Trying to make sense of it all.....
Comments
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So glad you have the appointment. Having a plan really helps. Chemo or radio should start within 6 weeks. They missed my referral and just squeezed me in the time frame. I saw the oncologist 10 days after surgery in Adelaide. But a different oncologist (same team) would do it in Broken Hill. If I hadn't rung I would have missed the crucial time period...and mine was a grade 3 Es+ Her2+.
However...don't feel a fraud. Breast cancer is different fir everyone and you know as we all do that women die having slow growing bc too. Your personal experience of losing your Mum only heightens this awareness. It's not a cold. It's a genuine life threatening change in your cells.
My husband did the whole ostrich thing. Men like to pretend its just a little blip. They don't get the fear that goes with it (unless if course they've experienced something similar ) My husband really didn't believe it was bc until pathology laid out. (He quietly researched my pathology and quietly freaked out). However I could never discuss my real fear of dying and leaving them with anyone except other bc sisters. (My sister died of bc and 3 Aunts died of ovarian/breast cancer) Always the brave face at home. That's us.
This site is a great place to just blog about that. Saying...I'm scared, I'm terrified, I don't sleep. ..it's all okay. Because we get it. Whether it's a near miss, stage 0 or metastatic. ..the emotions wash over us all.
Keep ringing up to ensure you aren't missed. It's your health / your life. Kath x4 -
Hi Janine. Glad you got the appointment. My results weren't back when I saw the Doctor and had to go back a week later, but glad the results were all clear. The waiting is hard, but get to know your Surgeon as I have seen mine 4 times since 5th December, so lucky I have her as she cares how I am feeling s well as being a Surgeon, which makes a big difference in my Journey. It gives you a lot of confidence with a good Surgeon. I am up to Rockhampton today for my Radium Planning so hopefully all wounds have healed up so I can start soon. Some of the Ladies on this site have hard times to get through, but whatever type or stage your Cancer is, it is frightening words to hear YOU HAVE CANCER. I will be with you on this journey that we both are taking. x1
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Janine60 said: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.0 -
Hi Janine60
I too dx with stage 1/grade 1 (10mm IDC), 21st Dec, 17 had surgery Jan 10th received results yesterday 22nd Jan revealing I need a re-excision...(DCIS_unclear margins) booked in for tomorrow 24th Jan, 18. My daughter had stage 3 @ 27 years old 2010 so I have seen the sorry side of a more aggressive dx she is very well now thank goodness but went through awful time. I have thought I should be grateful not whinging either yet Cancer is a slippery sucker who likes to deceive us and that's what scares me.
Truth of the matter is I notice that dx is one thing and then pathology seems to reveal a bit more so one can never assume all will be well yet the doctors seem sure of their plan (for me). My concern is am I going ahead with this too quickly without thinking it through? I have read in some forums that people consider the Mx instead of the re-excision and on-going MMGs on more regular basis forever.
As the genetic aspect is not clear for us as a family (my 2nd daughter 32 yrs old to date cancer free). My First daughter (now 35 yrs old who had stage 3) due to genetic testing done which was inconclusive then will have her case re-opened up again as it was over 7 years ago now to see if she had the full gamut of testing done due to our Jewish ancestry (high risk of BC) also.
My two daughters and I are also Type 1 Diabetics which is not a great combination due to high risk of infections etc. etc. First daughter had bi-lateral MX, Chemo, RT, and Herceptin. Reconstruction was interrupted with emergency surgery for infections on all/most wounds, tissue expanders removed and waited 6 mths for full recovery to re-start whole process again. Now completed and going well.
Obviously we need to clarify all of this and check for other daughter's possible risks. I hope this makes sense of why I'm anxious atm. My partner (bless him), although largely supportive isn't happy to discuss as I think it's too confronting for him, he gets annoyed at me for not accepting what the doctor has prescribed for me.
Am I being ridiculous? I guess depending what the outcome of pathology is from tomorrow's surgery - perhaps then I should consider next steps. Radiology is also being done in one month's time plus hormone tabs. I am 61 yrs old.
Any feedback anyone?0 -
Kath, @primekYou said the crucial time was 6 weeks. Can you explain that a bit more? Just nudging 6 weeks now. The referral has gone in for radiology but once again, I haven’t heard from them.0
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With radiotherapy I can't comment on time frames.
I just know zi was told 6 weeks...but this can often be delsyed with women if ibfection etc.
So call radiology rooms referred to and tell them time frames since surery and ask when you will get an appointment and keep ringing them everyday until you do.1 -
Hi @Janine60
I'm a week post diagnosis heading for surgery next week. Stage 1 T1 and I'm not sure whether I qualify given it is so early and so treatable.
I've been good emotionally but hit a wall today.
I've felt a bit like my hand has been forced in letting people know because my sister told my mum before it was fully diagnosed. I've been in catch up mode and feeling responsible for everyone else's emotions. I know that's not necessarily rational. Telling my 12 & 14 yo nephew and niece was easier and less fraught than I expected.
I've had a couple of super stressful years so I'm not really surprised.2 -
I think we qualify. Kath said that in her post - people do die of Grade 1 cancers. I needed to hear that. I think I nudge stage 2 because the larger tumour was 2cm. I think it has to be less than 2cm to qualify as stage 1. My head tells me all the correct things and I think I cut myself short - it’s still cancer. I accepted the Endopredict. It’s very expensive but it will tell me around the potential to recur which is what I want to know. For us, logistically, it’s going to be a nightmare because we do not have radiotherapy in Shepparton. We have chosen to go to Bendigo and my husband is saying we’ll commute each day, to allow at least some of the day be predictable and we’ll be home each day. My two adult boys have intellectual disabilities which are severe. Their sister will fill in as much as possible. I am not sure how that is going to look for me yet. I think we need to acknowledge we do in fact have cancer although it is very treatable. I know that I haven’t been able to predict my emotions either and I have had a few ‘wobbly’ days. The women in this thread have been very supportive of me. Hugs. Good luck with your surgery and let us know how you go. Janine.0
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@Janine60 and GA sorry it is hard to tag you with only 2 letters in your name ...
You are both eligible to get some counselling under a mental health plan no matter how small or large your diagnosis is....
why not call the helpline at BCNAThe phone number for the BCNA
helpline is 1800 500 258.
Helpline hours are 9am to 5pm on Monday, Wednesday and Friday
and
9am to 9pm on Tuesday and Thursday.
Calls to the helpline are free of charge when made from a landline and charged
at standard rates when made from a mobile phone.They can help you to clarify the concerns you have and let you know about local services.
GA it must be hard I have 2 boys with autism and the stress it put on my daughter then 15 to care for us all while I was very unwell, was hard. see what practical supports are available to you all.
we are here and will always try to support you both and the team at BCNA helpline do a great job.0 -
@Janine60 I’ve just started my radiation treatment (5/20) and my understanding from discussions with both my surgeon & Rad onc is that the minimum time between surgery & starting radiotherapy is 6 weeks (to allow healing to be complete) and to get the expected risk reduction benefits it should be commenced within 4 months of surgery.
However as Soldiercrab suggests I’m sure the helpline can give you some credible references and I would certainly hassle the radiology folks about appointment times.
Be aware that after that initial consult, you will need to have a planning CT scan and then your rad onc will need some time to develop your plan, so there will be a delay between first visit and actually starting treatment. I saw the rad onc on 4/1, had planning CT on 9/1 and commenced treatment on 18/1.
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Hi there @Janine60 how did you got with your appointment? Please let us know. Hope you are ok. And @Crusty surely you must of had your appointment too now also ?. And that’s bullshit you have both had to wait that long. Like some of the other ladies said it’s the waiting that’s the worst I think. Once you’ve got your plan then you can start to get your head around it. I hope you have both been able to contact your breast care nurse or at the very least the social worker at the hospital for some support or the BCNA Hotline perhaps. And no matter what stage your bc is at it has its challenges and anxiety is a normal feeling and so is feeling fragile, and that’s just the tip of the iceberg. Shit I remember when I was first diagnosed and I saw my so called bc nurse and I walked away thinking fuck I’m going to die that’s it. Then thankfully I saw my oncol and felt so much better even though chemo was part of my treatment plan at least I knew where I was at after that. I then had another issues with the bc nurse and she was no support at all and to be honest I hardly ever heard from her which was disappointing but Im glad as she was pretty ordinary. So I took things into my own hands and found out about all the support services available myself and I got a lot of satisfaction about that as I now get to pass that info onto bc survivors in my local area. @Crusty where abouts in qld are you? Perhaps I can help you? I’m brisbane north side. Feel free to PM me if you like. Margie xx
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Hi @onemargie yes had oncology appointment on tuesday so I'll be starting chemo next week which is 7wks after surgery. We did try ringing around but got no where as bc nurse was on holiday and no social worker at redlands but the pa hospital finally rang on friday last week . I'll be having a masectomy in 6 months as i have dcis on all margins and 6 months of chemo in the meantime. I live on one of the islands in the southern morton bay so its a bit of a trip to the pa hospital (especially with 3 yr old in tow) and the hospital only does chemo in the afternoons so gonna be some late nights home.
Thanks for your concern i don't really have any other family around just my husband and kids and we've only been on the island for 12 months .
Thankyou.1 -
Crusty - we used to live in Brisbane, in Ferny Grove but made the move south four and a half years ago to be near family. I have seen my oncologist once and he has made the referral to radiology but I haven’t heard when that is going to happen yet. I guess I’ll find out when I next see my oncologist on Feb 1.0
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Hi Janine60, so I'll give my post another go since I screwed up the first one, thought it posted and it didn't. I was dx 21st Dec, 2017 with stage 1, grade 1A bc, hormone positive and Her2 negative so not the worst diagnosis but a cancer diagnosis always seems to incite fear.
In 2010 my eldest daughter (Rachel) @ 27 yrs was dx with 3rd stage bc (no family history prior to this that we know of). As she was so young obviously it was devastating news and as a mum watching her go through the various treatments I was heartbroken. (She is a type 1 diabetic since 9 yrs old). My youngest daughter, (Jessica) and I are also type 1 diabetics (juvenile diabetes). Remembering Rachel's struggles through Mastectomy within 3 weeks of dx followed by IVF, chemotherapy and radiotherapy and finally reconstruction which she had major problems and had to remove tissue expanders for six months and re-do the whole thing again left me very wary. Now that I have told you about our short history in bc. I am always curious to read how other people feel, react and cope with their individual cases trying to find leveling ground for my own feelings.
My lumpectomy (plus Sentinel Node biopsy - clear) was on 10th Jan, 2018 and at my follow up appt Dr. advised there wasn't a clear margin and he'd have to go in again and remove more tissue. I am 10 days post this and all is well awaiting Radiotherapy consultation on Wednesday. It all seems pretty straightforward according to my doctor and so many friends etc. I feel totally well and coping really fine, yet every now and then feeling a bit shell shocked - am I a wimp? I don't know, maybe I am.
All that being said I realise I'm quite lucky in that my treatment is way less than my poor daughter and the prognosis is great. My only question at this time is about the five years hormone treatment - I knew Tamoxifen was an option but my doctor has prescribed Femara which I heard had much worse side effects than Tamoxifen. I realise everyone is different so it may not be the case for me. Does anyone have any information or they can share with me on this? I am telling this story now so that I can look back in a few months/years time and hopefully go, wow so glad it's all over!!!
Thanks for reading my little blurb.
61 yrs young_dx 21/12/2017
Stage 1_Grade 1A_IDC_no lymph nodes involved
Hormone positive and HER2 negative
Lumpectomy 10/1/2018
Re-excision 24/1/2018
Radiotherapy - yet to happen
Femara for five years
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