Hi lovely ladies, So just wanted to see if anyone had any thoughts. I saw the oncologist for the first time on Thursday and she has given me the following results....cancer all removed, clear margins, no lymphnode involvement, Grade 3, TNBC. She then advised due to the above and my age, 36, that she would like to hit me hard with chemo. I was a little in shock! I thought ok they got it all and I will have chemo but I didn't expect t her to say hit it hard. She has given me the following treatment plan....4cycles every fortnight of AC and then 12 weeks of Taxol. She did mention a treatment plan of less time but emphasised due to my age and the TNBC she felt I needed to do the harder one? I am able to ponder over the weekend and get back to her on Monday. As I said she was really lovely and not pushy at all. I just am a little confused, I can't make up my mind in a sandwich shop, let alone pick what treatment plan I want. And hey wouldn't we all love to just pick the easier option if it was really that easy? My husbands reaction to her diagnosis tells me the harder plan is the right one but I really value all you ladies offerings experiencing this in real time!!!! So is anyone able to offer anything on the below? - I have noticed a lot of TNBC ladies are on FEC? Is there a reason as this wasn't offered to me. - Can anyone offer there experience good or bad with the port. I'm thinking of it, as I hate needles. I know I'll have to get over that but it seems a better option if I hate needles? - I did ask why, what would you do, what if I don't? Side effects etc is there anything I should really need to know. - I am thinking of going Private patient in public hospital. She tells me I will get the same treatment. The only difference is in the private I will pay for my meds and excess each time if I have one and the consult , but if I go through the Public I will pay for the chemo drugs and that's it. Is there any pros and cons to this or anything I should know? Thank you so much for helping me out, I just need some help. I am staying strong and completely positive but these decisions are really draining.

Hi I'm TNBC but did 6 rounds of TAC not FEC. As i had lymph node involvement, chemo wasnt a choice but Given the agressive nature of TNBC i think its a good idea. I have strongly taken the preventative side, so i've had both breasts removed, ovaries out and radiotherapy. I made all of these decisions so i would have no regrets if there's a recurrence. The worst thing for me would be to think that I should have done something e.g. The radiotherapy was done after i sought a second opnion. Good luck making your decision. Maybe you could discuss further with your oncolgist - i'm sure if she's suggeting chemo its probbebly the best path. Sorry i dont know about ports or the public/private questions. Michelle

Hi Paula, Thanks so much for your help. Your decision to have the mastectomy was that yours alone from research or was this proposed by your medical team due to your diagnosis ie lymph node or was it based on statistics of reoccurrence. I ask this as no one has ever mentioned to me about the need to have it off. I will let you know my diagnosis- lumpectomy, invasive ductal carcinoma 1.6cm, grade 3, no lymph involvement stage 1. I am seeing the oncologist tomorrow and will choose my treatment plan which I am going with the harder hitting one but again many of the TN ladies seem to be on the FEC chemo. Was the AC and then Taxol offered to you. I am in sydney going through St George Private at present. One other thing is the oncologist said it works like this regarding hospitals- if I go private I do have health cover I pay for the excess if I have one, consult fees and medication for side effects. If I go through St George public as a private patient I pay for the chemo drugs and that's it but the treatment is no different? I know you said you didn't have to pay for anything in the private for chemo but did you have to pay for meds. I had heard that it can cost up to $10000 or more in the private for chemo. Hence my concern. I know money shouldn't be a concern when it comes to health but it is overwhelming I have 3 little ones and I just don't want the financial burden. I really appreciate your advice. You are amazing to be able to pass on your wisdom. It's incredible how much peace I have gained from joining BCNA. Xx Sam

I also have TNBC no lyph node involvement, but very agressive, grade 3 and stage 1. I had a mastectomy and 3 X FEC and 3 X Docetaxel. The Docetaxel was difficult, but I have now finished chemo and going in to hosital tomorrow, to have the right breast removed and having spacers put in ready for implants in 3 months. I finished chemo in April this year. Listen to your oncologist, I went private, my medication cost no more than $500 and I only ever paid about $70 out of pocket for oncologist visits prior to each chemo. The tests leading up to the operation, scans and MIR were a bit more costly but nothing like the $10k you mentioned. My oncologist also wanted to hit me hard with chemo but also told me TNBC responds well to chemo, I am glad I followed his advice and I am looking forward to the rest of my life, cancer free. All the best

Hi Samantha, My diagnosis was similar to yours - smallish lump (18mm), clear margins, no lymph node involvement - but I am 56 (55 at time of diagnosis)! I decided on a bilateral mastectomy as I am a real worrier and I didn't want to spend the rest of my life walking around feeling my left breast for other lumps. I also was recommended significant chemo - 3 rounds of FEC and 3 rounds of Docetaxel, but no radiotherapy as I didn't have any breast tissue left and no lymph node involvement. I had the FEC, one round of the D then reacted so badly ended up with 6 weekly cycles of Taxol instead. As I understand it, AC is a valid alternative to FEC and weekly Taxol is just as effective as 3-weekly Docetaxel. I am just recovering now and getting stronger each day. I took The oncologist's advice and hit it with everything although it was really tough, physically. I also wanted to be able to know that I had done everything in my power to prevent a recurrence. If it does recur, I know that this is just bad luck, not because I wimped out on treatment. Having said that, everyone is individual and has to do the right thing for them. The really tough thing about all this is that there are no absolutes - no right or wrong, just what works for you and seems to be the right decision on the day, with all the information you have at the time. Not sure about costs in the public system - I went private and after I paid my excess ($250) once in a year, all the chemo treatments were covered. That is because they admit you to hospital for it, although you are only there for a few hours. I would have paid $50 - $100 for additional meds to cope with the nausea and other issues, but that is it. Be guided by your instinct and advice from the Onc - they have seen it all before and know what to do. Hope you fare well. Look after yourself. Alison

Decision Time | BCNA Online Network

20 Replies

Jitka_Ilekovic
Member
11 years ago

Hi

I came across this blog today and my story is very similar . I was diagnosed last year at the age of 36

I have finished my treatment Feb this year and found it ok compare to others. I was wondering if you any of you out there that only had lumpectomy done ever wonder if having a mastectomy would be an option in the future to rule out or give ourselves a better chance of no reoccurrence?? I’m faced everyday now wondering if that is something that I should do just in case. Even though my oncologist gives me really good chances of no recurrence. Thanks for your input

Jitka
LeonieV
Member
11 years ago
Hi Samantha,

So sorry to hear about your diagnosis. As you can tell - there's lots of ladies in similar psotiions on this website. I was diagnosed in May this year, TNBC, grade 3 with lymph node involvement. I've had a lumpectomy and aux clearance (only 1 of 14 nodes involved). And am now doing chemo. 4 ccyles of AC (every fortnight so AC Dose Dense), followed by 12 cycles of Paclitaxel (interspersed with 4 lots of carboplatiunum every 3 weeks). The oncologist in Perth wanted to hit me hard as well - I'm 37 - and so she's taking an aggressive approach. I guess that is good in terms of life to come! I've had my second AC cycle and haven't enjoyed it. But its not as bad in some ways as I feared. Its hard, but you can get through it.

Good luck with your decisions. I don't think i was really given a choice - I was recommended that this would be the best course of action to keep me cancer free. But its good you get to have a bit of a decision.

Good luck with everything,

Le.
Dotsey
Member
11 years ago
I am 44 years old and in January was also diagnosed with TNBC Grade 3, Stage 1. The first couple of weeks are very overwhelming, once you decide on your treatment plan you will feel much better. I had a lumpectomy, 16mm lump, at no stage was a mastectomy suggested and I took both my surgeon & oncologists advice because they are the experts. I also had clear margins & no lymph node involvement but due to my age my oncologist recommended chemo, 3x FEC & 3x Docetaxol. Chemo was ok because I think I was expecting worse. I was lucky & didn't have too many side effects, but everyone is different. I drank lots of fluids & made myself eat. I was a private patient & it cost me around $450 for chemo & medication. I am currently undergoing 20 rounds of radiation which is very tiring because I have a 205km round trip each day for treatment but I'm now counting the days until I'm finished! For 6 months it feel like my life has been on hold. Good luck with making those hard decisions, whatever you choose will be right for you. :)
vicki63
Member
11 years ago
Hi Samantha

I was diagnosed last October with TNBC My lump was 40 mm and a grade three. I had a lumpdectomy (large breasts) which reduced my left size by about a cup. I had one lymph node involved just. So I had four rounds of Doxy and clyphos ( I just say D&C ) which I tolerated ok. I then had 35 sessions of radiotheraphy. I am 50 so I suppose the younger you are the harder they hit it. I went public all the way and had no problems. I have heard of one lady being out of pocket by a lot. I would ask your private health cover How much they will reimburse. I think you have to do what you feel is right for you. Our cancer is all different and that means our care will also be different. I say ask questions write things down and make sure you are doing what you feel comfortable with. Wishing you the best
AlisonMew
Member
11 years ago
Hi Samantha,

My diagnosis was similar to yours - smallish lump (18mm), clear margins, no lymph node involvement - but I am 56 (55 at time of diagnosis)! I decided on a bilateral mastectomy as I am a real worrier and I didn't want to spend the rest of my life walking around feeling my left breast for other lumps. I also was recommended significant chemo - 3 rounds of FEC and 3 rounds of Docetaxel, but no radiotherapy as I didn't have any breast tissue left and no lymph node involvement. I had the FEC, one round of the D then reacted so badly ended up with 6 weekly cycles of Taxol instead. As I understand it, AC is a valid alternative to FEC and weekly Taxol is just as effective as 3-weekly Docetaxel. I am just recovering now and getting stronger each day. I took The oncologist's advice and hit it with everything although it was really tough, physically. I also wanted to be able to know that I had done everything in my power to prevent a recurrence. If it does recur, I know that this is just bad luck, not because I wimped out on treatment. Having said that, everyone is individual and has to do the right thing for them. The really tough thing about all this is that there are no absolutes - no right or wrong, just what works for you and seems to be the right decision on the day, with all the information you have at the time. Not sure about costs in the public system - I went private and after I paid my excess ($250) once in a year, all the chemo treatments were covered. That is because they admit you to hospital for it, although you are only there for a few hours. I would have paid $50 - $100 for additional meds to cope with the nausea and other issues, but that is it.

Be guided by your instinct and advice from the Onc - they have seen it all before and know what to do.

Hope you fare well. Look after yourself.

Alison
AlisonMew
Member
11 years ago
Hi Samantha,

My diagnosis was similar to yours - smallish lump (18mm), clear margins, no lymph node involvement - but I am 56 (55 at time of diagnosis)! I decided on a bilateral mastectomy as I am a real worrier and I didn't want to spend the rest of my life walking around feeling my left breast for other lumps. I also was recommended significant chemo - 3 rounds of FEC and 3 rounds of Docetaxel, but no radiotherapy as I didn't have any breast tissue left and no lymph node involvement. I had the FEC, one round of the D then reacted so badly ended up with 6 weekly cycles of Taxol instead. As I understand it, AC is a valid alternative to FEC and weekly Taxol is just as effective as 3-weekly Docetaxel. I am just recovering now and getting stronger each day. I took The oncologist's advice and hit it with everything although it was really tough, physically. I also wanted to be able to know that I had done everything in my power to prevent a recurrence. If it does recur, I know that this is just bad luck, not because I wimped out on treatment. Having said that, everyone is individual and has to do the right thing for them. The really tough thing about all this is that there are no absolutes - no right or wrong, just what works for you and seems to be the right decision on the day, with all the information you have at the time. Not sure about costs in the public system - I went private and after I paid my excess ($250) once in a year, all the chemo treatments were covered. That is because they admit you to hospital for it, although you are only there for a few hours. I would have paid $50 - $100 for additional meds to cope with the nausea and other issues, but that is it.

Be guided by your instinct and advice from the Onc - they have seen it all before and know what to do.

Hope you fare well. Look after yourself.

Alison
Sandi_Lockwood
Member
11 years ago
I also have TNBC no lyph node involvement, but very agressive, grade 3 and stage 1. I had a mastectomy and 3 X FEC and 3 X Docetaxel. The Docetaxel was difficult, but I have now finished chemo and going in to hosital tomorrow, to have the right breast removed and having spacers put in ready for implants in 3 months. I finished chemo in April this year.

Listen to your oncologist, I went private, my medication cost no more than $500 and I only ever paid about $70 out of pocket for oncologist visits prior to each chemo. The tests leading up to the operation, scans and MIR were a bit more costly but nothing like the $10k you mentioned.

My oncologist also wanted to hit me hard with chemo but also told me TNBC responds well to chemo, I am glad I followed his advice and I am looking forward to the rest of my life, cancer free.

All the best
Samantha_Jane
Member
11 years ago
Hi Paula, Thanks so much for your help. Your decision to have the mastectomy was that yours alone from research or was this proposed by your medical team due to your diagnosis ie lymph node or was it based on statistics of reoccurrence. I ask this as no one has ever mentioned to me about the need to have it off. I will let you know my diagnosis- lumpectomy, invasive ductal carcinoma 1.6cm, grade 3, no lymph involvement stage 1. I am seeing the oncologist tomorrow and will choose my treatment plan which I am going with the harder hitting one but again many of the TN ladies seem to be on the FEC chemo. Was the AC and then Taxol offered to you. I am in sydney going through St George Private at present. One other thing is the oncologist said it works like this regarding hospitals- if I go private I do have health cover I pay for the excess if I have one, consult fees and medication for side effects. If I go through St George public as a private patient I pay for the chemo drugs and that's it but the treatment is no different? I know you said you didn't have to pay for anything in the private for chemo but did you have to pay for meds. I had heard that it can cost up to $10000 or more in the private for chemo. Hence my concern. I know money shouldn't be a concern when it comes to health but it is overwhelming I have 3 little ones and I just don't want the financial burden. I really appreciate your advice. You are amazing to be able to pass on your wisdom. It's incredible how much peace I have gained from joining BCNA. Xx Sam
Samantha_Jane
Member
11 years ago
Hi Paula, Thanks so much for your help. Your decision to have the mastectomy was that yours alone from research or was this proposed by your medical team due to your diagnosis ie lymph node or was it based on statistics of reoccurrence. I ask this as no one has ever mentioned to me about the need to have it off. I will let you know my diagnosis- lumpectomy, invasive ductal carcinoma 1.6cm, grade 3, no lymph involvement stage 1. I am seeing the oncologist tomorrow and will choose my treatment plan which I am going with the harder hitting one but again many of the TN ladies seem to be on the FEC chemo. Was the AC and then Taxol offered to you. I am in sydney going through St George Private at present. One other thing is the oncologist said it works like this regarding hospitals- if I go private I do have health cover I pay for the excess if I have one, consult fees and medication for side effects. If I go through St George public as a private patient I pay for the chemo drugs and that's it but the treatment is no different? I know you said you didn't have to pay for anything in the private for chemo but did you have to pay for meds. I had heard that it can cost up to $10000 or more in the private for chemo. Hence my concern. I know money shouldn't be a concern when it comes to health but it is overwhelming I have 3 little ones and I just don't want the financial burden. I really appreciate your advice. You are amazing to be able to pass on your wisdom. It's incredible how much peace I have gained from joining BCNA. Xx Sam
michellelf
Member
11 years ago
Hi I'm TNBC but did 6 rounds of TAC not FEC. As i had lymph node involvement, chemo wasnt a choice but Given the agressive nature of TNBC i think its a good idea. I have strongly taken the preventative side, so i've had both breasts removed, ovaries out and radiotherapy. I made all of these decisions so i would have no regrets if there's a recurrence. The worst thing for me would be to think that I should have done something e.g. The radiotherapy was done after i sought a second opnion. Good luck making your decision. Maybe you could discuss further with your oncolgist - i'm sure if she's suggeting chemo its probbebly the best path. Sorry i dont know about ports or the public/private questions. Michelle

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