Feeling confused about what happens next

So sorry you have found yourself in this situation!  It is so hard and for me I found that in the first few weeks I woke up through the night or early in the morning feeling like I was in a nightmare and sobbed my heart out!  So did my husband! These hours were the hardest to get through....when you realise the bad dream is real.

There will be a lot of ups and downs but you will get there.  Please cry, please yell, it will be a release! It won’t take it away but it will help! I don’t know how many tears I shed at the beginning and here there and still at the “end” of it for me!

I was diagnosed in August last year and have completed 7 cycles of chemo every 3 weeks, the last 4 with pertuzamab and trastuzumab which I am still having and will finish in November 2021. I had a lumpectomy and one lymph node removed in March and have just completed 15 sessions of radiotherapy.

My oncologist has recommended that I commence with Zoledronic acid every 6 months for 3 years and Anastrozole tablets for 5 years.  I started these tablets today and the acid next week. Goodness only knows whether I will get side effects or not!

I do not believe in taking drugs, medication or anything that doesn’t belong in my body.... but here I am I have had had everything you can’t even imagine!!!

so you could say the full monty..... it is like whatever there is, I am getting it! You name it, I have had the scans, the treatments.... but it is all for the best - they will get you through it and they want to get you through it !  The hospital team want to help you! Don’t be scared, just ask when you need to know...l there is no silly question!

Good luck on your journey! I was stage 3 also, HER positive. My last chemo was 21st January and it reduced a 6cm lump to no trace! Hard but so worth it x

Hi Madmolly, sorry you're going through this, it's really crap. If you click on my profile name you can see my story but I am also grade 3, which is about how quickly it has grown.  From what I understand, the MRI confirms the size of the lump itself and the CT scan confirms if it has spread to other parts of the body.  I fully admit the thought of spread completely freaked me out, but I understand this is quite routine for large lumps.

Everyone's treatment plan is different, which is good as they really do the right thing for each individual circumstances, that's ironically the good thing about breast cancer, they have so much knowledge and expertise in treating it.  I am in the middle of chemo before surgery.  The lump is shrinking but I  will s till have surgery to remove what is left and to remove some lymph nodes for checking.

The waiting for tests is the worst, so my advice is to keep busy. It helped me to focus on things I could control (what I eat, how much I exercise) as there's so much going on that I could not control. I hope you get your tests, results and treatment plan soon, honestly I found it got so much easier after  all that was clear.

and the support in her is fab by the way!  Best wishes xx

Sorry you're going through this. Waiting for endless scans and results is the worst part, but it is necessary to have a full picture of what they are dealing with so that they can tailor your treatment plan to you.

I had an MRI scan to check size and shape and this also shows if there are any other lumps in your breasts.

I also had to have a CT scan to make sure it hadn't spread anywhere else in my body - the waiting for that result was the worst by far.

They decided after my MRI that I would have chemo first as they discovered my lump was on my chest wall so they wanted to shrink it, but the CT scan would allow them to decide how to treat me.

Mine hadn't spread and they were able to start my chemo, but I also needed a heart scan to check that was OK before starting the chemo. 

For me, it was 7 weeks from GP appointment to first chemo session which i actually thought was really quick given how many scans and tests I'd had!

I then had lumpectomy and radiotherapy and started hormone therapy during chemo as they wanted to shut down my ovaries to put me into menopause so that I could take an AI drug.

The good thing about breast cancer is that they can really tailor it now so even if it seems like you have the same cancer profile as someone else, you might have a different treatment pan because your team is doing what is best for you and has all the information to make those decisions.

Good luck with it. There's nothing anyone can say that will make the waiting any easier, but you will get through it.

Hi Madmolly I was also recently diagnosed and am grade 3. My initial scans showed no sign of any lymph node cancer so I had a lumpectomy to remove the lump, plus a lymph node biopsy at the same time. Unfortunately cancer was found in a lymph node so I now have to have further scans to see whether it has spread further and to stage the cancer. I've been told that a treatment plan will be finalised once the scan results are known. I can't change the scan results but am trying to keep as positive as possible whilst waiting for them, although it's not easy. My advice is to just take one day at a time, avoid using google, and don't worry about what may or may not be 'normal' as your treatment plan will be individualised to you, based on your specific circumstances. 

Do you have a breast care nurse (BCN) that you can contact? I have also been confused by what is happening next but my nurse has been very good at explaining things. Once your scan results are known then a treatment plan will be discussed with you, although bear in mind that plans are not 'set in stone' and can change. It's not surprising that you are feeling overwhelmed by everything but I've found that just taking one day at a time rather than thinking ahead, and speaking to the nurse if confused about anything, has helped. There is support available here too from others going through the same and things will become clearer for you once the scan results are known and a treatment plan has been discussed with you. Hope your scans go well x

Hi Madmolly

Welcome and sorry that you have been diagnosed with Breast Cancer. Like you I had cancer in my breast and in my lymph nodes. My was also grade 3 . I had a CT Scan and a bone scan to see if mine had spread. Luckily it hadn't. It's very overwhelming at first when you don't know your treatment plan and with all the information your medical team give you, They won't give you your treatment plan until all the scans are done so that they can tailor your treatment to your situation.

Wishing you the best of luck with your scans and whatever treatments your medical decide to give you.

Best wish and take care.

Daisy53

Hi Madmolly,

I am new to the forum and just came across your post. Sorry to hear you are going through this and are feeling confused and unsure of what will happen.  I am going through a similar experience. I was diagnosed with breast cancer in March (Invasive Ductal grade 1- hormone receptor positive HER2 -) and was told lymph nodes looked clear. However I had three nodes taken as a precaution during my lumpectomy. Unfortunately one came back positive so breast care team advised I have full axillary node clearance, which meant my second surgery in 5 weeks. I had the procedure 10 days ago so await the results in two weeks to find out what staging it’s at and the best course of treatment. Prior to this my plan was lumpectomy, radiotherapy and hormone tablets, so now looking at possibility of chemo too. 

I hope you get more answers soon to what treatment you will have. Please make sure you contact your breast care nurse anytime you’re unsure. I’m always ringing mine up for reassurance. And it’s lovely to have this forum to chat to others in the same situation. 

Hugs 

Kazco