good luck bizzy Lizzy - sorry your c was not found this time - was it by any chance a lobular cancer?
Hi Sascha,
Mine is Grade 3 Ductal ER/PR pos with 3 pos nodes so full clearance. Neither of my 2 tumours showed on mammograms & now they say I’m to have MRI as screening in the future. Also referred for genetic testing.
Just read you profile, you are very brave, good luck with your treatment.
x
THank you and mine did not show on mammograms either, worrying isn´t it? Take care…xx
bizzy lizzy its possible you have dense breasts and cancers are harder to pick up… younger women tend to have denser breasts and that is why they arent routinely given mammograms so its possible you have youthful breasts! good luck with your treatment.
i had a hickman line put in but only after id hadthe first two through peripheral cannulas… i also thought after i got the second primary they wopuld give me a line as shouldnt be using either arm but they still do at my hosp until your last veins dies!
glad you have been referred to genetics… i was going to suggest this as you have had bilateral cancer and its not very common in the general BC population and more likely if you carry a gene mutation… some healthboards still wont test you based on this but you can ask to be tested through the genetics of familial breast cancer study where they test to see if you have either of the known genes and if you dont they then use your dna to try and identify new genes that may cause BC and the trial is sometimes called BRCA 3 trial because its trying to find a third gene.
the tax isnt nice but i have friends who sailed through it and never felt up nor down during treatment, but some do have an awful time but you will get through it.
take care
lulu xxx
hi bizzy lizzy
Wishing you well today being the start of your chemo. I hope the side effects will be mild for you. Remember there are lots of lovely ladies here to support you. Warmest wishes
Christine
Hello again ladies,
I haven’t been on here much as with all the website technical difficulties not many are posting and they have me on here as Bizzylizzy & SandieE so becomes very confusing! I do get copies of postings to my old & some to my current email, again very confusing!, so replying via one of these!!!
I had my Hickman line put in yesterday, quite a nerve wracking experience on it’s own as the consultant didn’t seem to know a thing about me, why do they not read notes? He insisted I should have a canula put in one of my hands but I said a strong NO Way! I said I’d had lymphodema once & did not want it again as I know people who have & are suffering badly with this due to having BP & needles on the lymph node cleared arm & as I had both cleared made me more at risk. I said use my foot. It ended up with him making me sign the consent with the added note, by him, that I was refusing emergency treatment, which, as I pointed out I wasn’t I was only insisting the canula be put in one of my feet, his reply was that if he couldn’t do this it was the same as me refusing!!! Of course he couldn’t do it, (which was what it was all about) Then during the procedure he had great difficulty in getting the line into my vein but was half way through by now & banging & thumping my chest & asks me if I’d had radiotherapy, Umm YES did you not read my notes?!!! Because of this it caused great difficulty but luckily for me he succeeded otherwise I may have had to go through it all again on the otherside!!!
My chemo is now to start on Monday - not looking forward to it at all so fingers crossed my reactions to it aren’t too bad & I can cope with the 6 cycles but my oncologist feels my body may only cope with 4 but he’d like it to be 6, we will see.
I have the Genetic Services form to complete but waiting for some family information before sending off.
Thank you all for your messages & I do hope you are all coping with whatever you are going through, lots of love & hugs.
Sandie xxxxxx
that sounds like a right ordeal Sandie… hope the chemo isnt too harsh on you… i had an alergic reaction immediately after the infusion started and went red and was hallucinating glitter was coming down the wall but its was stopped for a wee while and was given antihistamine and corticosteroid infusions and was fine after that… i managed all 6 cycles and had neulasta jags the day after chemo to help raise my bloods back up… it was harder going than the e-CMF i had last time around, but i didnt get sick just felt extremely fatigued and still do tbh.
good luck for monday xxx
Hi, if anyone still posting! Thought I’d see what was happening on this site but seems there are still problems!?
Having my 2nd Tax on Monday, got through the 1st although had a very bad first night with diarrohea then an awful weekend with same with extreme stomach pains, ulcers, flushes, nausea, nerve pains but by the Monday felt OK apart from very weak. Also had a line infection so IV abs for 3 days then a weeks supply, this last week has been fine so hoping I cope better next week. Hair falling out which depresses me to extreme!
Hope everyone coping xxxx
Hi Sandi,
Just wanted to wish you luck for Monday.
I had 5 cycles of carb/tax in the end stopped at 5. Your SE’s sound very familiar.
Hope you can get your meds sorted better this time- the stomach problems can be eased. I remember my hair falling out. So much worse second time. You grieve for it and then you do move on.
take care, Rattles xx
Hi Sandi and Rattles
i also had similar symptoms on carbo/tax… very weak and faint and short of breath, very sore swollen mouth and pains which i still get now even though its 6 months since last chemo… sandi i varied between the runs and being completely bunged up for over a week each cycle… so sorry you also got an infection… but hope the ABs are helping and that tax no 2 is a bit easier… i found the first one worst as didnt know what to expect and although it was hard going all the way through i knew when to expect sore mouth, feeling faint, pains etc
sorry you are feeling sad about losing your hair, i think most people do find it a bit depressing but for me i never bothered too much about it. when my hair fell out for the second time i didnt shave just left it to fall out instead, but wasnt too traumatised either time but will be very glad to have my long locks back in the next year or so.
love and hugs ladies
Hi Lulu & Rattles,
Feeling really rubbish actually on this 2nd cycle. They put me on Ondansetron for a/sickness as this can constipate so thought that would stop diarrohea which did really as I only had a short bout of it but also had terrible heart burn so gave me Lansoprazole & Senna as an incase for the constipation. Well apart from the awful mixed up heady headache, stomach cramps, ulcers etc., I’ve also not been sleeping as have had awful palpitations. I rang oncology today to ask if it could be the Ondansetron but they made me go to A&E for an ecg etc., was there for about 4 hours. Conclusion was yes, stop taking Ondansetron as all tests normal! I suppose mustn’t grumble as they were so nice & only being cautious but didn’t really need this today. Hopefully feel a bit better in a few days, we all know the 1st week is the worse don’t we? Re hair Lulu I haven’t shaved mine off but can’t go around as I am so wearing a wig. Hope you get your long locks back very soon. Thank you both for your good wishes. Hugs xx
Hi Bizzylizzie, I am the same as you i had BC in my right breast, followed by a masectomy in 2003, i have now got a primary BC in my left breast, am about to start 4 weeks of RT. lucky for me no chemo. I also wonder if i have a gene. I did ask for another masectomy but was told that was not neccessary, i will now live in fear of it coming back in my left breast, also i fear for my grandaughter, i am froghtened that noone will take me seriously if i ask about the gene.
Good luck with your second journey.
splodge you can ask if you can enter the study called the genetics of familial breast cancer study… the entry criteria is 3 BCs or an individula with bilateral bc… i had a right bc in 2006 at age 37 and left side primary in 2009 at 40 and later found out i carry a brca2 mutation.
if you were over 45 at the first cancer makes it less likely to be genetic but if your family dont fit the criteria for testing the research is a good option.
Lx
Hi Splodge,
Sorry not answered you sooner but have had a rotten time with chemo & infections, still on a/b’s so having tummy probs but they finish Sunday so hoping for a good week! Pleased for you you don’t have to have chemo, mine was diagnosed too late so was a large tumour in in 3 lymph nodes.
I was referred to the Genetic Services in my area as my mother had same as me primary in both breast & died in 1982. I also had a great aunt who had bilaterial mastectomies in the 50’s but don’t know why, they didn’t talk about things in those day. Also my youngest son had testicular cancer 10 years ago although they thought this was due to an undescended testes at birth. I have an app now with them next month & they also want to have access to my sons medical records.
Ask your breast surgeon consultant about referral or the breast care nurse if your not due to see anyone soon. They say it’s not necessary to have full mastectomy if your margins are well clear during lumpectomy or in my case mammoplasty, maybe I’m wrong but I do leave my trust in them.
Good luck.
Sandie x
Hi Everyone,
Sandie, I replied to your message that you sent me in July, but it got lost, and I sent you a few more (to BizzyLizzy) and at last I have found you again, I thought you had given up on the forums. I pop in from time to time, but don’t like to post as I never know if they will go through. I do hope you are coping with your chemo.
I had a pac (port a cath) put in for my chemo in 2010 as my veins never recovered from my chemo in 2003. The actual procedure was hell, but once it was in, it was great for the chemo and for blood tests and I still have it, so it is used for my 3 monthly blood test and when they do scans. I will be having my cat scan in October (as I have no boobs for mamograms), and hope to post on “miles stones” soon for my 9 years on and NED (with a horrid blip in 2010)
Lulu, I hope you are doing well, I read your posts when ever I come on to the forums
Slodge and Rattles, I hope you are both OK too.
Hugs Maria
Hello Just been diagnosed with BC in right breast where i had BC 10 years ago but in different place, thought it was all over and I was a sucess story.
Having double Masectomy in two weeks, no RT as had it before and will have to wait to hear about chemo as had that before.
Sending you all best wishes for treatment and so glad to find this forum as can now exchange notes and thoughts with you all.
Many Thanks
xxx
Hi 1960 girl,
It’s so unfair to get it again after such a long time, but if you’ve done it once you can do it again. It was an utter shock for me in 2010 and a very different experience. hang on in there.
Love Maria
hi marial,
was reading this thread, i read about you having a ct scan instead of mammo cos you have had double mx. can i ask have you always had ct scans instead of mammos from your first dx 9 years ago. wondering if thats normal at every hospital. i have had mx end of feb this year and wondering what tests/scans i will have.
many thanks
Hi Tommyticklemouse, I had yearly mamograms for 10 years before they found my first cancer in 2003, because my sister and my mother had had bc. After my first mastecomy i continued to have a mammogram on my remaining breast and a chest Xray until they discovered my 2nd bc in 2010. Now i have cat scans. My 2nd bc was triple negative, but my first one was hormone positive.
Goodness this all sounds so cold and un-emotional.You can imagine that my story is not quite so staight forward!
All the best to everyone
Maria xx
maria - thanks for that info. sorry to ask questions but the scans seem to vary from hospital to hospital. so was chest xray you used to have on your remaining breast on your mx side (sorry if that sounds like a dumb question). so now you have cat scans is that normal then for people who have had mx. i thought that people who have had mx didnt have any scan on that side.
thanks again x