So hard to make decisions when you feel like you only have half the information....... far out. Final report is in, I haven't seen it bc nurse has but I didn't try to read it over the table. She contradicts what the surgeon said last Friday. I tend to think she was more accurate....I must admit I saw him as an outpatient last Friday and he was going like the clappers. He did however drain my seroma after a four hour wait and 300 kilometres.I see the surgeon again this Friday after he has presented at the group playfest to hear what the general consensus is about a treatment plan.So hormone positive on all three tumours, HER negative. On the right IDC grade2 9mm, positive sentinel node. ( only 1 of 1 ). Clear margins.Bc nurse tells me the left breast would be counted as 1 tumour? Papillary one ( why did she mention micro papillary....) 17mm clear margins. the other is IDC 33mm . Calling both as grade 2, hormone +, HER -. 2 nodes from the sentinel set of 4 positiveProliferation rate KI67 30 to 35%.How do I decide....... if I don't really want an axilla disection ?......far out Brussel sprout...... I sort of feel mutilated enough thanks. 3 Csections an abdominal hysterectomy and now this....... far out Brussels sprout x 2. I feel like such a hot specimen :(

I don't want to sound like a gloomy old cynic @jan61 but that's what I am, so...Be careful about getting too committed to your surgeons opinion on what is going to happen once he's finished slicing and dicing. They are notorious for putting their two bobs worth in and prognosticating about what other specialists are going to recommend--and they get it wrong all the time. It's happened to me twice and others here have reported the same thing. Its most infuriating. If your oncologist picked up a scalpel, your surgeon would have a conniption, but that doesn't seem to stop them having an opinion about chemotherapy.Take his advice about surgery if you trust him, but you won't know for sure what the oncologist will recommend until they see the results. Good luck and wishing you all the best for a soft landing. Mxx

@jan61 I agree with @Zoffiel. The oncologist is the CANCER specialist. The surgeon just does the slicing and dicing, but they see themselves as God. The woes I've been caused by my surgeon and my bc nurse and appalling communication! These people need to learn to stay in their own boxes when making recommendations, and actually listen to each other in the team meetings.

Yep, surgeons don’t know always know about the various AI meds and often mention the one they’ve heard of the most .... Tamoxifen. Mine did! When I saw my Onc, Tamoxifen was never even mentioned, except by me!!All the best for your ongoing treatment, @jan61 xx

@jan61...yeah, the surgeon is the butcher who cuts the meat, and the oncologist is the Head Chef, who knows what herbs and spices to use, in what quantity and sequence. This chef also knows which method of heat to use when cooking, and for how long. The chopper upperer is not the most important person in the preparation of the meal.

I doubt if I can help much but ... I had 8 or 9 really suspicious looking nodes in ultrasound. Biopsied one was positive. So axillary clearance. As it turned out, only the biopsied one was positive, the other 16 removed were OK. The surgery itself has never been a problem, no scars underarm, no mobility problem, but I was one of the approximately 36% with node removal who got lymphoedema. But still no regrets - it was a fair call on the evidence. Agree with @kezmusc - get all the information you can so that you can decide in the best informed manner possible. Best wishes.

decisions.....decisions | Online Network

kezmusc
Member
7 years ago
Hi @jan61,

It just stinks we have to make all these decisions about which bits to chop, nuke, poison and radiate.

Make a list of questions for the surgeon and don't leave without your answers and copies of you reports. He/she will have all the info after the MDT meeting.

With nodes positive they are probably going to recommend the dissection I would imagine. Those nodes are the stinky things highway to the rest of your body so you really don't want to leave them there.
Mine was stage 2 grade 2 and once the dissection was done there ended up being 5 out of the 24 that were positive and they were breaking out of the lymph nodes into the surrounding area. Couldn't tell that until it was out.

All the best with your decisions lovely.

xoxoxox
Afraser
Member
7 years ago
I doubt if I can help much but ... I had 8 or 9 really suspicious looking nodes in ultrasound. Biopsied one was positive. So axillary clearance. As it turned out, only the biopsied one was positive, the other 16 removed were OK. The surgery itself has never been a problem, no scars underarm, no mobility problem, but I was one of the approximately 36% with node removal who got lymphoedema. But still no regrets - it was a fair call on the evidence. Agree with @kezmusc - get all the information you can so that you can decide in the best informed manner possible. Best wishes.
Zoffiel
Member
7 years ago
My first sentinel node procedure was negative in 2006, fast forward 10 years I had a local recurrence and 6 out of 15 nodes were corrupt. Of all the procedures I've had, the ax clearance has been the most challenging but it's probably bought me more time than anything else.
The pressure in your situation is horrible however if you don't decide today, you can decide tomorrow. Or next week when you've had a bit of time to process what you are learning and ask more questions. Leaving it until next Xmas would be unwise. Hang in there and ask more questions. Always, ask more questions. Mxx
Sister
Member
7 years ago
As the others have said, the nodes are the cancer's way out to the rest of your body - the bugger's on the move. Originally, all tests showed that my nodes were clear prior to surgery but the post-surgery path test showed otherwise - 3 were compromised. I had a further 5 removed at 2nd surgery but these were clear. As with @zoffiel, the axillary dissection is what has caused most grief, physically, but hopefully it's stopped the migration
jan61
Member
7 years ago
I think I have calmed down a bit today. I also think my head is hurting from the damned half information. I don’t know what is what. What happens if I don’t like the breast care nurse? There are no alternatives out here but the royal “ we” is giving me the shits. I just worked it out. I am an insanely private person. I don’t like others having access to my information/results before me....and not sharing them honestly.... unless of course it is the Dr.
Blossom1961
Member
7 years ago
@jan61 I feel the same way. I hate having the BC nurse looking at my results and not sharing them. I get it isn’t protocol, but then she shouldn’t be allowed to see them. Frustrates and annoys me. Doesn’t help that I don’t gel with her but I made it to the end of chemo with only losing it with her once so I guess that is a bonus.
Brenda5
Member
7 years ago
I didn't get a choice on the axillary surgery. I went in for the results and the surgeon had already booked me in for further surgery. He sat hubby and I down and then all 6 foot of him towered over us like naughty kids while he told us of my further surgery required. I was marched off to do admittance paperwork immediately even though the surgery was a week away. My breast nurse was off on holidays or some seminar and I didn't have this forum at the time. It was a dark day.
LIttleBlueWren
Member
7 years ago
Hi @jan61
I would describe myself as 'an insanely private person' as well! I have refused to tell many people, including family members that I even have BC. It is none of their business.

My surgeon gave me copies of all of my results without me asking for them and never did I have a conversation where anyone other than my surgeon or oncologist discussed results with me.

Personally, I did not feel the need to have a BC nurse, although they popped in to see me regularly while I was in hospital and they were all really lovely and I enjoyed chatting with them. One of them even came back and distracted me while my drains were removed because I was worried about the pain level (of course it ended up almost pain free and I felt like a dill) Why are the nurses getting your results and then discussing them with you? I would think that your surgeon and maybe oncologist should be the only ones to do this.
Best wishes
jan61
Member
7 years ago
Thanks people :( I haven't worked out how to reply individually lol.

I know she ( as in the BC nurse ) is doing her job but really she isn't any more likely ( in fact she is less likely ) to understand the pathology than I am and bugger me it is MY pathology.

I am going flat. My choice. My decision. I don't want the free bra... but I had to be measured and its ordered. What if I was going out and I " needed " to wear something? I don't need fake boobs. If you do thats fine but I don't. Looks like I am getting them tho... not even in the correct size. far out Brussels sprout .

I will probably do the axilla direction if " they " feel it benefits me. Everything I have read says in " early " BC its ok to forgo it post sentinel removal. I don't think I am early BC tho. I would rather have had the answer to that question than try on the bra.
Sister
Member
7 years ago
Take it then donate it. There's women out there who can't afford them.

It sounds like your nurse may be taking her role just a little far. I've never really had a bc nurse just 10 minutes with one at the hospital so I don't know much about them. However, I would think that her role would be to help you understand it and possibly help to formulate questions but definitely not to replace the doctor. Hard to know whether she's overstepping or the doctor is offloading. It shouldn't be your problem though - get your questions ready and have them written down so that when you see the surgeon, you're ready.