I wonder if any of you could offer me advice regarding my most recent diagnosis? I have been corresponding with a lady on this Forum and she’s been very helpful telling me about her treatment but I could do with a bit more advice so I am armed with info to tell my onc.
I have TNBC so I know the options are limited. I’ve had a chest wall recurrence this year and had a re-excision in May and another in June but the pathology suggested not clear margins, despite the best efforts of my surgeon. To cut a long story short, I found out after a PET scan that I have cancer activity in my subpectoral area and I was hoping they could remove it. However, I now have malignant nodules in my skin - had one lump removed from next to my last scar. My surgeon has said they can’t keep doing more surgery because I’ll just keep getting more nodules.
When I saw my oncologist after the 2nd surgery he only suggested radiotherapy to my supraclavicular fossa and is saving chemo for palliative care. The chemo he suggested was the TNT trial (but I notice that’s finished). I’ve had FEC-T which only “bought me 2 years”. I don’t see the value of having Docetaxel if it doesn’t work for me because I know the side effects. I can’t have more radiotherapy to the area where the lumps are growing - they are going from nothing to about 3 mm within the space of 3 weeks.
I’ve been trying to get a second opinion for weeks and I feel that with the speed the lumps are growing I’m fast running out of time. I’m supposed to be getting a quick appointment with my onc (he has been told of my latest diagnosis) but I guess he’s delayed that because I’ve asked for a 2nd opinion.
What has/is anyone else having for similar? I can’t shake off the ‘sick to my stomach’ feeling and, having very rarely cried previously I’m struggling to stop now. I can only see things progressing quickly without some form of systemic treatment.
Not sure I can give much help but I feel for you. I also have TNBC diagnosed last year, 13 years after 1st one.
Perhaps you could ring your Onc’s secretary on Monday asking when you likely to get an appt. If the number is not on your appt card or letter, ring the Oncology Unit & ask to be through. You may have to leave a message but you should get a call back the same day.
My lobular tumour “the alien” is in the abdomen & I don’t find much info around but luckily have a great Onc. who explains CT scans etc. I began Capecitabine last October and had a break after 8 cycles, will be starting again next month. He aims to keep me as well as possible for as long as he can but unable to say what it & the fibrous tissue round it will do as it could obstruct the kidney.
I’m sorry to hear you’re being put through the ringer. You must have been feeling it was all behind you after 13 years.
I have a lovely surgeon who I have a lot of faith in and is doing his best to help me but I feel written off by my oncologist. I prefer your onc’s idea of keeping you as well as possible for as long as possible. I’m 49 and don’t feel inclined to just give in.
I’ll phone my nurse on Monday. The onc’s secretary - to put it politely - is less than helpful and I don’t have time to put my concerns and questions on paper and send them via snail mail (her suggestion when I tried to contact him previously)!
Hi again Monica - wow, you really don’t need any unecessary frights from your onc not reading your notes! Plus a domineering attitude isn’t necessarily helpful. I don’t think mine has read mine properly either because he was going to order a CT scan but I’d already had one. I’ve got fed up of bank holidays and annual leave this time. I can’t afford all the delays as they just increase my stress levels. Last time I got through the system much quicker.
I used to check out the Forum after my first diagnosis and it was a great help just to know there were people who understood and could offer help and support. I did go to a, reasonably, local support group a couple of times when trying to get on the list for a recon. I might try going again but it’s a 35 minute journey each way so I don’t always feel like venturing out that far in the evenings.