That’s good news about your results Pam, I didn’t ask too much as it worrys me, he didn’t say anything too negative really but I am still obviously very worried about it. But he is right I have to try and move on with my life instead of thinking every ache and pain is it returning!! Where are the hositals u all go to girls, I went to nevill hall in Abergavenny xx
Hi I was too just diagnosed with triple negative in August. I am having a double mastectomy this Thursday then chemo for four months. I am new to this whole thing but from what I have read and heard if ur lymph nodes are negative then you have a better success rate for survival. Because we are triple negative studies show that we have a higher chance of recurrence. I too was driving my self crazy ready and learning about his monster but one doctor said …yes we can go over numbers and statistics 80/20 or 70/30 or even 1/100 but how would you know which number you are. You can be the 70% success or 30% fail there is no way of telling. So yes I do read but only so that I am more knowledgeable when speaking to the doctors about my condition but as far as statistics I don’t apply them to my life any more I fill my self with positive thoughts people and stay determined for my children who are 6 and 11.
That’s a very good way of looking at it, no one knows what’s ahead but god willing we will all be ok ladies xxxx
Hi everyone
The hospital I was treated at is university hospital Stoke on Trent. My tumour was very large also I had one node involved, a micromet. The surgeon said a very some amount was found in the node so he didn’t feel it necessary to do full node removal. I never look at statistics , I know of ladies who are fine that had lots of node involvement and others who had none and had reaccurances. I just try to keep busy everyday to occupy my mind. Xx
Hi Roseanne,
Good to hear from you. Yes, it is a bit of a double whammy having TNBC and then finding out about BRCA. Mine happened a bit differently to yours by the sound of it: when I was diagnosed over 13 years ago we had no family history of BC so my doctors assumed it was just bad luck. Then, years later, when I’d been told from my Drs that the risk of my original BC returning was almost negligible, a couple of my cousins got BC, and I eventually had my BRCA gene confirmed a year ago, 12 years post diagnosis. It was all pretty shocking/upsetting to begin with (not least cos I thought my BC journey was pretty much done with), but I’ve gradually come to terms with it, and while going for check-ups leaves me fairly terrified the rest of the time I am mostly ok. And it’s better - for all of us who have it - that it gets discovered, as then we have options. If I hadn’t found out I would have just kept on being screened at the normal level, but now I’ve added MRI & regular ovarian checks, until I have the ops, which I’m fairly certain I will at some point in the not too distant future, but just not quite ready yet for various reasons. Anyway, I hope all your treatment and ops go really well. And please remember (everyone) that you can survive TNBC. As I’ve said in earlier posts, I found it helpful to focus on the positive stories out there and not pay too much attention to the negative ones - or you can end up driving yourself crazy.
Best of luck,
Bel xx
Hi all hope u are all doing ok, I now have a covering of hair, very think but it’s hair and my eye brows are starting to come thro yay, my love to u all xxxx
Hi im Dawn and was diagnosed with tbc stage 3 with node involvment. Had masectomy then 6cycles of chemo and 15 sessions of radiotherapyy. I was advised to see genetic counsellor and found out i had brac1gene. I then had decisions to make and also having 2 daughters impacted on them too. I decided to have ovaries and fallopian tubes removed and would then have 2nd masectomy. However after op a tumour was found in left ovary . Stage 1 ovarian cancer therefore total hysterectomy followed and am now having six rounds of chemo! Fortunately with the carboplatin you dont loose your hair. I did the cold cap with the tbc chemo and combined with Lush “new shampoo bar” kept my hair! I am so glad i had genetic testing and opted to have profalatic surgery as was told the type of ovarian cancer i have would have spread before i had symptoms and we would be in a different situation now.next step finish chemo and then second masectomy planned for january then hopefully back to normality! I do get scared and worried about what the future holds but staying positive, having a fantastic husband (who i have falling in love with over again!) 2 lovely daughters and brilliant sister family and friends! Would love to hear from anyone out there who is in the same situation as myself as believe its not very common to have tbc and ovarian cancer within acyear of each other with the brac1gene thrown in for good measure! Dawn x
Pam, what a lovely and heart-lifting message you sent!
Love to you & everyone else.
Yes - I am sure there are plenty of us! I had breast cancer diagnosed in January 1996; it was a large tumour and plenty of nodule involvement under the arm (I think it was 26 out of 42 nodes were affected. I had a mass of treatment, starting with a mastectomy, followed by a lot of chemotherapy incuding some associated with a trial (the trial was later abandoned) and then radiotherapy. To my astonishment, and I rather suspect that of the medics involved, I have not had any recurrence. I was of course absolutely terrified, and I think the fear was the worst thing of all. What helped for me was an absolute determination to do all I could to survive; I had several children, down to aged 10, and so much to live for with a significant and very interesting career. So I focused on how to keep the fear at bay, and how to do what I thought would help - building in as much walking as possible, and eating healthily (though we did that anyway, and I did not do anything at all extreme but just made very sure I always ate a lot of vegetables and fruits of various colours), and above all kept my spirts up in the dark times of night by visualising being a miniature carpenter, hammer in hand, checking out all my cells and bashing any cancer cells up and down bones, liver and everwhere else. I am now a proud grandmother of numerous children, happily busy in retirement, and still thrilled to be alive and well, even when it is cold and raining. I decided to be sure to do all I could to enjoy, in whatever little way, whatever life I was able to live, and I still do. I wish the same for you and for all others who receive this alarming diagnosis.
Yep we need more encouraging stories.
wRote to MP re the drugs. Wing withdrawn and got a curt response. At least he know how I feel. I do hope everyone is sending objections to their MP and signing the petition. We are only strong as a group of we keep together on these issues and must remember those in the secondaries group.
Flu jab yesterday and heath check. I’m in all of the good ranges except slightly higher than the 25 BMI at 26 so must try to loose a little weight. Today have bad sore throat.
PLEASE DO SIGN THE PETITION. Link below.
Px
How disgusting they have told you it’s only newly diagnosed woman who won’t get the drugs! Absolutely criminal…I’m sure depriving anyone from life saving drugs would be deemed murder in a European court of appeal. I’m horrified to hear this…shame on them! I will share this petition for sure. 38degrees seem a good site for causes like this too. Hope you are all doing well. Sending love Lorna x
Yes, if any of us need these drugs we will be reduced I believe. Shocking hence need to push this into the open and get people to sign.Pam
Thank u for sharing Regina…ur words are so inspirational. Initially it was hard to look at my self without any breast which were removed 9/10/15. But then I said my breast dont make me who I am. I will begin Chemo this Friday and I will remember all u wrote and use it to build my strength. I will wear my scars as a true warrior.
Hi pam/ everyone
Hope you are all doing well. I finished treatment in May this year. I’ve had a few nice hols and am due to go back to work on Monday, ( hopefully) I’ve been in bed for five days with a bug typical isn’t it!
Pam I had really bad shoulder pain and had a bone scan in the end. It came back clear and the pain eventually went , I think it was due to the chemo. I am now having really bad pain in groin/ hip area when I mentioned it to onc last week on my 3 month check he has arranged for another scan. Hoping that will be clear. Have you had a scan at all ? I think the chemo really plays havoc with our joints.
How is your daughter doing Dee hope she has finished her treatment now.
Sending lots of love and hope everyone is doing great ?Xx
Hi all, I’m not too bad, have had pain in my bum cheek but it’s much better now, oncologist wasn’t concerned as was coming and going, probably sciatica, I’m hoping to go back to work soon, coming off the sick end of November then having 3 weeks annual leave then start back to work Christmas week on phased return, I can’t wait. I still worry so much especially about every ache and pain, suppose that’s natural. I hope your pain in your shoulder eases Pam and amanda hope your hip pain eases too, suppose we r going to have aches and pains, we just worry about them so much more now. Sending u all lots of love, sue xxxxx
Sorry Dee I meant to ask how your daughter is doing also xxx
HI Anne sorry you have had to join this site, I also have TNBC with 5 out of 13 nodes positive, I have lumpectomy then total node clearance 2 weeks later then started chemotherapy 4 weeks after that, i think all consultants do things differently and there’s no right or wrong way as long as it’s done. It’s very scary, I used the cold cap bit it didn’t work for me, but it did for my friend. They supply u with the cold cap at the chemotherapy session, sue xxx
Hi Ann sorry you have to join us x. it’s always a minefield when you first get diagnosed. I’m still not able to offer lots of support as early in "the journey " myself but what I have found is the support on this forum is invaluable. There is a chemotherapy monthly thread on going through treatments where Some November 2015 chemo starters have joined. You may find this useful as you will be having your chemo the same time as the others on that group.take care xxxxxx Lesley x
Hi ann
Sorry you have to join us here but you will get lots of support. Like Pam I had chemo, surgery and rads. My tumour was large but responded quite well to chemo. My hospital didn’t recommend cold cap but if you can ask for cold mitts for hands and feet . These help nail to stay put and will help prevent pins and needles in hands and feet. I also wore black nail varnish all through which helped. Also drink loads of water to flush it all through.
Amanda xxx
Hi amanda I was thinking of u earlier, was wondering how your hair is coming along and if u have started work yet xx