Irrational thoughts

DCIs stage 3… Iv had surgery lumpectomy re-excision and bilateral mammoplasty still waiting for result on margin. Lymp nodes clear. My oncodx means I need chemo… I can’t help thinking this means the worse. Will I live on to Have a healthy life after treatment. Does chemo mean that I’m gonna die from My cancer… i feel like I am going to wake up soon and this is all a bad dream. Am I being irrational?

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Hi we all have irrational thoughts when first diagnosed with cancer , Once you have all your results and treatment plan you will find you will feel much calmer also lots of help on this forum with chemo your not alone positive thoughts you can get through this xx

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Having chemo does not mean you are going to die of cancer. I think our minds automatically go to the worst case scenario - that is human nature - but your oncologist will be able to give you an idea of your prognosis. I had grade 3 invasive ductal carcinoma plus a very large high grade DCIS, triple positive. I had to have chemo, mastectomy and targeted therapy and am now on ten years of endocrine therapy. Once I was through my active treatment (2 years ago now) I was told that because I had had all that treatment, my risk of recurrence is now very small. At times I find it hard to believe, but it hasn’t come back. I was diagnosed in January 2021. I hope this gives you some hope. xxx

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Thankyou. Glad to hear your doing well… yes it helps. I was having a moment and sometimes don’t know who to share my worst thoughts with for fear of scaring them. I will also have the same treatment as you for ten years and hopefully have a
Positive outcome x

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The good news is that there is lots of treatment they can give you for triple positive so although it it an aggressive type of breast cancer, it also has low recurrence rates due to the effectiveness of the treatments. Good luck with the rest of your treatments. xxx

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There’s a tendency for people to think chemo = incurable/more likely to kill you but it’s simply not true.

Personally, I would have freaked if I wasn’t having chemo too. It is so effective and the 3rd Gen chemos (the Taxanes) have transformed survival rates.

Yours is DCIS. Mine is invasive so had spread out of the ducts and into my nodes. My 15 year prognosis is 88%. 5% of people by that age would have died from something non-cancery. So, if I wasn’t planning on being one of them with a heart attack or car accident then actually my prognosis is 88/95*100 so 92.6%. I’d take this odds on a horse race any day! That’s a Stage 3 cancer whereas yours sounds like Stage 1 on what you’ve said.

I’m months ahead of you and my head is only just quiet about this. It was so noisy in there for a long time with intrusive thoughts. The exhaustion you feel on chemo possibly helps you submit to it too and accept things a bit more as you really see just how well you can cope through chemo as you’re basically a weeble trying to stand up so they can poison you again!

I don’t know your type of cancer but yours sounds very early. For me, I read more peer reviewed papers and educated myself and it calmed me but it doesn’t work for everyone.

You’re back in a waiting phase too for margins and that doesn’t help one little bit either. You’ve reminded me how scared I was, waiting for the definitive pathology! That was a way worse time than the chemo bit! X

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Thank you I’m so grateful to know that this busy head will pass and I appreciate there is a lot worse than myself. Mine is actually stage 3. I don’t understand all the other stuff and abbreviations on the diagnosis and I don’t feel the need to explore that just yet. I will when I am ready… thank you and I wish you all the best for your future…x

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After 5 months, I still don’t understand the abbreviations on here! How is yours Stage 3 if your lymph nodes are clear? That sounds very confusing? X

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Worry is normal, but I can tell you that four years on from Grade 3 with several lymph nodes infected, I am cancer free and leading a happy and active life. I had mastectomy, chemo and radiotherapy which took their toll but you just put one foot infront of the other and soon you’re through. Have just had scans and am all clear and really none the worse for the experience. Please take heart. All the best

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Thankyou that is very reassuring… pleased to hear your doing so well x

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I don’t think The stage refers to the location. However that’s what my diagnosis says. Biopsy stage 2 then after surgery they said stage 3.

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Hi

Are you sure it’s not grade 3 and not stage 3 as these are two different things.

I was grade 2 for the lump but became stage 2 as it was in two lymph nodes as well.

Wishing you well
Jackie

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My understanding is the onco score determines if chemo will be beneficial to you. They do not want to give chemo to people who have a low onco score as it maybe wont work. I had invasive Lobular cancer, 6.5cm, yep a big one that appeared overnight ! Grade 3 and Stage 3 as had some node action!. Shout out to my surgeon as I had clear margins !
Chemo for me wasnt too bad , found out i didnt have a pointy alien head when i lost my hair which was a plus :upside_down_face: :sweat_smile:
I was 63 when diagnoised and now approaching my 66 birthday too fast !!
Not saying its all easy as i have bad fatique but im out there enjoying my new normal.
Ps i actually got married this year too after 16 years :heart: ! I dont like to rush into things xx

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Stage does refer to location. It’s the stage your cancer is at. Stage 1 is DCIS but not attached to chest wall or into other structures, Stage 2 in out of ducts and may include the sentinel node and a few others or could just be in the rest of the breast. Stage 3 is well into the nodes (a is less so, b is more so).

Grade is the aggression of the cancer. In a lot of ways it’s better to have Stage 1, Grade 3 than Stage 3, Grade 1 as aggressive cancers tends to respond better to chemo while Grade 1 cancers are more reliant on surgery being perfect.

It may be worth talking to your surgeon to understand you Grade/Stage/TNM and look at your Predict score once you know what treatment you will have as it really shows you your prognosis and I think yours sounds like it may reassure you and help your head not feel so worried.

X

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Yes please forgive me iv just checked my letter it is grade 3. 24mm tumour dcis NST, ER 8/8 her2 neg oncodx 26 margins not clear … dont ask me what it all means but sorry for the confusion… thankyou x

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Without wanting to sound like a nutter, you got an 8/8 ER which is great as responds well to chemo. HER2-ve is slightly less aggressive (but in a good way!). HER2 +ve is more likely to recur earlier but less likely to recur later on so it’s slight swings and roundabouts on that one. I didn’t get Oncotype as no need since in nodes so chemo is necessary anyway.

ER8/8 is good because they can suppress your ovaries but the big win is Tamoxifen/Letrozole. Those drugs have TRANSFORMED recurrence rates. They are single-handedly responsible for the biggest jump in prognosis in the last 20 years. ER 8/8 benefits from them specifically. Mine is the same as yours but more advanced and my surgeon said “If I was shopping for breast cancer, this is the one I would want!”

I’m assuming they’re going back in on surgery? That sucks for you! Xx

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No problem, we are all here to help each other and try and understand it all.

I remember my consultant saying don’t confuse the grade with the stage so you are not alone.

Take care
Jackie x

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Thank you it’s all so confusing… I had second surgery last Thursday… dressing removed this week and results of margins next Wednesday… I have been referred to oncology at level 2 so that’s 4 weeks from referral … my surgeon has been amazing and I have no complaints I just have these days where I can’t get my head around it … it’s crazy to think how fast life changes for us but I am overall very upbeat still working etc just confused lol x

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I found it all a lot clearer once I was up in Oncology rather than in Surgery. It becomes a predictable routine and soooo much easier once the diagnosis bit is over so hopefully things will become easier after Weds for you! X

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Thank you so much … this has all been so helpful… my only question would be is chemo weekly daily etc and can I disappear abroad for a weeks break before hand do you think? X

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