Stage 3c How do I keep from obsessing about recurrence
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Hi MVP459. I'm sorry that you're going through this but glad you are here to get support. I wish I had come here earlier.
I too was absolutely terrified of the whole thing. I had a huge phobia about the entire medical field prior to cancer, so a port, chemo and radiation were mentally debilitating for me. I seriously thought about just calling it a day and skipping the whole thing. Now (6 months out) I am glad I went through it even though I am still struggling. Every person handles treatment differently, but I will share that I didn't get sick once during chemo, and I don't have any burns from radiation. They have come such a long way with the chemo drugs themselves, and there are so many options for anti-nausea now. I took a pepcid and steroid each morning and a different anti-nausea med at night that allowed me to sleep. I had 2 options for nausea as needed, only took one of them a couple of times, more as a precautionary measure than anything. I'm not saying any of this is easy, but share your fears with your oncologist, and don't be afraid to speak up if something doesn't work for you. Always remember that while you drew the short straw on BC, you still are in charge of decision-making for yourself, your body, and your mind.
It also helped that I continued my hobbies and continued working (to the best of my ability). It really helped distract me from my darkest thoughts. Sometimes, not all the time lol. I allowed myself to cry and yell and enjoy my red wine when I needed to.
Sending big hugs. You will get through this!!!
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Hi everyone. My first post, though I've been lurking for months and reading so many inspiring and hopeful posts. Thank you, everyone, for sharing your fears and victories.
I'm here just raising my hand to say, "yeah -- me, too." I'm through surgery and chemo and am in the middle of radiation, and I'm already fretting over persistent aches.
My oncologist told me he expects me to see cancer again because of my many cancerous axillary nodes. Fortunately, I got a second opinion that was much more positive.
At this point, I wish I had a switch I could toggle -- knowing/not knowing -- so I could be better at spending time undistracted with my folks, etc. Thank you all for reporting in that this can get better with time. For those like me and still in their first couple years, (fist bump) I'm with ya'.
Old-timers and newbies, let's all hang in there.
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JMouse-thanks for posting and nice to meet you. May I ask how many cancerous nodes you had? And when your MO talked about expecting to see cancer again, did he mean local or metastatic recurrence? Holy crap if my MO said that I'd lose my mind. I'm glad you got a second opinion. Without knowing more about your type of cancer it's hard to weigh in any more. Anyway, best wishes to you!!!!!!!
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Hi, orlando74, it's very nice to meet you, too! I'm so sorry you are going through this as well.
Sorry, I'd messed with my Settings. I think I've got my details appearing now. In case they don't ...
I'm about 10 years older than you, also with no family history of breast cancer, and diagnosed last autumn with two ER/PR+ HER- tumors and 16 of 18 underarm nodes positive. (No other nodes were biopsied.)
We're all hoping I don't recur, but my oncologist thinks I'm likely to metastasize someday. Fortunately the other oncologist spoke about my odds way more positively. 🌈 So if you see any similarities, don't despair! 🌈 (I really don't want to bring anyone here down. I like my primary MO for many reasons, but his kindly-voiced doom and gloom is not one of them.)
Yes, holy crap, I know. Surprisingly, I made it half-way through chemo before I *really* lost it.
The cancer in my mind is so much worse than the cancer in my body, it seems at times. I totally understand the obsessing. I'm still hanging in there. Hope you are, too. I don't have tips to share yet, but I will when I have 'em.
Best wishes to you, too. Hope to see you around here.
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Chiming in here - I don't have many words of advice, but I feel you on this. It is in my mind everyday, and pretty much every time someone mentions plans in the distant future I have a mini panic session in my mind. Especially when it comes to my kids and husband - I frequently think of their world without me. It's tough to keep those thoughts away, but I try, and try to live in the moment, eat well, exercise and all that. Crossing my fingers that it works (and I keep coming back here to see people like lkc and YATCOMW to find inspiration and hope
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Hi, Lexica. Nice to meet you.
Oh, the distant future plans panic -- I know that one. I wish I could help lighten your fears (and your worries about your family).
If it helps, a friend's wife was diagnosed years ago as a 3C with a huge tumor and a few nodes, and she is still NED and lives joyfully. She's a hoot and an inspiration.
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Hi Jmouse,
Just chiming in to say I heard similar gloom and doom from my oncologist, something like “even after treatment you remain at significant risk of dying from your disease”. That was at my first appointment! My 3rd opinion MO had a brighter future for me, saying number of nodes doesn’t matter as much as previously thought and it’s the response to treatment that matters. I’ve only been NED a little over a year but plan to stay alive out of spite just to skew my original MO’s stats or whatever it was that prompted her to tell me that
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My friend Minh, wants you to know it is year 24 NED, she was stage 3c, many nodes loaded with cancer, grade 3. She did chemo, radiation twice, and hormone therapy. She had bmx with DIEP reconstruction.
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Thank you to all of you for your kind replies. I am going to fight this thing with all that I have. I have lost one breast, had a port installed, will start chemo this week and have darn near lost my mind crying and worrying. Now it is time to fight and if I lose at least I will know that I lived every day and did my best. So glad to have found this group.
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Thanks, JMouse. Momchichi, yikes with that MO! I like that - skew his statistics out of spite, lol 😁. Lets all do that!!
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Just wanted to say hi, because although stage 2B, I am at high risk for recurrence, which is in my mind every day.
My cancer was (is?) grade 3 and, after intense chemo, I still had two axillary nodes with macromets (with extra capsular extension), plus lots of cancer left in the breast (with lymphovascular invasion); I just don't make any plans for the distant future, which in a way is a relief, and this is in my mind every day, but I still enjoy the present mightly.
mpv, you will feel better while in treatment, that's for sure.
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Chiming in here-I completed Chemo in January, radiation on 4/19 and started zoladex and arimidex on Monday. Hoping for DIEP early 2020. I think in regular life it is bad to compartmentalize, but with cancer I think it is a reasonable coping mechanism. Yes it’s there lurking all the time. But I just won’t let myself get down the path imaging a world without me in it-i acknowledge that it is a possibility by that is it. I have done everything I can to prevent recurrence-and now I need to get back to living so that my time here isn’t wasted. I look forward to a point in the future where I don’t think about cancer every day and I’ve been promised by the veterans on this site that it will come! So no great advice just another person to say we are all in this together!!
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Momchichi, thank you for your note. (The Momchichi ad jingle is playing in my head now.
) Your first MO told you that in your first appointment?! I'm so glad you spoke to other oncologists! Yes, I like Lexica's plan: let's all skew statistics out of spite if nothing else! Meow13, thank you for your story of your friend Minh. Lexica is right: it's stories like hers and lkc's and YATCOMW's that inspire... and fire my spite. ;P
KK2018, you are about a month ahead of me in fairly similar treatment, and I agree on the compartmentalizing cancer thing. I look forward to that future day, too.
LaughingGull, I agree, being in treatment helped. (I'm Team Lymphovascular invasion, too, by the way. Woo, go team.)
mpv459, I cried a great deal in the second half of chemo. It's just where I cracked. Have you found anything that has helped you? I joined an in-person BC group (through the medical center) and even called a BC counseling hotline -- SHARE -- and spoke with a lovely women who was battling BC, too. And of course, I stumbled upon this forum.
Thanks everyone for writing. Nice to meet you all.
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Minh's youngest daughter was just 6 months old when she got the scare and horrible diagnosis in 1995. Now her daughter has graduated from college and off on her own. Minh help convince me to go for DIEP reconstruction she did it bilaterally, I did my left side. You never lose the fear completely but she sure is well on her way. She inspires hope that even with a horrible diagnosis it is still possible to live cancer free. By the way she still worries it really never ends.
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JMOuse… How are you doing. I am now 1/2 way through chemo and seem to be losing it more now than at diagnosis. Let me know where you are in treatment and how you are feeling. Our stats are so similar somehow I think there is comfort in numbers. Sending you my very best.
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Hi mpv459. Thank you for asking. Sorry, I've been away from the boards. How are you holding up?
I hit my lowest point half-way through chemo -- specifically after A/C was done and a few weeks into T. I cried a great deal from dread and despair. I railed against advice from loved ones that I should feel certain ways, ignore what I knew, etc.
I don't know if this will help you, but I finally noticed I was crying on certain days of the week -- the following day after Taxol infusion and again about three days later. I don't know if you're experiencing a pattern, too, but maybe Taxol is/was augmenting our moods. I did feel emotionally better-ish a couple weeks after chemo was over. So there is that to hope for.
Now after radiation and well into hormone suppression, I still fear what may come... but it's often easier to cope. Just getting back into my old "normal" life helped me phenomenally.
I still find not dwelling difficult, and I still have a good cry occasionally. I suspect this will take time. Hang in there. I wish you all the best, too. Please let me know how you fare.
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JMouse: Thank you so much for your reply.. Yes... I do notice a pattern with the "blue " feeling.. I have taxol on Thursday and then have depression on Saturday and Monday. So I think that you are right. Hoping as I approach the end I will start to feel better as I resume my life. I know that I have a high rate of reoccurance but see many women wo seem to live a good long time after being diagnosed. Thank you.. Please stay in touch.
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mpv459, yes, I've been told I'm high risk of recurrence, too. I also am trying to believe in the chance of living a long time. Thank you for mentioning our similarity in stats. I wish you weren't on this path, but the company is a solace. Let's do keep in touch. Please let me know how the rest of treatment goes for you. Hang in there.
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Hi!
I was just wondering , did you change your diet after diagnosis? How many positive lymph nodes did you have and what was your treatment? I was diagnosed last year at 39 too . Had a total hysterectomy to be able to take femara. Are you on any maintenance? Vitamins? Sorry for asking to many questions.
Keri
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I had a 3cm tumor in one axillary lymph node at diagnosis. I had at least 2 lymph nodes -- and maybe 3-4 -- when diagnosed (hard to tell precisely from imaging and the biggest one hiding the other/s). Current rubric would call me 3C but I was diagnosed before they changed it.
What I have done is clean up all the factors I am in control of. 1. very clean diet of whole foods, all nutrient dense, favoring produce, scant animal foods. NO crap or non nutritive calories (except as a very rare treat). 2. Intense exercise program (stairs, hill hikes, and pilates). Supplements like EGCG, Curcumin, Omega 3 etc (quite a few more antioxidants) that help my overall health and immune system. 3. Intermittent fasting. 4. 20mg melatonin at night (one has to work up to this amount) 5. Metformin. 6. I still do high dose IV C every several weeks (did a lot more in treatment).
I did all of the above during treatment and so I just kept it all rolling.
I am feeling very very good these days. I feel better than pre cancer when I think I had a lot more inflammation in my system. I feel like being pain free and full of energy is a good starting place and that I would notice a dip in energy or a new pain.
I staggered my OB-gyn, BS, and MO appointments so someone professional has their hands on my boobs every 4 mos. I staggered my US and Mammo as well.
My MO offered to order an MRI any time if I feel too scared to go without -- but because statistically it does not change outcomes I have so far been ok with no MRI.
Personally with TNBC I have the most intense window of recurrence in the first 3 years and thereafter the risk is very low, for TNBC to recur. I am going to keep up my exercise and food regime permanently but will drop the High dose IV C when I get past 3 years. I am halfway there. The silver lining of TNBC for those of us who respond well to treatment.
I know I still have a risk of recurrence, roughly 10%, but that's not that dissimilar to most women who have not had BC. I feel good physically and that helps keep worries out of my mind.
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Hey there Orlando74.
Hugs to you. I feel your pain because I have been there. My first diagnosis was a 7 cm tumor ER+ PR+ Her2- with only 2 positive nodes but extracapsular extension. I had the same treatment as you. My oncologist kept telling me at the time that my treatment likely would not work and she gave me two years. I was a basket case. I was 41 then.
Fast forward 16 years this March. Wow, I can't believe it. I am still here. I did have a new primary/recurrance in the other breast 3 years ago. I had a mastectomy and am on aromatase inhibitors - first Arimidex, now letrozole because I couldn't stand the side effects of Arimidex. Anyways, my new oncologist is much more positive this time and tells me I have a 10% chance of recurrance in ten years. So, I consider myself very fortunate.
The obsession with recurrance is very common I am told. I certainly suffered with that the first time around for 5 years or so, considering my oncologist told me I was a lost cause more or less. But over time, it lessened. So much so that I was shocked when a new primary appeared 13 years later. This time around, I got appropriate mental health treatment for myself. I am in a trauma group for PTSD and it really has helped tremendously. Maybe counseliing support for yourself?
I wish you years and years of health and energy. Odds are in your favor actually.
wallan
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@Meow13, how many lymph nodes involved
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Thank you so much wallan! I feel very fortunate that I received such excellent treatment and now my big fear is contracting COVID19!
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hi! I was wondering if you opted for Oopherectomy? What type of AI or are you on tamoxifen? Have you change your diet? What about coffee and alcohol ?
Sorry for the too many questions. I was diagnosed at 39 too, 13 positive lymph nodes
Ker
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thank you to all you posted here. I just finished treatments and I'm very scared of the potential of recurrence as well. I had prominentLymphovascular invasion and an extra node in the neck that lit up pre Neoadjuvant chemo. I hope things turn out well but everything I read scares me and my oncologist figures I have at best a 60% chance of being recurrence free.
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