Feel a bit stupid posting this and I really don’t mean to offend or upset anyone who has heard worse news than me in terms of how far advanced their cancer is or the surgery they have had to have - but I feel really odd today and just needed to tell someone.
Long story short -
diagnosed with DCIS back in August - lots of scans / biopsies before first WLE on 31/09. Strong family history - I am aged 33, older sister diagnosed in June aged 36 and her cancer has spread to bones, fraternal grandmother also had bc aged 37ish. Dad died of liver cancer a year ago.
Pathology from WLE came back with 14mm of invasive cancer within the original 18mm of DCIS. ER+ (6/8), Grade 3. Told I would need chmotherapy, radiotherapy and hormone therapy. In addition the margin on the DCIS was not clear.
Back in for surgery on wednesday this week for re-excision to get clear margin and do the SLN biopsy using an OSNA machine, which basically means they test the sentinal node while you are under the GA and get the results within about 40 minutes - if it comes back clear then they stitch you back up. If it comes back not clear they do the full node clearance and send it off to the path lab to see how many are involved.
Mine came back clear - which is obviously good news… so why am I not more happy? I had been so anxious waiting for the second surgery date (3 weeks from being told the news) and just hoping that the SLN would come back clear. Now it has I just feel a bit overwhelmed. I guess it is the fact we now move onto the next step - which for us is IVF to try to freeze embryo’s before I go for chemotherapy. I’m hoping the margin comes back clear this time as it was only 0.1mm of DCIS into the margin in the first place - and the surgeon said she took quite a lot this time to be sure.
Just been on the phone to the fertility unit and have an appointment next friday to do the consent forms and learn how to inject the hormones etc. Ihave asked the BCN if there are any worries about this with my cancer being ER+ and she said no and my Oncologist (who I have not met yet) would support it even if it meant pushing the chemo back a couple of weeks. I was stressed about the SLN coming back with cancer involved because I would have had to start the IVF stuff before getting the results back on the rest of the nodes. That is obv not an issue now but I kind of feel like I need more confirmation that is ok to do the fertility treatment. Feels a bit like I am making these decisions on my own.
Just from my own understanding I think my result yesterday means I am stage 1 - which in the world of breast cancer must be a good thing right? I just wish I felt more upbeat about it. Everyone else iin my family is really relieved and happy(ish!) and I feel like I’m being really negative. I AM really pleased with the SLN result - but then I still have all this other treatment to face and having had SO MUCH bad news in the last year with my sister and dad - I am just waiting for someone to spring the next nasty surprise on me. Like at my next appointment - apart from the margin not being clear or telling my I am HER2 positive I don’t know what else they could spring on me? The news has got steadily worse so far so I am struggling a bit to believe yesterday went well.
Just read my post back and feel like a whiny moo now - let me just say that I COMPLETELY get that I have got off lightly in the surgery stakes with just two WLE’s (assuming that is the end of surgery for me) and I am not in any way complaining about being Stage 1 (again - assuming my understanding is correct).
I know it is not a competition but I understand there are other ladies facing much more serious surgery and prognosis. Do not want to be ungrateful.
Hi
just answering really to keep your post from disappearing…just want to say that…I am a lot older than you at 54…five weeks off anyway…but…I can understand you being over whelmed really…you are only young…not had your kids yet…it’s bad enough being older and being dx but when you are only young it’s understandably worse…the dx’s we all have are awful…it’s not a competition and you have only been dx for a short while…your poor body has suffered surgery not once but twice and you still have a way to go on your journey…you’re not a whiny moo…you just seem anxious to me…hope you are not offended…we all need time to get our heads around this cancer malarky and you have been through a lot…just be kind to yourself…take it one stage at a time…I just went from one appt to the next…I couldn’t handle anymore than that…I read a link that said to try to manage one hour…one day…or one week at a time…whatever is best for you…my v best wishes for you and hope your treatment goes smoothly…
Hi Brady
I don’t think you’re whiny or ungrateful and I’m sure you won’t have offended anyone here.
As Applestreet points out - you’re really very young to have all this to contend with (I’m 47 so I’ve been lucky to have had a lot more pre-cancer years than you). What a terrible thing to have to have extra treatment to enable you to have a family. You’ve had all the trauma of your sister’s diagnosis, your grandmother and your dad. Plus the surgery you’ve had already. And the road ahead must feel very long at the moment.
Don’t be hard on yourself. Your emotions are bound to be all over the place at the moment and even with clear sentinel nodes you’ve still had a lot to contend with with the surgery you’ve had so far - I wouldn’t say you’ve got off lightly. You’re bound to be feeling a bit battered and bruised - both physically and emotionally. The good thing is that you can come on the Forum and express your views to people who do understand. It’s better than bottling up your feelings.
Take care and do feel you can come on here to talk openly about how you’re feeling.
Thankyou Applestreet & Flori - appreciate your replies.
I think you are right and I’m probably just expecting a bit too much of myself right now. Still very early on in all the treatment and lots still to think about. I understand the “one day at a time” idea in principle - if someone could just let me know where the ‘off switch’ is for my brain I would be happy to put it into practice!
Brain does have a habit of racing ahead - I guess I need to give myself a bit more time to get to grips with things as they happen.
Ah Brady, I know only too well the question of the off switch. Here’s a poem I wrote a few years ago when I was in a bit of turmoil (that time it was having been through the threat of redundancy and having to get my job back, plus other things). I hope my comment about not believing in God doesn’t offend you, or anyone else who may read it. I’ve been through another notice of redundancy and having to get my job back again since then - it really doesn’t do much for stress levels. Then I was diagnosed with cancer 7 months after the latest one.
Where’s the off switch?
Find a switch to turn off my brain
Before it drives me more insane.
A flaw I think in evolution
So tweak a gene and find a solution.
If there’s a God he didn’t plan
For one like me when creating man.
The off switch, which he sadly omitted
Draws me close to being committed.
If there’s a God what did he do?
He really didn’t think it through.
Perhaps a prototype he had in sight
And after me he’d get it right.
A manual override he should have inserted
Then all this torment he could have averted.
But then, I don’t believe in Him.
So to allocate blame – where to begin?
Sleep deprivation, I should say,
Led me to this right of way.
Not a path I’d choose to take
But was no choice that I could make.
Another night and still awake
Driving me mad, for pity’s sake
Let me sleep, or in the morning
I’ll be fit for nowt but just for yawning!
Only during troubled times
Does poetry then spring to mind.
At the edge of sanity creativeness
Keeps me awake and adds to stress.
I think the rhyme is running out
Just as well or I might shout
And ball and scream and throw a tantrum
Just from sheer exasperation.
Hiya Brady
I think it’s completely understandable that you are not feeling “upbeat” about your result. In the midst of the horrible and life changing events that our diagnoses and treatments throw at us, its not so easy to feel pleased about stuff like that. Since diagnosis, my emotional reactions have been (still are) completely different to what Im usually like - and often unpredictable. Its a huuuuge amount of stuff to take in and deal with.
One of my nodes was involved from my SLNB, so I had axillary clearance 2 weeks later and the usual wait for the results from that op … during which time I resigned myself to hearing how much more involvement there was and was guessing what was likely to happen next etc etc. I could kind of visualise the cancer sneaking through all my nodes, and off out into the rest of my body (how mad does this make us, lol) - it was a low point for me.
The rest of my nodes were all clear . I had NOT allowed myself to consider that result and can clearly remember just feeling completely flat when the surgeon told me. I was keen to get on the phone to let everyone know the results cos I obviously knew it was great news and it would be a relief for people - but I didnt actually feel anything much, definately didnt feel any elation, or happiness at the time. After a couple of days though, I felt lighter (hope that makes sense) and then more lighter lol - like when people say a weight had been lifted off my shoulders. It was a lovely feeling - but it took a while and it was gradual and it took me another couple of days to realise that it was a feeling of relief (Im slow - I know)
Spose what Im saying is that we cant rely on our usual predictable or automatic reactions to events when we’re going through such sustained challenges and stress. I’m certainly paying now for decades of being laid back lmao!
I wish you luck and good wishes x
Just want to share my sister’s story to give you a bit of hope.
She was diagnosed with breast cancer at 32yrs-very aggressive. A number (4?) lymph nodes were affected. She had surgery, chemo and radiotherapy and took tamoxifen for only 2 years because she wanted to have another child.
Shortly after completing treatment she became pregnant and had her 2nd daughter.
She is now 14 years post treatment and living a happy and full life.
. I had NOT allowed myself to consider that result and can clearly remember just feeling completely flat when the surgeon told me. I was keen to get on the phone to let everyone know the results cos I obviously knew it was great news and it would be a relief for people - but I didnt actually feel anything much, definately didnt feel any elation, or happiness at the time. After a couple of days though, I felt lighter (hope that makes sense) and then more lighter lol - like when people say a weight had been lifted off my shoulders. It was a lovely feeling - but it took a while and it was gradual and it took me another couple of days to realise that it was a feeling of relief (Im slow - I know)