decisions.....decisions

jan61

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  positive

Proliferation 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

kezmusc

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

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

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

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

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

@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

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

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

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

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.

arpie

Yes, as @sister says - it sounds like your BC nurse is taking a VERY proactive role!

And record any conversations you have as well, @jan61 especially with your surgeon & oncologist etc.  That way you can go back over it in the privacy of your home & digest exactly what was said.  With our minds 'abuzz', it is really easy to forget what has been said.  Just use your phone - you can download a voice recording app for free ..... Just put it on the desk & hit record.

Whereabouts are you Jan?  City/town/state?   It sounds like you are rural & live away from major services?  We may have members nearby who are familiar with any services in your area?   I am rural in NSW and have access to subsidised travel & accommodation when I need to go to Sydney & Port Macquarie for my checkups - there could be similar services for you too.  I just have to get a form signed by the Health Professional each time I go & submit it & they put 'petrol money' into my bank account.  Ever $ helps.

All the best, take care xx

Doin'it

My bc nurse called me the day prior to seeing my surgeon. Told me I didn’t need chemo. I was so excited I rang all my family & told them. Wrong!!!! I certainly did need & have chemo 😢

kmakm

Hi @jan61. To answer someone so that they get notified, use their forum name with the @ sign un front, like I did at the beginning of this post. 

kezmusc

If you don't like your BC nurse @Jan61.  Tell her you don't need her services thank you very much.  You don't have to have one.  Just means there's no one else to help you with the leg work if you need it or explain things in normal people terms if you get bamboozled by medico language.

Generally speaking the BC nurse is there for support and to be your advocate. Say you chose not to have surgery but the surgeon really says its' the best thing and tries to talk you into it.  She will  (should) go in to bat for your wishes.

They can attend the MDT meetings so they are up to speed with what your treatment plan is and what has been discussed and can give you results if they have spoken with the surgeon and been given the ok to. 

Hmmm, I would really have a double check on the node surgery with your B/S  don't you have two nodes out of 4  positive or did I misread that?  They tend to avoid operating if it's not entirely necessary.

All the best with your decisions.
xoxoxo

jan61

@Doodo that is so very unfortunate. I am a bit worried she has taken one of my fears ( and I have plenty ) and run with it.