30 days later and I feel confused
sjd_barra
Member Posts: 26 ✭
Hi,
I finally went to the doctor in October as my left breast started swelling over a period of 3 months, my nipple became inverted and I started experiencing constant dull aches and sharp electric shocks throughout my breast and nipple.
My doctor sent me for a ultrasound and mammogram. Results not good, 2.5cm lump 8cm from my nipple with tethering to my nipple and overlying skin thickening. He then sent a referral to my local hospital for a biopsy. 2 weeks later I get a biopsy and my doctor calls me back to confirm IDC.
Now another 2 weeks has passed and I am finally seeing a surgeon this Friday.
In the meantime my boob hurts so much, swelling increases with every period. I am on pain relief and I haven't told anyone, because I have nothing to tell.
I feel so outside of the system at the moment.
I finally went to the doctor in October as my left breast started swelling over a period of 3 months, my nipple became inverted and I started experiencing constant dull aches and sharp electric shocks throughout my breast and nipple.
My doctor sent me for a ultrasound and mammogram. Results not good, 2.5cm lump 8cm from my nipple with tethering to my nipple and overlying skin thickening. He then sent a referral to my local hospital for a biopsy. 2 weeks later I get a biopsy and my doctor calls me back to confirm IDC.
Now another 2 weeks has passed and I am finally seeing a surgeon this Friday.
In the meantime my boob hurts so much, swelling increases with every period. I am on pain relief and I haven't told anyone, because I have nothing to tell.
I feel so outside of the system at the moment.
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Hi @sjd_barra. I’m sorry that you have needed to join our group, but I’m really glad that you have,as there will be lots of great support for you from the girls on this site.
The first few days and weeks are definitely among the most difficult as you wait for answers and often feel like you are in a holding pattern until you have some sort of treatment plan.You have the awful diagnosis but not the rest of the information to move forward and complete the picture and that can be very stressful and quite intimidating. All I can suggest right now is to try not to over think things. I know it is difficult to tell people about your diagnosis when you don’t know what the plan is going to be. Maybe you could make contact with your local Breast Care Nurse and chat to her. She will know a little more about what is normal for appointment waiting times in your area and may be able to answer some of your questions while providing great support at the same time. I know waiting for your appointment on Friday will feel like a lifetime away, but perhaps you could catch up with a close family member or friend and go out for a coffee or see a movie. Easier said than done I know but if you can try to stay occupied and doing things you enjoy for the next few days, it might help stop your mind from wandering into the “ what if “ forest.
I will be thinking of you on Friday and hoping that you get a clear picture of what the next step will be. Please pop back on and let us know how you are going. We are all here to support you.
Take care
Polly
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Thanks Polly.
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Hello @sjd_barra
I’m sorry that you too find yourself here, but welcome. The first weeks were most certainly the worst for me. I worried and wondered what the future held. I’m only 4 weeks down the track from finding I have an invasive carcinoma that was tethered to my skin but luckily have found the necessary support to help me through.
We’re all so very different and for me telling a group of close individuals early on, and even before I knew what it was, helped me vent when I needed. I also changed my GP to a very proactive and strong woman who helped me be more analytical and less emotional. I was put in touch with a breast care nurse and have her number to call when I need. She also sent me a My Journey book that’s filled with helpful information.
Now I’m very open with anyone and everyone and have openly talked to colleagues, friends and family so that they feel able to talk about it with me and this too has been a big support.
I wish you all the the very best moving forward and reach out if you feel overwhelmed or in need of a chat xx
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Gosh, @sjd_barra .... sorry to see you here and in pain, I hope your surgeon gets you on his list asap.
Once you see your surgeon, you'll have 'plan' - ie when you will have your surgery & how it will affect you in the short term - then the wait for the pathology, which is always quite stressful. My diagnosis (ILC) was in early Jan this year - and all the surgeons were still on holidays, so I had to wait 10 days & saw him on his first day back. Your surgery will probably be very soon after that meeting. I had the Sentinel Node Test the next day (this determines which lymph nodes the tumours are draining to & reduces the number of nodes being removed during surgery) & then, surgery the day after that. I stayed with my brother & SIL in Sydney and it was terrific.
Whereabouts (roughly) do you live? Others in the area may be able to help with information that is specific to your area.
I initially told close family when first detected (cos I was sure they were cysts!) & then told those I wanted to know, upon diagnosis (they weren't cysts.
) Some, I told after the surgery - and the others will find out when I send our Xmas Cards out shortly (nearly 12 months later! LOL) You don't have to tell everyone - just those you know will support you ..... and if you can set up a bulk email or similar to fill them in 'after surgery' it is a lot less pressure on you than replying to everyone's individual queries.
All the best for your appointment on Friday xx0 -
Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet.It can be a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time.Navigating the online community
formerly the what and how thread.Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other
resources.https://www.bcna.org.au/resources/
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further
information or support please call 1800 500 258. BCNA’s helpline will now be open from
9am-6pm Monday to Thursday and 9am to 5pm Fridays.How to understand your pathology reports
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Thankyou for the links @SoldierCrab. Especially the one on understanding your pathology report. My report is incomplete but it has helped me work out a list if questions I hope to have answered.2
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@sjd_barra
ask away here about questions you have and we will always share others to ask.....0 -
Hi and welcome. It's a disappointing wait for you and I'm surprised your GP didn't phone through with urgency given pain and possible skin affected. I guess now it's only 3 more days (which will feel like an eternity) and you will see someone who should have a treatment plan pretty quick smart in place for you.
Start talking to close friends and family. Gather support. You do have something to tell. You know you have cancer that requires treatment and a shoulder to cry on or even some distraction whilst you wait is good idea. A support person at your appointment is also helpful as you miss stuff being said (as it truly is everwhelming) and get them to write things down for you.
Meanwhile I guess thinking about what type of treatment you would prefer to have helps. Usually 2 options. Mastectomy or lumpectomy with radiation. Knowing what you would prefer if the option is available, given your cancer and location etc, helps.
If you think a mastectomy and reconstruction is something you would want, having a bit of a read of the different types helps also. This way with first consult you have some idea what YOU want and not feel quite so overwhelmed when the surgeon goes through the different options with you.
Whilst we say be careful with Dr Google ...we all do it. Hense you found us.
Other good links
https://www.reclaimyourcurves.org.au/
https://www.cancerresearchuk.org/about-cancer/breast-cancer
And if you need to go down chemo road. Here are some links for hats and scarves if you think you would prefer that instead of a wig. (I know this stressed me a lot thinking about it...so good to have a plan)
https://hatshow.com.au/
https://chemohats.com.au/collections/all
https://www.hathouse.com.au/
Take care. Kath x1 -
Thankyou @primek.
My mother was treated for breast cancer 5yrs ago. Hers was found during a routine scan and within the next few weeks she had a treatment plan, surgery and a full support team.
She documented her journey on facebook from mammogram right up to now. It was a heart wrenching and emotional time for everyone.
I just feel that my time is taking longer.
But after reading all the stories on here I can now understand that everyones journey is different.
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@sjd_barra So sorry that you are here among us, but you will find this forum to be your lifeline for some time to come. You've already received great advice from the ladies above. I would add: during consultations, don't hesitate to ask for more explanations if you're unsure, and to ask if what they've told you = ALL the options. If they're recommending one option over another and haven't explained why, ask them to do so. If you have a friend with you, she may be able to pick up on things that you're missing if you seem a bit overwhelmed, and ask for more info as well. Big Hugs.2
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Hi @sjd_barra the waiting is the pits....I have just had my rant on here too...stick with the advice of the girls on here...they offer so much...Im not ready to advise but I will agree...everything takes so long....I was diagnosed in august this year and am now back to square one after having yet another lumpectomy to get the margins, so now waiting on pathology again. I dont know what came over me but early this year I just got a bee in my bonnet and started thinking life was too short (looking back it seems like i knew something was going to go ass up)...so I bought a little Aliner caravan and a car to tow it....not that I should really be buying things like that when I should be concentrating on paying my mortgage but it has come in so valuable....Im not sure how many times I have been away in it inbetween tests and surgery....find something to involve your time waiting....days seem like months!!! Hoping everything works out well for you...look forward to your progress....we are all thinking of you x2
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I am wondering about 2 things.
1. My boob is very, very swollen (almost twice the size of the other)
When I look at the area below my nipple and below my breast where most of swelling is, there is light bruising colour and pitting to the skin.
Now that I have seen it, I cannot unsee it. Can I ask the doctor to test for IBC or would they have done that when they confirmed IDC??
2. No-one has actually shown me any results. No mammogram images, no pathology reports. I have gotten all my information from just what I remember being told.
When I asked for copies, I was told that having them would make me fret and be depressed. I cannot help feeling that they are putting their own bias on me.
I think maybe the reason I don't want to tell anyone is because, other than a dramatic looking boob and a referral letter, I have no real belief myself.0 -
hi Sjd_barra
I think that it might help if you spoke to the lovely helpline at BCNABCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.
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@sjd_barra,
I've only just seen your post and just wanted to say welcome. The lovely ladies, as usual, have given you some good information already.
Yes, the waiting just sux. Endless waiting for results, waiting for surgery, waiting for treatment and just a whole lot of waiting for doctors that are running late. Once you see the surgeon hopefully things start moving along.
It is all very surreal at times. You feel fine,(bar the ouchy boob) there is no sign of you being "sick" so to speak and yet somebody is telling you you have cancer. Swinging from some kind of denial to absolute despair is very normal.
You are entitled to a copy of all of your results. The images probably aren't as important as the reports as most of us would have no idea of what we are actually looking at.
It is a good idea to keep all your reports and results in one place so you can take them with you to appointments incase anything is needed. If you have no luck with the doctors giving you copies ask your breast care nurse (if you have one) if she can get them for you.
It is handy to be able to refer back to them along the way as their is so much information to take in that remembering everything is near impossible. A list of questions is a good idea and don't be afraid to ask anything even if you think it might be silly. I took to asking "Can you give me that in dumb terms please" when the medico lingo was a bit confusing.
Remember, this is your body, your gig and you need information so you can make informed decisions along the way.
All the best lovely. Stay in touch. We all "get it".
xoxoxox3
