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Triple negative and genetic testing

12 REPLIES 12
Guest user
Not applicable

Re: Triple negative and genetic testing

Nice to hear from you Jill.

Sorry i have not replied as I have been so busy getting everything ready for crimbo! I really dont know how I had time to work before this!!!

I have just had the third FEC. Yay! Halfway through now. I am pleased with how well I am doing! I feel nauseous for a few days but I dont vomit! I am weary but thats about it really. My hair is almost gone but I am getting used to it now!

I am pleased to hear that your tooth fell out unaided! And  I hope your boss has been behaving and has not passed anymore insensitive comments.

Soon you will be starting the next stage of your treatment.. rads. Please let us know how you get on.

I have an appointment with ONC in Jan so will ask re genetic testing but as Lulu34 said I dont hold out much hope.

Good luck Jill.

I will leave you with my motto

Stay positive and "keep smiling"

We can do this!

Smiley1Smiley Happy

 

Tolliebelle
Member

Re: Triple negative and genetic testing

Hi Smiley

Sorry haven't replied have had PC problems!! Hope you are doing ok with chemo? I have my last one next  Tuesday YAY!! Then have rads planning on 5th Dec. My tooth fell out by itself so no need for dentist!!!

Lulu

Thanks for info re reduction in dose it's good to know it wont make a difference. I hope you are getting on ok and not suffering with too many se's!!!

Am still signed off haven't had to deal with boss so all good there!!!

 

Jill xxx

Lulu34
Member

Re: Triple negative and genetic testing

Jill sorry to hear your boss is so unsupportive... its not like you asked to have cancer! hope he/she never has to deal with it! its not like your off with a cold.

i think your BC nurse is right... they dont usually recommend any dental work during chemo unless its an emergency which sounds like yours is and when they do they normally want good antibiotic cover especially something major like having a tooth out... i think smiley's idea of having it done at the dental hosp is prob a good idea.

i had a wisdom tooth out before i started my new treatment as it had been infected a few times and even though i didnt think there was an infection when i had it out there actually was.

also dont worry about your chemo reduction they give us the maximum they can even though its a bit more than we need so there is leeway for a dose reduction.

btw smiley i never said in my earlier post that i have a BRCA2 mutation and had bilateral BC 3 years a part... first was at 37 and had ER+ bc then 3 years later had TNBC and had a recurrence 2 years after that and again this year so im on a new trial drug which is hopefully its gonna be the TNBC equivalent of herceptin for Her2+... got my next CT scan in about 4 weeks... so hopefully its doing something... i didnt have FEC but hope your finding it not too bad.

Lulu xxx
Guest user
Not applicable

Re: Triple negative and genetic testing

Its bad enough having to live with BC and go through the treatments without your boss tutting at you! How very unsupportive! Try not to worry about work. Your GP was right to sign you off. A sicknote is a legal document and an employer cannot contest it. Toothache is awful. I hope you can get it sorted quickly. Perhaps if your dentist isnt happy to treat it he could refer you in to the local hospital dentist?

Your right too about having your chemo dose reduced. I would feel exactly the same. It is all we have....

Tolliebelle
Member

Re: Triple negative and genetic testing

Hi Smiley

 

Yes it does help when you can talk about experiences with others most definitely. I ended up in hospital for 4 days after number 3 with infection and soi they have reduced the dose for the next 2 at least which bothers me a bit as chemo is all we have so wanted to do the full dose really!! But they say it wont make a difference so have to take their word for it! I phoned work on Monday as didn't feel well and my boss tutted at me!! I was so upset it felt like she didn't believe me so went to GP and have been signed off. Hope you feel better now I have managed to get toothache it is wobbling and really painful but dentist wont do anything till he has spoken to my Onc (good luck to him with that he is a bit like he scarlett pimpernell!!) Have spoken to chemo nurse and she said can't have it out till next week as bloods low this week so popping pills like a good un!! Let me know how you get on

Jill xxxx

 

Guest user
Not applicable

Re: Triple negative and genetic testing

Thanks Tolliebelle.

I personally feel that sharing our experiences helps. I hope you did see the dr and got signed off work. And I hope you are feeling better now.

Let us know how you get on with the treatment and genetic testing wont you? It seems unfair that we have to wait until another family member gets breast or ovarian cancer or we get our 2nd lump before they will test doesnt it?

I have struggled after my first chemo as I picked up an infection and have never felt so ill! I wasnt neutropenic but am now on an antibiotic and today (5 days after the treatment) have managed to get out of bed! I hope I dont feel as ill next time!!

Best wishes to you all

Tolliebelle
Member

Re: Triple negative and genetic testing

Hi Smiley

 

I too am TN I founs first lump myself aged 47 had WLE Chemo and rads. Then found 2nd lump 3 months after clear mammo this year now halfway through 6 x Tax and having rads later had WLE in July. This was a new primary so I am to get tested for faulty gene as I have had bilateral BC. It wasn't mentioned first time around but was brought up this time by BS. Waiting till treatment has finished.
Good luck with your treatment hope you continue to feel well!!!

PS I have gone into work in between chemo's but due back in tomorrow and really strggling after this one may go to GP and get signed off!!

 

Best wishes

xxxxxxx

Guest user
Not applicable

Re: Triple negative and genetic testing

Thanks Fecinora,

Your right about my feelings towards other people who want to tell me about their own experiences. I just wanted to say that its completeley different but i didnt! I smile and nod politely and thank them for the information.

I will see how I feel about work but as I work in the hospital I feel the infection risk is just too great. But I will take each day as it comes.

I had my first session of FEC and apart from the nausea am not too bad really. But as you say this may get more difficult with each session.

Thankyou for your reply and encouragement. It helps alot.

Best wishes,

Smiley1Smiley Happy

fecinora
Member

Re: Triple negative and genetic testing

Hello Smiley,

I am tn and had FEC-T as well. I found the chemo side effects built up progressively. You really need to go with the flow and if you're not up to work you're not up to work!  The chemo can be rough for some, but you will get through it so take it one day at a time. 

A major side effect for me was getting very ratty with people telling me about other people's experiences and how to cope!  

Joining one of the monthly chemo threads really helped get me through the chemo.  My hospital are not forthcoming  with information,  so knowing what I was experiencing was normal was a great help.

Best wishes xx

Guest user
Not applicable

Re: Triple negative and genetic testing

Hi Lulu34,

Thanks for the links. Thats really helpful. I will let you know how I get on

Lulu34
Member

Re: Triple negative and genetic testing

Hi smiley1 (great name btw)

Triple neg bc is seen more often in brca1 carriers than the general population although tends to occur at a younger age and they should offer testing if you have TNBC under age 40 even with no family history.


There were a couple of research trials last year saying that the risk of BRCA1 is still a bit higher if you have TNBC up to age 50 and some units will test if you are in this group but that is not a national guideline.

It is however on the institute of cancer research guidelines so it maybe worthwhile arguing your case.

That said most TNBC is not genetic even if you are young so theres a much higher chance of not having a mutation.

In terms of risk one person affected by BC under age 50 isnt thought to increase your daughters or sisters risk significantly as early screening would be offered to close relatives if the affected persin was under 40 or if there were two relatives affected under age 60.

Genetic testing is available for women with TNBC under 40, women who have BC and ovarian cancer or for an individual with BC or OC who have 3 more affected family members with OC at any age or BC under age 60 in at least 3 generations.

This year the guidelines changed and some units are willing to test if there are 2 or 3 cases of early onset BC, but it is thought they wont pick up many more people with mutations just that more people are being offered testing.

Having said all that i think its still worthwhile getting a referral to genetics to discuss it all fully as your genetic department may be one of the units offering testing up to age 50 for women with TNBC.

These are the institute of cancer research guidelines on early screening and gene testing.
http://www.icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/18705.p...
http://www.icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/22778.p...

Good luck with your treatment and let us know how you get on with genetics.


Lulu xx


June_BCC
Member

Re: Triple negative and genetic testing

Hello Smiley1

 

Welcome to the forums, I’m so pleased that you are finding the forums helpful.

Whilst waiting for replies to your post maybe you would like to give our free helpline a call where the staff can offer practical information as well as emotional support.  The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

Guest user
Not applicable

Triple negative and genetic testing

Hello everyone,

I have been told that i have TNBC with a few +'ve ER receptors, PR negative, HER negative.

I found the lump myself (age 47) and had WLE and SLNB in July this year. In September I had to have further re excision of margins as the margins were not wide enough.  I am starting chemo this week (3 x FEC followed by 3 x Docetaxol).

I came on here to find out a little more about the chemo. People have been telling me how they know someone who did this and that during their chemo and I have been saying I dont know how I will be! I think I feel guilty for not going to work.

I have found reading the forums on here to be full of interesting and useful information. I am amazed at how resilient and strong you are and how much knowledge you all share.

I was frightened but after reading some of your posts I feel that I am not alone and even though I dont know you I already have many friends!!

As there is no history of BC in my family I worry for my daughter, sisters and nieces. I have read that genetic testing is only available for people who have 2 close family members with BC. Is this true?