Chemo port and reocurance

I don’t know what extra capsular extension is I’ve not heard of that before. 

You are not alone with the fear of recurrence, think we all have that fear but the main thing is everything is treatable even at stage 4. We need to learn to get on with our lives, I know it’s hard, I’m currently awaiting my first scan results following treatment and the fear is awful but I know if there is an issue they can deal with it. 

I would not get caught up on positive nodes. From research and what doctors have told me it doesn’t make any difference whether you have one or one hundred cancerous nodes, it’s all down to the grade which determines how likely it is to come back.

And you are not doomed. 13 mm tumour is very small! Mine was 5 cm. I also have faulty brca gene which comes with a load more worry. 

I didn’t have a port so can’t give you any tips on that I’m afraid but sending hugs and wishing you well for Tuesday xxx

Hey! So extra capsular is extension is where the cancer has pushed through the lymph nodes and gone into the tissue around it :( that’s encouraging to hear about the nodes, everywhere I seem to see online says it’s a poorer outcome with positive nodes as it has the potential to spread elsewhere which really worries me! What treatment did you have? Are you awaiting a CT scan after treatment? I have found during my short journey into this so far that waiting for results from tests and scans has been the worst! Fingers crossed for a great scan result for you! I remember being so scared for the results of my ct scan but all was good! 

I have just recently been tested for the brca gene and awaiting the results, very nervous about them! Did you have a family history to have the gene? And are you doing any preventative surgery because of it? I hope everything is going well for you. I know how scary it all is but I love your positive vibes of the treatment options even if people become stage 4. That’s my biggest worry as even though there’s treatment, it’s no longer curable but there is new treatments advancing all the time which gives me hope! Hope your doing ok xx 

I honestly wouldn’t worry about the lymph node involvement. The lymph nodes form part of the breast. I’ve heard of people with lymph node involvement living a very long life. How many lymph nodes did you have affected? I had one sentinel node. 

I had mastectomy after my diagnosis in October 2024 then I had chemo March- Aug then radiotherapy in Sept-Oct. On medications now. The brca test result took ages to come through. If I’d got my result before my mastectomy then they would have removed my other breast then but I’m going to have the other one removed in a couple of years once my oral chemo has finished. 

Yeah a few of my uncles, cousins had tested positive, my auntie died of breast cancer over 10 yrs ago, it came back when she finished her 10 yr medication. My uncle had breast cancer a few years ago, is ok now though.

I had an MRI scan last Monday, the genetics team instruct them yearly. They are a lot more sensitive than mammograms so they prefer them. Think I would have just had a mammogram otherwise. 

Yes it frightens me too, but I often look at the likes of kylie minogue and sally from coronation street they had it so long ago and are doing ok now. 

Hi

Try not to worry about the port. Having mine put in was probably the worst part of my whole treatment, but once it was in it was a complete godsend.

I too am hideously squeamish, but honestly them accessing the port is no trouble at all - and it certainly doesn’t hurt. You can barely feel it so I wouldn’t worry about numbing gel. I’ve never had it

I've finished my chemo now but I’m keeping my port in for another couple of years just so we can use it for the last remaining 4 Zoledronic acid infusions

Good luck - you’ll be through it before you know it

Ah yeah that’s true - didn’t really look at it like that! I had 2/2 sentinel nodes positive but they have offered me radiotherapy on the armpit instead of full axillary clearance as they’ve said most the time when they remove the other nodes they either aren’t cancerous or there’s only a small number involved with small cells and the risk of lymphoedema is high but radiotherapy does the same job. It’s probably best for someone like me with high anxiety about all of this to not know how many other nodes are involved and just get on with the radiotherapy if it works just as well so I went for that option! Did you have clearance or radiotherapy on the armpit? 

Sorry to hear about your family having it as well  at least you know about the gene so you can do everything preventative for it. My two great aunts had breast cancer and my dad has had prostate cancer. 

Glad you get to have an MRI each year! I’ll definitely be wanting that as well! What type of chemo did you have? And how did you find the chemo? Xx

Ah thank you! That makes me feel better! My port is soooo sore though still and I start chemo tomorrow! Hoping the pain dies down a bit for it! I am glad I got it though as I couldn’t cope with a canula every time! How did you find the chemo? Xx

Yes I had axillary clearance and I have an awful armpit scar that pokes out the back. I also got cording where I couldn’t straighten my arm so had to have physio. If I don’t do exercise it goes stiff so yes endless problems with lymph node removal. I was never offered radiotherapy instead so I would definitely recommend you go with that option. 

I had 9 weekly sessions of paclitaxal and 3 three weekly sessions of EC. I worked throughout chemo and continued my weekly reformer Pilates classes. My only real side effect was constipation. Second session of EC I lost most of my hair (despite cold capping) so stop my Pilates classes then.

The chemo was nowhere near as awful as I’d feared. I had 12 weeks of Paclitaxel. I felt a bit rubbish certainly for a day or so after each infusion and I lost probably 85% of my hair. It was horribly straggly so I had it clipped to about 2mm and oddly it felt much better. Other than my hair my main symptom was loss of energy. I just didn’t have the stamina to do a lot of things but I went out for a walk every day and I could still go out a bit. I just kept away from crowded places. 
With hindsight it’s only a very short space of time. You’ll be through it before you know it

Good luck x