Hello again. Maybe I should add "avoid consultations with the oncologist on Friday 13th" to remind me about today but I'm not particularly superstitious which is just as well as I was born on the 13th. I had a CT scan in early December and the only thing that troubled the consultant was that one lymph node was suspicious in that it seemed slightly larger. But it may simply be how the CT scan was done, the angle of the scan. So as a precaution, I had another scan as soon as possible which was last Friday. Back today, yes that lymph node is actually fine, but the scan now shows small tumours in the liver. So now we know the paclitaxel chemo I have been receiving has kept most of the cancer at bay but it hasn't been able to keep the lymph nodes in the liver area from getting bigger or prevented it from spreading in this area. I was advised to go on to GEM/Carbo now, in preference to choosing eribulin. This latter drug will be shortly withdrawn by NHS so it is the last opportunity to go for it without private funding. Obviously I want to give myself the best chance I can, so after discussing pro's and con's I've gone for the GEM/Carbo option. I just hope I've made the best decision, but won't really know till the next scan in 9 weeks time. It's all very scary but I'm keeping positive thoughts and everything crossed. Also I just cannot believe how aggressive this cancer is.
Hi Boatgirl .... sorry to hear about the good news and bad - nothing is ever straight forward is it? As the liver is the the only spread, i wonder if you have considered surgery or ablations/nanoknife to the liver tumours - this has certainly lengthened my prognosis and may be worth finding out about x
Max, thanks for replying especially in your situation. I think all options need to be looked at. I asked the oncologist about surgery and was told no. I actually have been looking at nano knife and I have to say the only reason I know about it is because I remembered some of your posts mentioning it. It's good to hear that it has worked for you. I have signed up for the GemCarbo as its a straightforward swap this coming weds at the chemo suite with the drug I've been on. But I'm also going to get ready for the next oncologist appointment including the possibility of referral elsewhere even though the travel will be a challenge.
Gill .... there is no doubt that oncologist's opinions vary re surgery etc for BC patients but I do think that there is a lot of evidence showing that some procedures now do lengthen prognosis in suitable candidates. Remember that you are free to ask for a second opinion and also that your scans can be sent to a liver specialist or radiologist (re ablations/nanoknife) for their opinion too. You can only make informed decisions if you gather this information from others - I found my designated cancer nurse was invaluable at helping me with this. I am glad you have sorted your chemo out and I hope it goes well for you. Keep in touch x
Max, thanks for the new information. As regards a designated cancer nurse I haven't seen her for almost a year so I should rekindle that avenue, and maybe she will be as helpful as yours in getting my scans sent to a liver specialist for an opinion.
Ok just to say everything is moving forward now. I'll see one of the cancer nurse specialists tomorrow when I'm at the hospital for chemo. I hope to get the Ct scan images. Then on Thursday I have an appointment with a leading radiographer, so I'll know more after that.
Well, its been an interesting couple of days.
Chemo day was ok - GEM/Carbo seems fine. Apparently there is not the same necessity for a coldcap as it only thins the hair rather than making it all fall out. Well I couldn’t miss the experience so I have decided to continue with them but only for the infusion time - 1 ½ hours – which is half the time previously. Chemo nurses said they had never heard of anyone asking for the CT image data and wouldn’t know how to go about getting it (they did volunteer to find out and chased up the cancer nurse after a reasonable time passed).
The cancer nurse was extremely helpful and arranged to get the disks containing my CT images. I found myself carrying away a bag of them as they had given me them all from the start. There was a modest charge which was fair enough.
Off to the appointment today. It was good to know straight away that these procedures could help me. I was also told that I looked in good health, which should indicate I am less likely to struggle in recovery.
The scans turned out to be poor quality - the resolution they were saved to was the key issue. Nonetheless, looking back at the December scan there was at least one discernable tumour which was not reported previously. This was measured and compared to the latest scan in February 2015 and the increase in size was a mere 4mm. There should be a significant improvement in outcome as a result of going in for the procedure (alongside chemo) as it is more manageable. Not usually the case if the cancer is spreading too quickly, as it won't make any difference to the outcome.
Two sessions of ablation are being recommended for me, the first using the NanoKnife, possibly RF ablation for the second time. I am going ahead so am getting dates sent through.
I will also be going for a change of scene – a different oncologist and different hospital. Why not? I think both me and the OH feel the time is right and we need to feel more assured about CT scans and the advice we receive. Even if the reason for the poor quality CT scans was simply because they were burned to disc in a lower resolution there was still an underlying failure to report on tumour activity in December (which my untrained eye could see) and possibly also even earlier in my September scan. That really is not good.
I’m much happier now, and thank you, thank you, Max.
Hi Gill ...... it was so good to see your message and know that you feel you have been helped by another opinion. If I can help in any way with info on the nanoknife please let me know and I will see if there is any way someone can pass on my email address to you - I think Davek is on Facebook and am sure he would be happy to pass it on privately. I found it a really easy and effective procedure to go through - nothing to worry about. What does RF involve? is that heat?
I am glad your chemo is going well too - I havent got off the loo since the first cycle of my new drugs last week haha! Never had this problem before! Your OH seems very helpful and will hopefully be instrumental in finding you a different oncologist if you feel the time if right. All in all - a good positive week for you and well done for acting on your hunches - I am glad you feel more reassured and happy. Keep in touch x
Hi Max – sorry for the delay in getting back to you - I’ve been away at the seaside this weekend. It was good to have a change of scene but weather was rough!
Now fixed up to do Nanoknife on 3rd March, and the second session will be on 18th March. It would be great to be able to talk more about it with you.
You are right, the RF (radiofrequency) and microwave ablation both use heat methods to destroy the cancer cells.
I’ve had some side effects with this chemo, but actually some of it may be down to the anti-sickness drug which has caused me to bung up and the doctor prescribed “something to help”. Not used to this any more than you being the other way on. The only other problem I have had is tingly fingers (peripheral neuropathy). All in all a small price to pay to keep me going!
Hi Gill ..... Wow thats good news! I only had one session - willl they do the same tumour twice or different ones in the second procedure? Are you on facebook? - I am not but I am sure Davek will send you his link so he can forward you my email or tel no if you want to chat more abt nanoknife. Its such a shame that the moderators here cant do that for us - they have both our email addresses and even more of a shame that private messaging hasnt been reinstated!!! Moan haha!! x
i do have a Facebook account though I am not a big fan. I wish there was PM again for this site!!!
A little update though - various tests yesterday including liver MRI - results are that I have seven tumours, largest is 3.4cm. This may mean microwave ablation for the first session which will take place later today. Just want these cuckoos in the nest out of the way!
Sorry I missed Max's reference to me in the earlier posts.
Just give me a hint as to your name and location and I'll message you on Fab.
Isn't life difficult without PM? lol
Hi Gill - just wishing you all the very best for the procedure today, I hope it all goes well and you recover quickly. I am off to London in the morning for chemo on Friday but will hopefully be able to log on at some point so will keep an eye on your thread to see if you have posted. Thinking of you x