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Triple negative diagnosis

Michelle21
Member

Re: Triple negative diagnosis

@Steval  Yes will do. Did you manage to sleep last night. I remembered I went to my GP for some thing to help me to sleep for the early days. It wasn’t anything addictive or too strong. I used them until I started treatment and they did the job. X

Steval
Member

Re: Triple negative diagnosis

Thank you so much Michelle.

Do keep in touch and let me know how you are progressing with your own treatment.

Steval x 

Michelle21
Member

Re: Triple negative diagnosis

@Steval I cried A LOT in my initial consultations, it is such a difficult time. Try and keep busy between now and your appt. It’s a really good idea to have a list of questions written down, I assume your brother in law will be in the appt with you, again a good idea to have someone else with you. 
Try and get a good nights sleep xx

Steval
Member

Re: Triple negative diagnosis

Hi Michelle,

Thank you so much for taking the time to reply so quickly, it’s greatly appreciated.

I’m dreading another week but hopefully it’s closer to starting treatment. I’m going to prime my brother in law with questions for the onco because I’ll probably be blubbing in the corner. So helpful!!!
Thank you again for getting in touch

Steval

 

Michelle21
Member

Re: Triple negative diagnosis

@Steval This is the place to let out those feelings as everyone here has had those moments and it is terrifying. Try if you can to not get too anxious, I know that is easier said than done and before I started my treatment I felt just like you. 
The good thing is you are in the system and it’s good they are checking your nodes thoroughly. I had a lymph clearance on my right side and although I would have preferred for the cancer not to have been there as long as you do the post op exercises it will hopefully not affect you to much going forward. 

Make sure you tell your onc how anxious you are and explain your fears of it getting worse. I really pushed to start chemo ASAP as once you get on the treatment train you do feel better mentally and can focus on treatment. 

I hope that helps, I really feel for you, I hope you get the answers you want on Wednesday. Xx

Steval
Member

Re: Triple negative diagnosis

Hi Michelle,

Thank you so much for taking the time to reply....much appreciated.

I am having a wobbly evening fretting about everything. My breast is so tender ( too much walking/friction?!) Every time I have an appointment, there seems to be further tests (which of course they have to do) but I’ve naturally convinced myself that the situation is getting worse and worse. I’ve got another ultrasound Tuesday to check an dodgy lymph node which may require all of them being whipped out, then the onco on Wed.  I’m hoping she’ll tell me once and for all what’s going on.  No sleep for me tonight.  I want to chat to my sister but she stresses about me too much as it is. 
sorry, just need to let my fears out tonight.....

Steval

Steval

 

Michelle21
Member

Re: Triple negative diagnosis

Hi @Steval welcome to the forum that no one wants to find themselves on, however now you are here I’m sure you’ll find it a very supportive network of amazing women. 
I was diagnosed in March and my first treatment was chemo and it sounds like you are the same. I’ve detailed my chemo below, have a read and any q’s I’m happy to answer them if I can. 
Glad you are staying away from Dr Google, no good can come of that. This site is great for info, either from others going through it or messaging the nurses here. At least you know it is accurate. 
Re diet/exercise I walk everyday and it is official medical fact that exercise reduces your risk of infection. I couldn’t comment on how much exercise, do what is good for you. I also find walking with friends everyday gives me a purpose to get up every morning and chatting on our walk about normal stuff helps keep my mood up.

I think a healthy diet is always the best policy but always easier said than done! I try to eat healthily as much as possible but I don’t beat myself up when I have word food cravings for the unhealthy stuff. 

Good luck with your treatment and definitely join a chemo thread, they can be really helpful and it would be nice if you and @justine1970 @are in the same one. Let me know how you get on and I will let you know my progress too. X

Hi @justine1970  yes I am also having chemo for 21 weeks, my first 9 weeks were FEC once every 3 months. I had a scan after that and the tumour had stopped growing but not shrunk very much however the infected lymph nodes had shrunk so that’s a positive! After that I started on 12 weeks of carboplatin with paclitaxel every 3 weeks and like you just paclitaxel on the two weeks in between. Weekly is a tough routine although the paclitaxel is easier it feels a bit relentless when you know you are near the end. I’ve  had 3 carboplatins and just had cycle number 8 so only 4 more to go including one carboplatin.

After the first carboplatin I had to have a blood transfusion which wasn’t as bad as I was expecting. Just like having another chemo but no ill feelings afterward in fact the opposite! Blood transfusions are quite common with carboplatins. 

I’ve still kept up walking everyday some days 6 miles. 
I couldn’t go on any trial because I had BC in my other side in 2018 and I was really disappointed but I think you should find out as much as you can about it and when you need to make a decision to go on it and make a decision then. I have a few friends on various trials and some find it comforting that they are still being seen by professionals a few years after their treatment (not trial) finished. But it is your body and your decision. 
Good luck for when your chemo starts, I hope it runs smoothly for you. Keep me updated on your progress xx

Steval
Member

Re: Triple negative diagnosis

By the way.....I know what you mean about taking part in trials. You just want a bit a ‘normal’ treatment to get the ball rolling don’t you?

Steval

 

Steval
Member

Re: Triple negative diagnosis

Hi there, Thank you for your quick reply. Sounds like we will be having chemo around the same time, so perhaps we could keep each going?! I know they have threads for each month of starting but now I know you’re out there and a kindred spirit!
Have made the decision not to look at Dr Google ever again. I’ve been in total panic mode and it only freaks me out but now I have an appointment with the onco ( she’s meant to be quite scary!), I feel once that treatment plan is sorted, I can just focus on what i need to do each day and let the rest of the specialists take over my life for a while.
I guess the only thing we can control is diet and exercise so I’m eating properly ( and losing weight sensibly - I’ve been trying to shift a stone for ages.....amazing what fear can do for you!!) and trying to get my 10, 000 steps in which definitely helps lower my sky high anxiety levels. I’m quite interested in diet, so if you know of any good tips during chemo.....I’ve read that green tea is a no no and some herbs......but that’s Dr Google again! 

Keep in touch

Steval

 

 

justine1970
Member

Re: Triple negative diagnosis

Hi Michelle

So I have my plan, the first week is Carbo/Pacli (not sure of the full names!) then 2 weeks of Pacli I think and then back to the beginning.  Is yours the same?

They have sent off my tissues and bloods to see if I can also take part in the trial but I am not sure if I am happy to do so as yet as it is extra on top of what already seems super hard!

I think I am also being genetically tested too, to be honest it is all so much I am losing track of what is going on!

How are you doing?  

x

justine1970
Member

Re: Triple negative diagnosis

Hi Steval

Welcome to the group even though it probably isnt your first choice of fun!

I saw my Oncologist last week and am starting my chemo on 17 August.  It is every week for 21 weeks, 1 bumper week followed by 2 single weeks and so on.  Seems like a hard regime but have no choice!

Let us know how you get on with your Oncologist and what the plan is for you, I think that everybody is different in what they have and when.  I have been asked if I would consider a trial which is 2 extra chemo tablets a day for a long time, still thinking about what to do!

Justine

Steval
Member

Re: Triple negative diagnosis

Hi there, I’ve just been reading through all your messages regarding TN. So nice to know there are others out there going through the same ghastly thing. You all seem a little bit ahead of me - oncologist next week then chemo.
Ive literally just joined the forum, so I hope I can join this conversation with you all.

Thank you, Steval

justine1970
Member

Re: Triple negative diagnosis

Hi Michelle 

Yes I am 51..I feel too young and too busy to have this in my life!

I am not sure of the plan yet, just know it’s for 5 months, my first oncologist appointment is on Friday so I assume I will find out more then. That’s really good to hear you are getting on along well, what a journey for you too!

I am going to have the genetics testing apparently to see if it’s positive.

That’s good to your walking, I live in the countryside so lots of nice places to walk which I would like to keep up as I need to stay active for mental health too.

This weekend I am enjoying my friends and the sunshine while I can and trying to process it too…as you will know it’s all very surreal when you don’t feel unwell.

Thank you for reassuring me. I know TNBC isn’t that usual!

x

 

Michelle21
Member

Re: Triple negative diagnosis

BC at 25 must have been very difficult. I’m assuming you have 1970 in your name as that is your age?  I’m also 1970 and I can’t imagine how I would have dealt with BC at 25. 

My chemo is for 21 weeks and I am 15 weeks through it. It seems like it’s been going on for ages but I’m fairing pretty well. Are you going to be having carboplatin?

Personally I don’t work but lots of people do seem to carry on working, mostly part time or just on the ‘good weeks’. I’m sure it will help you to have structure. 


Have you had any of the genetic tests? I was given them as last time was my right side and now it’s my left. They all came back negative. 


Re shielding I’m not going inside anywhere, having food delivered etc, but I’m walking outside with friends. I’ve told my team this and they think that is a good idea. I walk in the country not crowded places. Maybe worth checking what they mean by shielding. 

I was told I wouldn’t be able to drive myself back from chemo. 

There is a lot to take in and it’s like learning a whole new language! But it’s surprising how quickly you get to grips with it. I really recommend joining a Chemo thread for the month you start chemo. Some threads are more active than others so if you end up on one which isn’t that active try the one before or after. 

Hope you are able to enjoy the sunny weather we are having 

Michelle x

justine1970
Member

Re: Triple negative diagnosis

Hi Michelle 

Thank you for replying, it’s good to know you are half way through and still out walking…I am hoping to keep working from home but not sure if that’s being overly positive, I can do the hours I want to so can adapt but feel I need that in my life as I live on my own, I have a good support network but have been told we have to shield when on chemo.

It’s an awful lot to take in isn’t it.

I too have had bc before but I was 25 then and there wasn’t much information around then, this time I am having the chemo for 5 months then a mastectomy. Are yours for 5 months?

Are you able to drive to the chemo sessions?

x

Michelle21
Member

Re: Triple negative diagnosis

Hi @justine1970  I am also TN with lymph node involvement, I was diagnosed in March. I am over half way through my chemo which is my first treatment. Initially I had 3 FEC and now I am on weekly paclitaxel with carboplatin every 3 weeks. You have good and bad days but like @Debra61 I also walk everyday and really think it helps mentally and physically. If you have a friend to walk with even better. 
You were asking about cold capping which I am doing. Unfortunately this isn’t the first time I have had BC, I had HER2+ in my right breast 3 years ago and now have TN in my left. So I have cold capped twice. The first time my hair was in a short Bob but one time after washing it got tangled and a lot came out on my crown and parting area. I still contributed and just wore a cap or scarf which was ok. This time my hair is a short pixie cut and it has worked much better no scarf or cap needed. My hair is usually very thick and is a lot thinner but this only seems noticeable to me, there are no bald patches. 
After chemo I am having a double mastectomy because of my previous and then rads. 
I hope this helps it is so hard when you have just been diagnosed but once treatment starts you will feel better and slightly more in control. X

justine1970
Member

Re: Triple negative diagnosis

Thank you Debra. I have booked in for micro blading a week on Monday so that’s good! Bit worried about finding a nice wig that fits and doesn’t look like a wig but guess that’s the last of our worries! 

you sound very upbeat and positive.

x

Debra61
Member

Re: Triple negative diagnosis

Hi, it started coming out last Friday day of 2nd chemo 2 weeks after 1st one...Saturday more more came out when I brushed it by Sunday it was thin and i was moulting everywhere thought if I washed it, it would go anyway so Monday morning decided to shave it off  did no 3 with clippers, now have stubble but it's still coming out...still have my eyelashes at the moment and luckily I have my eye brows micro bladed...so glad about that.it is hard but if you find the right wig you will be fine and as people tell me it will grow back when treatment stops...looking forward to that time...take care lovely Debra61 xxxx

justine1970
Member

Re: Triple negative diagnosis

Thank you Debra! Reading this has given me hope…I love to walk and get fresh air so hope to do this although my nurse said I have to shield! If you don’t mind me asking how did your hair fall out? That’s the bit I am dreading the most, is it gradual? I am having a wig consultation next week. I don’t have a face for no hair and have extremely long thick hair!

so pleased all is going well for you, long may it continue!

x

Debra61
Member

Re: Triple negative diagnosis

Hi, being diagnosed is such a scary time,and the journey ahead can sound even more scary...I have started chemo and have done 2 cycles of ec 3rd one next Friday then docetaxel 4 shots, I have had minimal side effects at the moment which I am thinking I am lucky and hoping it will last although won't hold my breath...on the day of chemo I do try to drink lots and lots of water and continue to do so for the following few day's...I take all meds given to me and try to eat a very healthy diet(salmon, chicken, tuna lots of veg and fruit in three meals aday)...I walk or slow jog for 30mins daily on treadmill and walk the dog daily...I believe this is a great help for mind and body. everyone is different but I think if you take a bit from everyone's journey and listen to your body, you will do this, you can do this...my hair has fallen out, which I was dreading but have over come that... have got a wig which I wear when out, beanys at home....hope you find this of help to you...stay strong and positive, sending you lots of love and best wishes, keep posting on how you are doing.  Debra61 xxxx

justine1970
Member

Re: Triple negative diagnosis

Hi Ladies

Hope you don’t mind me jumping on your thread, I have been diagnosed today with triple negative stage 3 and start chemo in 2-3 weeks…very scared.

As you are ahead of me can you give me any tips please?

How is your treatment going? Did you go for the cold cap option?

x

Louise65
Member

Re: Triple negative diagnosis

Hi @Debra61 

I had 3 days of steroids and have to say although didn't want then any longer today I did an early walk no issues as I should be having 2nd knee replacement so did get a bonus lol.

I'm on EC 3 sessions over a 21 day period. Then I go on 3 cycles carboplatin/weekly pacclitaxel. This is 3 weeks on 1 week off so that 3 months I'm expecting be hard. Then 10 days of radiotherapy. 

I think some do chemo first to shrink the tumour size. 

Wishing you well.

Louise xx

Debra61
Member

Re: Triple negative diagnosis

Hi Louise, sorry for taken so long to reply, and sorry to hear about your mum...pleased also to hear that it hasn't spread, am I right in saying you have surgery then chemo? I'm seeing oncologist tomorrow to get treatment plan was told earlier that the test I have hadso far have come back clear but will have to have chemo then surgery, find the thought of chemo quite distressing...are you on steriods and do you have to take them all the time and how long is your chemo cycle? And yes you are right all this is a massive shock for  everyone who has to go through it, some days I can't get my head around all what's happened. I'm so pleased to hear you are doing OK and hope chemo will be kind to you. Thank you so much for replying to me...means a lot. Best wishes Debra61 xxx

Louise65
Member

Re: Triple negative diagnosis

Hi @Debra61 

I'm 56 next month and find myself with triple negative grade 3. It hasn't spread and surgery removed it all. It was a massive shock as had just lost my mum when I had recall on my screening not long after her funeral.

At first they thought I had hormone positive but after surgery etc this was confirmed.

I started chemo Friday and am doing OK and in someways feel better having to go down this route than having to take medication for 5 years if it had been the other as side effects are not good. 

Any questions just ask as happy to help out any way I can. 

Best wishes

Louise xx

HelenW_BCN
Community Manager

Re: Triple negative diagnosis

Hi Debra, 

I'm sorry to hear about your diagnosis. If we can support you in any way please do get in touch.

Our Helpline offers tailored support and specialist support, the telephone number is 0808 800 6000 and is open 9am-4pm Monday-Friday and 9am-1pm on a Saturday. We also offer online support services where you can email one of our nurses, or access our Someone Like Me service that Shi has mentioned in her reply also. You can see more information about all of our services here: https://breastcancernow.org/information-support/support-you

If there's anything at all that we can do, please do get in touch. 

Best wishes,

Helen - BCN

Shi
Community Champion
Community Champion

Re: Triple negative diagnosis

Not for everyone (not suburban) sorry text gremlins out and about 🙄💕💕Shi xx

Shi
Community Champion
Community Champion

Re: Triple negative diagnosis

❤️Debra, sorry you find yourself on here❤️ a good book that helped me is Surviving Triple Negative Breast Cancer by Patricia Prijatel. She is a 2 x tnbc survivor. It’s not for suburban it helped me. Do speak to your teams about any trials you might be eligible for, there are new trials for tnbc that you could be eligible for. Joan lunden and Robin Roberts in USA are TNBC survivors, please do use the someone like me option and do please use all that Breast Cancer Now can help with as much or as little as you need ❤️ others will be along to offer 👭👭❤️💕💕Shi xx

Debra61
Member

Triple negative diagnosis

Hello I'm Debra and have just been diagnosed with triple negative breast cancer, I'm 61 years old and extremely scared of the chemo and have a ct scan on Tuesday- not sure i can do this! I'm worried it has spread and there isn't much hope with treatment?! Already had the bone scan just waiting for results, anyone out there in my age group going through this?