Forum Discussion
Siewli
4 years agoMember
Waiting game
I have been diagnosed with breast cancer last Monday. I suspect that I m in Stage 4 as my specialist thinks the lumps have been 12-18 mths. I know my body is feeling pretty bad n getting nerve pain n isomia and yet I m still waiting for lymph nodes biopsy n PET scan to be done. Then another week of delay that I can see my breast specialist for treatment plan or surgery. I m afraid my body cannot wait any longer. Is there a way to get treatment immediately? Is this a norm to wait about 2-3 weeks to get treatment plan?
36 Replies
- ZoffielMember@Siewli PET scans can be a bit daunting--such mixed emotions where you hope the news will be good, but are terrified it will be bad.
I don't know what info about the test you have been given, but one of the most important things is to be relaxed.. which is something you have to fake on the odd occasion.
You will need to be really still for about an hour. Try to concentrate on that, rather than what the results might be. The people doing the tests are absolute pros who will not give you the slightest clue about what they think. So don't look for any of that.
Breathe slowly--I use a counting game where I start counting backward from 27 to 0. Then 26 - 0. Etc until 1-0. One long inhale and exhale per number. If I slow right down, that program can take me over an hour. It's surprisingly relaxing and distracting. But the, I'm a massive nerd. Why 27? If you finish the count, do the maths. :) - SiewliMember@arpie I don't have a breast care nurse yet. I m so nervous for my PET scan as I can feel pricking pain head to toe these 2 weeks. Can't help thinking I m in worst case scenerio.
- arpieMemberConcerning as it sounds to you, Try not to get ahead of yourself and the results @Siewli ..... take lots of deep breaths ... Do you have a breast care nurse to chat with?
All the biopsies, tests & scans are just tools of a more accurate diagnosis ...... it looks like your team is being very thorough.
All the best for the scan and the results xx. - SiewliMemberIt doesn't sound good that I received a call to book in for Dr phone consultation regarding my lymph node biopsy result n I m heading for PET scan tomorrow morning..it seems I keep getting bad news...
- SiewliMember@Julez1958 Thanks for the response and encouragement. I had a 18mm lump and next to it is a 7mm lump. It shows as Grade 2 cancer cell and shows lymph nodes have swollen plus I am feeling unwell with the nerve prickling pain at random places. Can't help feeling helpless in this waiting process. As what all the ladies mentioned above, I just need to wait for treatment plan to be out.
- Julez1958MemberHi @Siewli
Your heading definately resonates with me!
I was diagnosed with breast cancer in my left breast in August 2020 after I found a lump only 12 months from a previous mammogram.
The bad news was it was 5.5 cm but the good news was it turned out to be slow growing ( lobular , ER positive) and had not gone to my lymph nodes.
Because of the size of the tumour my breast cancer specialist got me to have a variety of scans including a PET scan and before each scan I was convinced this would be the one that showed I had stage 4 and was going to die soon.
It turned out I had stage 2 and after a double mastectomy and radiotherapy ( didn’t need chemo) I am on hormone tablets for 5 years.
My understanding is that less than 10 percent of breast cancer is stage 4 when diagnosed and the survival rate for breast cancer these days is very good but statistics are often no comfort when you are playing the waiting game and your mind is going to dark places.
All the best with your results and treatment - I found once I had a treatment plan I calmed down a lot. - SiewliMember@Afraser yes I shall look forward. Thanks for your response. I must eat well and keep energy up for next steps.
- AfraserMember@Siewli
Don’t blame yourself! Whatever we did or didn’t do, the challenge is to deal with what is now. Think of all the things we can’t check!! It’s exhausting to maintain a constant check on every part of our bodies that might suddenly malfunction. Keep your energy for the next steps. As everyone says, you’ll find it a bit easier with more knowledge and a plan. Best wishes. - SiewliMember@arpie Thanks for the encouragement. I just put in my location. Yes I found the lump myself as it was itching alot and did a self check and straight to GP that I found hard lump. Now I'm blaming myself for not doing self check regularly or ultrasound yearly for early detection.
- arpieMemberAbsolutely, @Siewli - definitely don't overthink things and DEFINITELY don't use Dr Google. A lot of the stuff that pops up there is very old and will most likely not relate to your diagnosis. It will only scare you. There is lots of good info on your other post, too - so maybe read that one again, too ;)
Try & keep as busy as you can in between the 'waits' - the waiting time between appointments & surgery etc absolutely mucks with your brain even more than anything else! .... Keep doing things you love, that will help distract your mind. If you can do physical activity as @Cath62 has said - even just walking - it should also help with your insomnia.
As it is such a sneaky beast, most of us would have had their cancer growing for some time before it was 'discovered' .... Did you find a lump yourself? Or was it a GP or was it Breast Screening? What state are you in - pop it into your Profile - we may have other members living nearby that you could even meet up with, covid willing?
Just take one day at a time, one hour, if necessary.
I hope you have supportive family & friends around you to help you thru this anxious stage and your ongoing treatment - once you've got your surgery date & treatment plan afterwards - you'll be surprised at how much 'better' you'll feel.
Take care