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so confused

20 REPLIES 20
kittyhola
Member

Re: so confused

thank you ladies and hope you are both doing well on your road to recovery x

josyemarie
Member

Re: so confused

I was dx with triple neg before Xmas'03. It was a particulary aggressive one with an awful lot of vascular invasion and spread to my nodes.I took whatever treatment they could throw at me, then if it did come back I couldn't blame myself! I wasnt expected to finish chemo without it returning. But it didn't and I'm still ned 6+ years later.
Josie x

Brad_Pitts_wif
Member

Re: so confused

Hi Kittyhola,

whilsdt not TN i was changed from Grade 2 to stage 3 BC after recent WLE. i have had chemo before surgery as i have invasive lobular cancer, one of the hardest to pick up. Chemo whilst not pleasent has been dooable i think without it i woulds be in a more serious predicament because I aslo had high grade DCIS, the chemo melted away these tumours. I have 2 children aged 5 and 2 and whilst there have been days when getting out of bed was hard i have had to for them. i finished chemo in june and whilst i still find that there are days when i am fatigued we justy get on with it, please ask your sister to really consider the pros and cons of not going for chemo. like i said not TN but chemo was given to me and i don't regret it.

Louise

kittyhola
Member

Re: so confused

Me again guys - sis has been left with the decision as to whether to go for chemo, apparently it's up to her but the hospital have to offer her the option. How is she supposed to make the decision and why aren't there medical staff prepared to advise? She was given stats of 80% non reoccurrence if she does nothing, 90% with radio and an extra 5.8% with chemo. The BCN gave her these stats but couldn't advise what to do. She doesn't know who to speak to next. She will do radio but is v afraid of chemo and says she will take a year to recover from it.

1dayatatime
Member

Re: so confused

Hi Kittyhola,

I'm sorry your sister and you are having to go through this scary journey, take it one step at a time and you will get there.

I am 43 and was diagnosed in November last year with Grade 3, Stage 3b (spread to nodes and skin of breast), Triple neg bc. My lump at diagnosis was 15cm (!!!!) so I had chemo first, then mastectomy and axial node clearance (as at least 4 nodes involved at diagnosis), radiotherapy and then more chemo.

I had my last chemo yesterday (yay!!!) and providing I recover from that without complications I am now finished with treatment and will just be having 3 monthly checkups.

Chemo is scary but doable, the thing I would like to stress is that triple negative breast cancer generally responds very well to chemo (often better than other types of bc) and as there are no hormonal treatments available it can be a very important part of treatment. As an example my tumour shrank from 15cm to 4cm after 4 cycles of chemo and most of that shrinkage occured after just one dose. The chemo also cleared all signs of cancer from my lymph nodes. I stopped chemo early to have surgery as the tumour had reduced in size enough to be operable. My oncologist was undecided as to whether more chemo was neccessary after I finished rads but I was happy to have 3 more cycles in order to give myself the best possible chance for the future. Please encourage your sister to think carefully about her decision and not dismiss the benefits of chemo due to fear. If she would like to talk to me about it then please send me a pm and I'll give you my email address.

Good luck to both of you on the rollercoaster ride you are now on.

Linda
xxx

karenap
Member

Re: so confused

Hi somerset lady,
I remember talking to you and hope your tests go well too - they must be due!
Its been one hell of a rocky ride this last year hasnt it but at least now we can tick of the first year - onwards and upwards!
karen xx

kittyhola
Member

Re: so confused

Hi guys, thanks for latest postings. She's back at the hospital (ipswich) tomorrow to talk through treatment plans. I'm on here today trying to find a thread I saw somewhere about not choosing chemo - but I can't find it. The way she was talking today was as if she might not go the chemo route which worries me but at least tomorrow she will meet the BCN and hopefully come away informed enough to make the best decision. She is taking someone with her so that's good.

somerset_lady
Member

Re: so confused

hi kittyhola
i too am another triple negative, dx last september, had stage 3, and had wle, tac chemo, and 4 weeks of radiotherapy. I agree that it would be better if your sis could take someone with her to appointments, I found I had so much going on in my head as soon as we left the room I had forgot what they were saying!
I am living in somerset so if your sis is near and wants to meet for a chat we could arrange that.
well done to Karen, we were dx about the same time and i have spoke to you before in the past, glad your first mammo went well!
We are all here for the same reason and the support from this site and information has helped me through some bad days and sleepless nights x

karenap
Member

Re: so confused

Dear kittyhola,
Good luck to your sister and hopefully she will find the support that she needs, either here or elsewhere.
Just to let you know that I am 53 and was diag. with TNBC Grade 3 Stage 2 a year ago. had 2 surgeries to remove lump, chemo and rads and earlier this week had my first annual mammo and check up and all is clear. Same advice really as from everyone in that try to keep positive, throw everything they offer at it and fight it! good luck to her and I am very happy to talk to her if she would prefer a one to one.
Karen

Silver10
Member

Re: so confused

Hello kittyhola,

I also have triple negative breast cancer. I was dx in March 2010, with stage 2, grade 3 cancer. I was told that grade 3 was quite common in younger women, I am 41, and was told not too worry about that too much!!!. I also had a micromet of cancer in one of my lymph nodes. I have had a mastectomy and am currently going through my chemo, I have now done 5 out of 6 treatments and will also be having radiotherapy.

I personally am trying not to read too much into all the statistics regarding tn bc. I know there is higher chance of early recurrence but remember that ladies with hormone positive breast cancers remain on treatment for quite a number of years after treatment finishes for tn ladies and this must have some skewing effect on the recurrence statistics. I cannot change what has happened to me and I can't change what type of cancer I have been diagnosed with - it's not going to stop me enjoying my life as much as I can. The breast cancer journey is a roller-coaster journey and you don't always get to choose when the black times are, but you can make the most of the good times too.

Perhaps your sister could come to the forums and just read the posts. It took me over three months of visiting the site before I actually signed up, but I found it very helpful just knowing that there were others going through the same as me.

Good luck to her for her next appointments.

Sil

kittyhola
Member

Re: so confused

Thank you to all - this forum is amazing. I don't know if I can get her to come on but I can't tell you how much it's helping me to become informed. Thank you Theresa for explaining about grades and staging and the pros and cons of the other types of bc- what a steep learning curve this is. Val thank you for your really kind offer. Sorry if I've missed anyone. Sophie x

rhapsodyangel
Member

Re: so confused

Sorry to hear that your sister has been diagnosed and is hving to go through all this... It sounds like you are a great sister to her and I am sure you are going to be a big support to her whilst she goes through all this...

When we are first diagnosed the medics take into account lots of factors like size of the tumour, it's position, whether there is more than one lump (multifocal, and if it is receptive to certain hormones - as you have already discovered your sister's is triple negative... They also consider grading and staging which are two different things - grading is based on how different the cancer cells are from normal cells and come on a scale of 1-3 so your sister had grade 3 cells which means they are faster dividing and are more common in younger bc patients... Staging is used to describe how far the cancer cells have spread so stage 1 would be a small tumour, stage 2 larger but still contained in the breast, stage 3 is when cancer cells have been found in the lymph nodes or the skin of the breast, and stage 4 is when cancer has spread to other organs in the body - it is often also called secondaries or mets on this site...

With regards to different types triple negative, hormone positive and herceptin positive it is almost abit of swings and roundabouts... Yes tn statistically has a larger chance of recurrance in the first few years - but after 5 years that balances out and current thinking is if you reach 8 years with no recurrance it is very unlikely to come back... I'm hormone positive which means I'm on hormone treatment for at least 5 years which comes with loads of side effects and unfortunatly can come back at any time in the future even 10, 15 20+ years down the line... Herceptin+ used to have a poor record but nowadays herceptin is working very well - but herceptin can cause heart problems so patients receiving it have to have regular heart scans... so really all types have their problems and benefits...

Do mention the helpline to your sister it is open on saturday mornings and is manned by nurses as well as trained volunteers - I know alot of people like the fact they do not have to feel "rushed" as they do if asking their bcn questions...

Hope your sister hears what her treatment is soon - things really do get better once you know what is happening...xxx

Theresa x

sandra4
Member

Re: so confused

Hi Sophie, So sorry to hear about your sister. The helpline here is open on a Saturday until 2pm, if that is of use to your sister, for future reference.
Also is your sister able to come on the forum herself, it might help her if she has any worries or questions 24/7.
Has she any close friends that could go with her to appointments?
Sending her my love and hugs
Sandra xxx

horace
Member

Re: so confused

Should have said the planning meeting isnt scary but its a lot to take in on your own so it would be good for her to have someone along and to write down her questions [and the answers].
Mine was 2cm grade2.
Vx

taxi73
Member

Re: so confused

the reason it's a grade 3 is TN is an aggressive tumour...forgot to add that

horace
Member

Re: so confused

I am triple negative-it is slightly more likely to recur in first 3 years after dx and most unlikely to come back after 8 years.It is excellent that it is not in the nodes.I was dx in 2006.If your sister would like to talk to me just pm me and we can arrange a way to chat or you can relay questions.It is scary but it can be done.
Love Valx

taxi73
Member

Re: so confused

hi kitty
sorry to hear about your sister...i was scared when i found out i was TN too.
It is true that TN may come back quicker but it isn't guaranteed to.
Throwing chemo at mine followed by radiotheraphy actually gives me an 81% chance of it not recurring within 10 years...so not too bad.The chemo itself is giving me a 12.5 % chance of it not recurring so definitely worth having.

my tumour was 2cm and no node involvement..so can see her chances being about the same.

it's scary with TN as you don't have the back up of hormone tablets..but these have their own problems as well.

hope this is of some use to you and your sister ...only had my 1st chemo the other day but can totally relate to how she is feeling.

kittyhola
Member

Re: so confused

Thank you guys. One of the things she's finding so hard is having noone to speak to at the weekends. Her appms keep falling on thursdays and fridays and then when she looks up the support numbers over the weekend when she needs someone they are closed. I've told her not to accept friday appms anymore! Tomorrow she's going to try and find the right people to talk to and this afternoon she's found a neighbour who was a cancer nurse for 18 years so that might get us through today. I think once she's a little more informed she'll be a lot more together - she just couldn't take in the info on friday.

How scary is the mapping scan? At the moment she's going on her own but I'm thinking whether I should go with - though I have a family up here in the North West and she is a 5 hour road trip from me. There is a husband who seems to have taken up sleeping - this a normal reaction?

I feel sleep is a luxury now 😞

Lovely to hear from you both and hope the triple neg ladies do reply. Love to all, Sophie xx

Ruby1
Member

Re: so confused

HI Kittyhola

I'm so sorry to hear about your sister. Although my breast cancer was not triple negative, I know quite a few women whose is and they're doing well. There are also quite a few triple negative ladies who I'm sure will respond back to you. They often throw everything at certain types of cancer and when I had my treatment they explained that they were over treating me i.e. belts and braces - chemo isn't great but hopefully it'll blast the horrible stuff and get rid of it ensuring it doesn't come back.

I know it's really hard for you but sounds like your sister is in good hands.
Hugs
Ruby xx

Janet_BCC
Member

Re: so confused

Dear kittyhola,

I am so sorry your sister is going through such a tough time. I'm sure other forum users will soon be along to offer support.

Do you think it may help your sister to talk to someone on our Helpline? They are open weekdays from 9.00am-5.00pm and on Saturdays from 9.00am-2.00pm. The number is 0808 800 6000

Very best wishes

Janet
BCC Facilitator

kittyhola
Member

so confused

Following a routine mammogram my sister had a WLE and they said the margin was good and no lymph nodes involved. We understood it had been discovered v early and told she wouldn't have even felt a lump for 3 years. But now things seem to be getting serious. They said she is TN and it's a grade 3. How can it be great 3 when it's not in the nodes? She's been advised to have chemo which has come as a massive blow to her. TN seems to be the hardest to treat by the sound of it and quite rare - 15%? Can anyone send me any positive news, we just don't know whether it means she's more likely to get a re occurence because its TN. At mo she is in shock and not reading anything so I'm her only source of info and I'm at the other end of the country so can't even go to appm's with her.