Trying to make sense of it all.....
Janine60
Member Posts: 18 ✭
What I am feeling like at the moment, as I wait is that sometimes I feel like - I am not wording this so well, sometimes I feel like a bit of a fraud - being Grade1 and probably Stage 1 as well - maybe stage 2 but only on the cusp of it.I feel that with treatment things will be ok. I will breeze through it and that it will be like any other condition that I might be diagnosed with. Conversely, I have a bit of a wobbly day and think, no, breast cancer is a serious thing and I need to be mindful that life will change as I know it. I swing between both ideas and struggle with getting a real sense of how it will affect my life and that of my family's. With other people who have a similar diagnosis, have you felt similar??
I think half of the issue is that I have initiated all resourses myself - ordering the breast care kit, getting in contact with the breast care nurses. I knew I would need support so mobilised that myself. Even though I had a lumpectomy just prior to Christmas, I have had not had any contact with any professionals who can tell me what is going to happen. I have really no one to talk to. My mum passed away from breast cancer nearly four years ago. She had Grade 3, stage 4 that had already metastised to the liver on her diagnosis. She got 15 months. The breast care nurses have been lukewarm. They have given some information but not everything that I need.
What I am really looking for is some validation around what I am feeling and how other people managed it in the early days. Given my episode of breast cancer is only Grade 1, how much impact did the diagnosis and treatment have on peoples lives?
Sorry for the whinge - I really don't know how to feel.
Thanks. Janine.
I think half of the issue is that I have initiated all resourses myself - ordering the breast care kit, getting in contact with the breast care nurses. I knew I would need support so mobilised that myself. Even though I had a lumpectomy just prior to Christmas, I have had not had any contact with any professionals who can tell me what is going to happen. I have really no one to talk to. My mum passed away from breast cancer nearly four years ago. She had Grade 3, stage 4 that had already metastised to the liver on her diagnosis. She got 15 months. The breast care nurses have been lukewarm. They have given some information but not everything that I need.
What I am really looking for is some validation around what I am feeling and how other people managed it in the early days. Given my episode of breast cancer is only Grade 1, how much impact did the diagnosis and treatment have on peoples lives?
Sorry for the whinge - I really don't know how to feel.
Thanks. Janine.
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Comments
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@Janine60 its ok to be unsure how to feel about this..... we all react differently to our diagnosis no matter what staging or grade it is ....
have you given the lovely BCNA helpline a ring ? I have heard they are lovely to chat with and can give some reassurance about what is next.
I am sure others who have similar BC staging will give you some wise words and comforting ideas to deal with the days ahead.
My advice breathe in and out then take a step forward one at a time.... it will soon be easier you will know what is happening when and that will in itself be comforting.BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information or support please call 1800 500 258. The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.3 -
Im in the same boat as you. but grade 3 stage 2a i had my surgery a couple weeks before Christmas and haven't heard anything since then either . Tried ringing but everyone seems to not know either. I feel the same as you bit anxious but probably because when you don't hear anything it feels like you've been forgotten about.2
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Ladies go back and see your GP tell them you are still waiting on results etc.
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Yes - a little bit like that.....
Anxiety is a big component.
I think when I know what they want to do, I will be able to deal with it better because then i have something to respond to and manage.
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No-one, categorically no-one, should regret any capacity to breeze through this!! I breezed through my first 3 months of chemo. 2nd 3 months brought me down to earth so always remember, things may change! A life threatening illness is just that - some of us will get through with a bit of singeing, other will get seriously burned (sometimes literally!). I don't want anyone feeling guilty for not being "as bad" as someone else. You have crossed one line - something that might kill you, long before you are 95, entered your life. This must be much harder when it has happened to someone you care for too. How you deal with it varies immensely. Many just want to get back to their normal lives as soon as possible, many carve out a new normal and add something, often a bit intangible, from the experience. Some find their lives diminished in different ways and carry grief. I am a bit of a Lucy too - Peanuts cartoon, never happy until I know more than is good for me! So ask away - your medical team, here, wherever - until you get the information you need to deal with this part of your life in the way you want. Best wishes.10
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My head knows that... but emotionally feeling a little fragile about it all. I don't think my husband realises the consequences of it all either. He can swing between condescending and patronising to totally supportive. It's just his way of processing the information as well. I get cranky at the patronising aspect of his reaction and I will tell him to put a sock in it because it is not at all helpful. He has some health issues that need addressing and I am going to tell him, he's no good to me if he's not well enough to support me. I want him to sort himself out as well. It's hard to steer the ship when I don't have a rudder.
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Hi @Janine60,
You might just want to jump up and down a bit. That is way too long of a delay. Things may slow over xmas but they do not stop. Do you have a surgical review appointment booked?
If you surgery was before xmas they will definately have the histopathology results back by now. It only took 3 days for them to have mine back so had another surgery witihin 7 days to get better margins.
Get on to your breast care nurse I am sure she will be able to speed things up a bit. She will understand the anxiety of waiting and will be able to liase with your surgical team on your behalf. Once there is a bit of a plan you will feel better I am sure and what you are feeling is perfectly normal.
xoxox
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Hi Janine Yes I am the same, Operated on Dec 2107. 1st stage contained not spread, I thought the same this will be easy, but now realise it isn't. To start with no one rings back when you are sitting waiting and waiting, so I started ringing back myself as I hate waiting and have found things easier. The best advise I have is This will take time for you to realise it is actually happening and except whatever comes along, just go with it and next day will be better. I had a Lumpectomy, as well and Surgeon made both side the same so I had a lift when she did it, it looks so different with my nipple where I can see it now and Boobs smaller, but Surgeon cut a lot away to ensure Cancer didn't come back. Going to Radium tomorrow to get measured and make a plan`I had a delay on Radium as Couple parts werent mending, Surgeon suggested Stratamed to help it heal and it has worked in a week and sealed up( Great product) so off for Radium tomorrow for dates to
get it happening. Take this time to mend yourself inside out and appreciate each day, as life is so precious. Keep Positive, it is a different Journey each of us must make.4 -
I had a partial a few days before Christmas. The results took nearly 3 weeks to come back but as they weren't so good I had to go back in 4 days later on 8/1 for mastectomy and axillary clearance. This time the results came back in 8 days so if you haven't heard, shake the tree. There shouldn't be delays now.0
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I rang earlier when Kezmusc posted. I have an appointment tomorrow. The receptionist was saying that they had received the referral two days ago. My surgeon and the oncologist work and have rooms in the same private hospital. She was also saying that she was running another clinic today. I was a little unimpressed and said I had my op before Christmas! Maybe I am overreacting a little cos I feel a little fragile today, but then what she was telling me is not my issue and I shouldn’t have to wear that.3
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No it is not your issue and you Dont need to wear it at all.
glad you have an appointment tomorrow
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WTF...... @Janine60 .....Who cares if she is running another clinic. That's her job and so is empathy and looking after their patients. Seriously, what is it with private Dr's receptionists?????? It takes a pitch fork to get past some of them. That's just really slack. These dr's can see the results on the computer as soon as they are uploaded and available. It's not like they have to wait for the mail to come in! And why on earth does it take that long to get a referral through if they are in the same building??
You are not overreacting at all.
Sorry for the rant. Just pisses me right off.
Hopefully it's a bit smoother sailing from now on for you.
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I agree with @kezmusc - we find it is soooooo hard to get past medical receptionists at times - and that is not only in relation to BC. My husband and I call them ''the little gestapos". Trying to get an appointment - what the ??? As one unobtainable doctor was on emergency duty the day we had an emergency we got to see him - and my husband was quick enough to ask if he would be our doctor. He was a bit stunned that we could not get an appointment with him ! Soooo, we have a new doctor !!!! Since then we have phoned and got an appointment that day or the next - saves waiting six weeks, eh ?2
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I too had a lumpectomy in mid Nov followed by a re-excision in early December. I too had a stage 1 grade 1/2 cancer. In both cases my post -op appointment with the surgeon to discuss results was made prior to surgery and happened 4-5 days after surgery. I met my oncologist between surgeries and had my radio oncologists appointment made prior to the second surgery for the first week of Jan. I had my planning CT scan last week and start radiotherapy tomorrow. Fingers crossed all goes to plan.
I guess I am lucky that the ‘sausage machine’ of the system seemed to grind smoothly for me.
I too feel slightly fraudulent, although am also swinging from the emotional highs of “leave me alone, I’m fine” to the low s off “don’t you know i have a life threatening illness?” - funny old roller coaster!
Good on you for phoning and being assertive- it really shouldn’t take 4 weeks to get the results fro:surgery.
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Hi @Janine60
I too am/was grade 1 stage 1 - my only difference from you was that I had synchronous bilateral tumours (one on each side). I totally get how you feel as we are so very lucky to have been detected early and less aggressive pathology. But the waiting game is awful for everyone and it certainly brought me undone at times. Irrespective of your pathology there is still the shock of diagnosis, the pain of surgery, waiting to see if nodes and margins are clear post surgery, if drugs will/won’t work, if chemo is needed, radiation burns and fatigue, tamoxifen ... etc. The reality is bc is shit at best - even when the pathology is relatively good. Totally understandable you will have wabbles.
I’m glad you now have a follow up appointment- that was a long wait. I saw my surgeon a week after both my surgeries. Best of luck for confirmation of a positive outcome for you! xx3
