Forum Discussion
Dark days
Just diagnosed this month, 1.5.cm invasive tumour, plus 3mm by 3mm tumour I couldn't feel. I am 46, have had regular mammograms and ultrasounds for years due to lumpy, dense breasts. I self checked religiously and I still didn't feel this lump until it got to 1.5cm. I had lumpectomy and sentinel nodes out one week ago, and now find 5 out of 6 nodes have malignant cells, and the margin around the larger tumour shows carcinoma insitu that needs to be removed, so I am having a full mastectomy Monday plus full axilla node removal, portacath inserted and I will start chemo before Christmas. I have 4 children, youngest 7, oldest 16 and telling them was horrendous and watching their fears and answering their questions. Trying hard to keep going as normal and reassure them I will do all I can to be here for them. I have a CT of chest and abdomen today that surgeon tells me is just a baseline for the oncologist for chemo but I am terrified it will show metastisis somewhere in there and it will be too late. Its been one month since I found this lump and made an appointment that day with my GP and I feel like this diagnosis/surgery/treatment thing is taking forever. I just wanted it out the day I found it.
My husband is amazing and this is bringing us very close as we realise we can't take each other for granted any more. I have a very supportive family and have so much to be thankful for when others struggle through alone. But, feeling very alone and scared right now. Thanks for reading.
My husband is amazing and this is bringing us very close as we realise we can't take each other for granted any more. I have a very supportive family and have so much to be thankful for when others struggle through alone. But, feeling very alone and scared right now. Thanks for reading.
62 Replies
- Hello @ddon so glad to hear that you followed up with your surgeon regarding your portacath concerns. Understandable that you are feeling like you are all over the place. So much to take in over a short period of time and lots going on. Managing thoughts and emotions can be tricky, dont hesitate to call our helpline on 1800 500 258 to speak with one of our cancer nurses for support. Sounds like you have a great breast care nurse which you can also speak to about how you are feeling. Wishing you all the best with your next stage of treatment. Kind regards
- Hi Jennyss, I did get good advice. My surgeon said it’s quite normal for all this soreness in my upper arm because he had to get in between the muscles close to my shoulder to access the vein for the portecath. And I am small and my chest wall has no fat on it for padding and every time I move my arm it seems to dig into me. So, I was happy to know it seems all ok. And he told me I can start running again which made me even happier 😊
- Dear @ddon,
Hope you got some good advice/info yesterday - let us know.
Best wishes from jennyss in Western NSW - Thanks Beryl, I will do that. I have an appointment this afternoon. The breast care nurse I spoke to right after the surgery told me they can be very painful. I just don’t know if it’s normal to go on this long.
- ddon I've had a port for eight years and other than a few days following the insertion I have never experienced pain or discomfort. Suggest you discuss this with your GP or Breast Care nurse.
- Thanks Sister and Blossom. I get scared that the tubing has moved or something, or caused a clot or bleeding because of the soreness in my arm. I cant understand why the tenderness is in that area. Anyway it hasn’t become any worse over the past few days so I guess I can just check with the surgeon at my next appointment on Monday. It’s now 12 days and I am worried I will never get used to it. Just hope it works well enough that it’s worth the misery. I will take your advice and use the numbing cream. Sort of tired of things hurting 😊
- I used the numbing cream EVERY time. Problem was the portacath only worked half the time so they went digging in my arm. I should have lathered up all over in the numbing cream just in case.
- @ddon My port was very tender for a few weeks. Then it became just uncomfortable for a long time - felt heavy and I was unable to sleep on that side as the compression would cause some pain so slept on my back for months. It settled down about the same time as I stopped needing it, from memory. However, I am still extremely glad that I had it as, once it was working properly, it took so much of the difficulty away when getting treatment and it means that my veins have held up which was pretty important to me given the other arm is not usable.
I would suggest that you mention it to your doctor and certainly to the nurses when they come to jab you - they need to know about it even if for no other reason than to take extra care not to hurt you. You can get numbing cream to apply before treatment if you need to but I never used it and was fine. - Thank you Blossom ( loving your username). I have read up on these portacath and nowhere says that they should be this bad after almost two weeks. 48 hours blah blah and I get scared that there’s something wrong. My upper arm feels so sore and stiff. Back to the ibuprofen and Panadol.If I pull my big girls pants over my head I may just leave them there 😫
- @ddon My portacath was also more painful than my mx or anx clearance. Quite normal. Whinge away. You are quite within your rights to. I was constantly pulling my big girl pants over my head because it was easier that way. I got through. Sending big hugs.
