halfway through my chemo and they said they will just do another MRI before surgery to see the response. They don’t do PET in my Canadian city
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I've been away for awhile. Those first days, weeks, and months following my diagnosis kept me lingering here to find some hope and encouragement. And that I did. I would read the stories of those who were 5, 10, 15 and more years out and still alive and well. It gave me hope and encouragement to keep going, keep up with all the treatments, keep eating well, keep exercising, keep hoping...I am forever grateful for the encouragement I received.
Tomorrow I will be five years out from that fateful day. Like Sportymom, I was also 45 at diagnosis and thought I'd be a stage 1. The pathology from my initial surgery threw our family for a loop. The first year was the roughest. High cancer marker numbers, an x-ray showing a spot on my ribs (no other test have show evidence of this), neutropenia (which still persist), adjustment to life on AIs (and no ovaries) and more. Yes, there's a new normal. Yes, I'm sad about it sometimes. But I also got a new appreciation for all that I have with each and every day that God has given. I'm so thankful for these five years and here's to many more for all of us.0 -
yes, it showed DCIS high grade with necrosis. 10 samples! All of them DCIS. But that doesnt explain the redness and thickness of my breast. So since then I have been to a surgeon for an exam ext and he ordered a mri. Now I go back for another biopsy of the breast skin I think and a biopsy of the lymph node. Sorry for the long delay.
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I was Stage 3b or c and I am 6 1/2 years out of diagnosis. I never give up and no matter what is thrown at me, I keep my eye on the goal of living my life as I want to.
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sbelizabeth… did you have any scans before beginning your treatment?
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Congrats Mommyof2: Thanks so much for checking in... Gives hope to all of us.
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Thanks mpv. I want to live to be an ornery old woman who makes everyone wonder what shenanigans I am going to pull next
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After the initial lumpectomy, when it was discovered my "tiny" cancer had traveled to six lymph nodes, my oncologist ordered a bone scan and a PET scan. When treatment was finished she ordered PET scans for the first two years afterward. After that, the deal was to report any strange pain or symptoms that lasted longer than a couple of weeks.
My onc was very free with scans, with the philosophy that people at high risk of recurrence need to plan their lives. But after the first couple of years, both she and I felt reassured, and were willing to forgo the enormous dose of radiation.
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I'm posting a month early this year. I was diagnosed in November 1995 so that make 24 years of DFS. I am just as crabby as ever and my left breast has not grown back. I don't know why, but this year all this October Pinkwashing is really ticking me off. I have been reposting Breast Cancer Action posts on Facebook and I'm sure that my Facebook friends are baffled. I'm tired of defining simple terms like metastasize, of listening to people say Massectomy instead of Mastectomy, of explaining that losing your hair is not the worst thing to happen, of telling people that "caught early" has no scientific meaning, of letting them know that not all women are good candidates for reconstruction (and that often reconstruction efforts are not successful), and of trying to have informative conversations about lymphedema. I hope that I will return to my not quite so cantankerous self when this month is over. In the meantime as I approach my 70th birthday I remain in good health with perhaps a knee replacement in the near future and cataract surgery on the other eye. I'm still working part-time as a medical biller which I enjoy and am already planning my 2020 garden.
I hope that all of you reach the important milestones in your life whatever they are. Thanks for listening.
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