Just wondering if anyone else’s onc and surgeon have had a different opinion about treatment…
I am due to have my second AC tomorrow. Since the first, a lymph node has appeared in the clearance site. Both onc and surgeon are assuming it is cancerous, although the needle test showed normal cells (apparently it’s not reliable for negative results, only for positive results!).
The onc thinks I should continue with chemotherapy and use the lump as a marker of how well it’s working (although he doesn’t know for sure it’s cancer, so if it’s a normal node that’s simply traumatised by surgery, it might go down anyway). If it doesn’t go down, they can’t change my drugs until I’ve given birth in Nov/Dec anyway.
The surgeon thinks I should have it out and has said go ahead with chemotherapy tomorrow, cancel the next one and has booked me for surgery on 6th September.
What shall I do? OH says let them come to a professional decision together, although I will have to ask them to confer because at the moment, they’ve left the decision up to me. What do I know!!
My instinct is to get it out asap. It’s not a reliable marker because we don’t know for sure it’s cancer. But then again, the onc has been fantastic and I really don’t want to p*ss him off by not going with his advice. He’s really put himself out for me, fitting me into clinic at the last minute, missing a meeting to see me, conferring with 5 other oncs on their ‘onc forum’ (!) and telling me they all agreed to leave it be.
Does anyone have anything to add that might be helpful?? Any similar experience? I’m so confused.
Hi Jane
As if you don’t have enough to worry about. My gut reaction if you had time was to get a second opinion on your whole case as there seems to be quite a few differing opinions. If he has already consulted with others as you said then maybe you could speak to them too and get a clearer idea. If there is not time I would have to say the onc’s are the cancer doctors and now how cancer works so I would have to trust them in treating you. I totally understand the desire to get it out, but women regularly have their chemo before the lump is removed and this does show how effective the chemo has been. They also don’t know their lymph involvement until after. So it is obviously not an unusual situation ton to treat cancer while it is present… If you had the lump removed after the baby is born and it is cancer they may give you extra chemos and if it is not cancer no harm done. One poster said a while back just because that chemo did not work brilliantly on the tumour does not mean it is not working on the other stray cancer cell and tax after the baby is born my mop up the extras. this is such a hard decicision for you. Those are just my thoughts. Hope I have not confused you more. Debx
I’m inclined to agree with Deb. The only other thing I would add is that it really isn’t fair of them to leave the decision up to you. That kind of happened to me prior to my bone mets diagnosis, and delayed the eventual diagnosis by some months. Wouldn’t have made a difference to the outcome, but it would have avoided several months of increasing pain. Do you feel confident enough to say to one or both of them that you don’t feel able/qualified to make the decision and that they - as the professionals - should really be coming to some agreement between them in your best interest.
sorry you have more sh*t to deal with, yet again. I tend to agree with debs and alison, for the same reasons. You never know, having a marker to track the chemos progress could prove to be the best thing you have done.Having it out now and confirming its canceris not going to make you feel that much better as you will still be thinking it was in the nodes,has it spread?And you cant have your scans til after baby has arrived.It popped up despite 1 session of chemo and you will no doubt use that to decide in your darker days that it means the chemo isnt working. But one session isnt the be all and end all, plus they hadnt measured it to check if the chemo did work. Why would we have surgery and then 6 chemo sessions if they could tell from one session that chemo wasnt working?
But having the chemo and using it as a marker could prove to be very positive. If the chemo is working, it will give you a big boost. If it isnt, it will give you and your oncologist information to tackle this little B****erwith different chemo.
Also i think the onc is the one to follow as cancer is his speciality, unlike the surgeon. Ask your surgeon any other question about cancer and i bet he would defer to the oncologist. Surgeons look at problems through surgical eyes,and tend to go for surgical solutions.
Why not use the time to canvass a second opinion, or perhaps your oncologist wil let you see a summary of the opinions of his fellow oncs. If you see how his query was framed and how the responses were written, it may make you feel more at ease? Good luck,
They are both highly specialised in their own fields, but if there are differring opinions as to the way forward with treating/dealing with the cancer, then the onc wins hands down. Or to put it another way-if there is a query about the surgery, would you believe your onc before your surgeon? Somehow I think not!
I don’t know if you’ve spoken to anyone on the helpline here but they are here for you if you would like a chat about your concerns. Lines are open again in the morning at 9am until 5pm, the call is free.
One thought did occur to me and this may be totally unfair- if so ignore it but your surgeon may simply want to put right his mistake in missing something in the first place. I know ultrasounds etc should have picked it up if you had them. But as has been said surgeons offer surgical solution. Take care debx
Hi Jane,
This is so tricky. They’ve left the decision up to you because they just don’t know. There are so many unknowns with cancer, but a sugeon will think like a surgeon and the oncologist will think like a medic. Ultrasound images show was strong chacterisitics of malignancy. i.e. If it looks malignant, it probably is, but they can’t be 100% and will always lean towards the side of caution. Same with your FNA, some fail and they’ll always be safe. The facts are, you need to have it treated and there is not enought research to say definately which way is better. I think you need just decide, do you want to delay your chemo and have surgery OR delay your surgery and have chemo. Either was, you’ll get the right treatment. Surgery and Chemo argument is a bit chicken and egg.
Thank you all so much for your advice and thoughts.
I’ve just come back from AC no.2 and had a quick appointment with onc just before. I am now convinced and we’re going with his advice of leaving the lump for now. He said there was probably much more risk of micrometastases already elsewhere in my body that need dealing with than spread from this lump, which may or may not be cancer anyway. He gave me some stats (cos I asked) of 60-80% of cancers shrinking with chemotherapy, around 20% staying the same and single figures growing. I think what he said boils down to this being my last chance to get rid of any microscopic cancer cells in my bones/brain/liver/lungs before they grow and kill me. Any microscopic cells released from the node should also be zapped by the drugs.
I feel bad going against the surgeon’s advice but if they can’t agree, it’s not my fault! Maybe the lump can come out after the baby’s born and before the tax.
Oh sh*t this is such an endurance test and there’s so far to go.
Thanks again, your advice was pretty unanimous to go with the onc and I think you’re right. xxx Jane
I think the fact that your onc conferred with 5 other oncs-and they all reached the same conclusion-was a hard fact to ignore/be overriden by 1 surgeon. Good luck with the treatment-glad you are going ahead secure in the knowledge you have made the right decision.
I would be very inclined to go with the oncologist. He is the specialist in treating cancer. The surgeon is the specialist in cutting out lumps, whether they are cancerous or not. Cutting out a lump because it may be cancerous may well not be the best treatment and if your oncologist has consulted many of his colleagues who are all in agreement, I would most definitely in this case, go with his advice. He will have good reasons for it.