Primary BC in both breasts

[marial]

Hi Sandie, glad to have found you again, I hope all calms down soon. I had stomach pain and upset stomach when I was first on taxere (or what ever it is called !) I was surprised how well pantozol (stuff to prevent stomac ulcers) sorted me out.
Lulu, nice to hear you are back at work, but look after yourself now.
Tommy tickemouse, Lulu can answer your questions better than I can , but as I understand it, if the cat scan shows anything they do an MRI on the lesion they can see, they don't need to operate to see what there is. They found something on my liver on the scan and did an MRI, but it turned out to be a benign cyst. I'm not sure why they did chest Xrays (boht sides), but I know secondaries in the lungs can appear after bc. In fact, that is what my Mum died of. Maybe I had a sort of bc that is prone to lung complications, but I felt they might see if anything was growing in the chest wall on my mastectomy side. Throw all the tests they can at me and i'll accept !! I used to have bone scans too before 2010, but not any more, my onc says it will only tell me that my arthritis is progressing (great I said, I'm too young for arthritis. No, he said, no one is too young for arthitis !)
My scan is on Thursday, so hopefully I'll soon be starting a new post!
Maria xx

[SandieE]

Hi Marial - sorry you lost me I also lost you! I am on here as Bizzielizzy & SandieE as I tried to continue as registered in 2003 & the site wouldn't let me so had to register as SandieE then I asked if the two could be amalgamated which they couldn't do then the site had technical problems & it all went haywire! So, I just gave up. It seems better now but not sure really who I am on as! LOL!!
Anyway, I am due my 3rd cycle tomorrow but have had an awful time as having most of the side effect plus an unusual one as it is attacking my stomach & bowels & the pain for 2-3 days or so is unbearable. I will have a talk to the oncologist tomorrow & really hope he has some wonder drug to ease the pain as not sure I can do this!
Be thinking of you having your CT scan in October & really hoping for your posting of 'Miles Stones' - good luck & hugs! x
Hi 1960girl - so sorry you are having to go through this again after all these years it really is so unfair as we do put it all behind us & feel we've been a success story then bingo!!! be thinking of you in 2 weeks & hope all goes well, and by having a double Mx you are making sure you are gettting well rid of this horrible disease. Big hugs x
Tommymicklemouse & Marial - I have been told I will now be having MRI scans as my mammograms have not shown any of my tumours but I did have to strongly say there was no way I was having another mammogram as a waste of time money etc., and insist I had something that would show a tumour up. However I am also aware MRI scans can show up areas that may be nothing & no one sure until they operate so this has its problem as well! I live in Hampshire by the way.
Sandie xx

[Lulu34]

TTM in the UK its very unlikely to have the same indepth follow maria has had overseas.

here you would normally have a mammo if you still have breast tissue, if no breast tissue then a clinical examination only, but no xrays, CT or MRI at most units unless you are able to find a research trial.

1960s girl sorry you are joining our special wee band.... Its a right old bummer to have to deal with this once, but twice is a bloody insult! Anyway i had hormone pos bc in 2006 and then TNBC in the other side in 2009 and A recurrence of it last year.... Third time was actually much easier than no 1 and 2 put together in terms of the psychological impact but the treatment was really heavy going this time.... Fingers crossed its the last time for all of us.

maria i always wonder how your getting on, so im glad you pop back every now and then to let us know how its going with you. Im recovered and back to work but still tired and slow... But getting there.

love and hugs ladies
Lxxxx

[tommyticklemou]

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

[marial]

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

[tommyticklemou]

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

[marial]

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

[1960girl]

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

[marial]

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

[SandieE]

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

[Lulu34]

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

[Guest user]

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.

[SandieE]

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

[Lulu34]

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

[Rattles]

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

[SandieE]

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

[Lulu34]

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

[SandieE]

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

[ChristineP]

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

[Lulu34]

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

[Sascha]

THank you and mine did not show on mammograms either, worrying isn´t it? Take care....xx

[Guest user]

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

[Sascha]

good luck bizzy Lizzy - sorry your c was not found this time - was it by any chance a lobular cancer?

[Guest user]

Have seen my oncologist today and having Hickman line put in possibly next week, (as had axillary clearance on both sides no arm left for canula) then chemo start on 16th August. I'm to have Taxotere 4-6 cycles & it frightens me to death all the effects he listed! I also have an infection on my breast & on strong ab's plus having to have fluid taken every other day so hope this clears up before the 16th.
Even though been through this before I feel absolutely terrified, just wish I could calm down & take it in my stride but I can't seem to at the moment. They say I will have MRI scans in future as this time round my cancer was so much worse & missed by all mammograms & checks.

[marial]

oops

[Rattles]

Hi Lizzy,
I just wanted to offer support as you deal with this new information. As you already know, I had the experience of scans not being as accurate as I had thought. I guess they need the actual tissue to really know what is going on at a cellular level. As disappointing as the news must be, thank goodness you noticed the lump and acted quickly.
My first tumour was 5cms at its widest. Like you I had lymph clearance both sides. Mine were triple negative and with the lymph involvement, the main treatment on offer has always been chemo. I really did not think I could cope again, and yes its been hard, but I have just had cycle 4.
It sounds like you are still taking in this new information and you might decide you want to go back/ring the Breast Care Nurses to talk this all through again and get it clear in your mind. I strongly believe that we need to go with our gut instincts but it takes time to work this out.
Take good care, Rattles x

[Guest user]

Had my post op check with consultant yesterday. The cancer is same as last time ER pos but stage 3 rather than 2. The tumour was 6cm this time, last time 2.5, with both I had lymph node involvement 2-3 so have had full clearance on both sides. My CT scan they say was clear but although had this before my op it didn't seem to give them the full scale of how vast the cancer was in my left breast. Also the mammogram I had 2 weeks previous, which was the new digital screening, only showed some cell changes again nothing like the scale of cancer I had. My consultant went through all my treatment & again mentioned regular mammograms after treatment & I said what is the point as no mammogram has ever detected my tumours? that was when I was shown the digital result which she said if had been routine I would have been recalled & probably referred, however the fact was that although I was being screened because I found a lump the radiologist reported no lump detected! I find this all confusing & also wonder if I should trust the CT scan???
My tumour evidently had originated in the lower fatty part of my breast & had grown upwards past the nipple that is why a lump was not detected until very recently & by then painful. They had to take numerous amounts to clear the margins & the consultant did note on his report a 'possible re surgery for full mastectomy' however, as final results proved the last margins as clear this was not recommended as necessary, I am still wondering if it would be best?
Think I am dealing with this in some ways better than 1st time round I am also wondering if the right decisions are being made, so all just as scary!

[Sascha]

Hi sharon, THe Anastrazol does not affect the bones that quickly but if they don´t know waht your bones are like now they won´t know waht effect it might be having.......it is all the tests that make this so stressful as you always trhink the worst .- I am waiting on full results from lung scan, bone scan and colonoscopy where they did a biopsy, but I don´t think and did not get the impressions there is anything untoward in any of the tests.......they will wait for you to be healed enough before starting rads as otherwise it can re-open the scar etc - we might be having rads at the same time as mine will start some time in August.......have the appt with consultant Rad person in first half of aug...
Its a horrid time, but we are still here and living life

[MINI_20]

HI HAVE NOT BEEN ON FOR A FEW WEEKS,I HAVE GOT MY HEAD ROUND THIS NOW AND KNOW I HAV E TO GET ON WITH IT ,HAD A FEW PROMBLES AFTER THE OP BUT THINGS SEEM TO BE GOING OK NOW,I HAVE STARTED ON ANASTROZOLA HOPE THE SIDE EFFECT WILL NOT BE AS BAD AS TAMOXFEN.I AM A BIT WORRID ABOUT THIS BONE SCANS WHICH I AM HAVEING ON TUESDAY THEY SAID I AM HAVEING IT BECAUSE OF THE ANASTROZOLA IT DOES SOMETHING TO THE BONE,IT JUST WORRYS ME ALL THE TIME ALL THESE TEST.I SEEM TO BE WAITING SO LONG TO HAVE THE RADS I JUST WANT TO GET THIS OVER AND TRY TO GET ON,I AM FINDING IT MUCH HARDER THIS TIME,TAKE CARE SHARON

[Guest user]

Dear Rattles,
So sorry for you to have to go through all this it isn't at all fair, particularly after having bilateral mastectomies & all those scans. Makes me wonder what is out there that we can be confidentl will detect tumours?
Good wishes & change of luck to you & all sufferers out there.
Sandie x

[Lulu34]

Dib unfortunately the scans are not to put our minds at rest but to detect cancer.... They tend not to scan just to make us feel better particularly where the risk is lower than that of the general population who only have mammos every 3 years.
However if you have concerns then they will normally check anything your worried about.... So get to know what your breasts feel like now so that if something new develops you will notice it 🙂

[dib]

thanx ladies for your replies,i would have thought a ct or mri scan yearly would be a better check,especially when you consider the prescence of brca 1 and/or 2.Im going to request scans anyway and see what they say,it would put your mind at rest much more than an examination.
Di.x

[Lulu34]

hi bizzylizzy

i also had two primaries.... i had a hormone pos grade 1 in the right in 2006 and then hormone neg grade 3 in 2009, then a recurrence of grade 3 in my interpectoral lymph nodes and chest muscle last year... found out i was a brca 2 carrier between no 2 and no 3 in jan 2010.

iv not had mastectomies but may do in the future... got my annual breast mri next month.

for those who had mastectomy the usual follow up is annual breast examination for 5 years

Lulu x

[yamslass]

Dib I had bilateral mastectomy because of different primaries in each breast only mine were discovered at the same time. I had lobular and ductal but no lymph node spread. My yearly check up in May was just a physical examination.

[dib]

Hi Rattles,i know there is still some risk of reccurrance but wondered how they keep a check on you after mx.I will ask when i go again on 18th,its such a roller coaster ride isnt it.Ive heard a few accounts now of scans not being all that reliable,or is it the people who have to decipher the results?Bizzylizzy good luck on wed,will be thinking of you,
Di.x

[Guest user]

Hi to you all!
I go in on Wednesday for a breast reduction & reconstruction of my own breast tissue to match my R breast, will have axillary clearance as they know it's in 2 nodes & are suspicious of the 3rd. So then chemo & RT. I was told today that the chemo would be different so as not to be a strain on my heart after last time.
I wish all you ladies well & will speak again after my op.
Sandie xxx

[Rattles]

Hi dib,
I assume after you have had the mastectomies there is minimal risk. What happened to me was that when the tissue of my (so called) good breast was biopsied, a 1.5 cm tumour was found- this was depsite two MRI scans, mammogram and 2 ultrasounds all in 6 months!!
Unfortuntately, I then had to have a complete mastectomy on what was the 'bad side' (hard to keep up?!!!) due to inflammation and swelling caused by radiotherapy when originally treated in 2009 - at that point I didnt know about my family history or brca1.
Hopefully, this will reassure you and anyone reading this that once you have had mastectomies, risk drops significantly and I did not get diagnosed following mastectomies- sorry for being unclear!
Rattles, xx

[dib]

Rattles,
i had double mast last august as i had brca 1 gene and sequence changes in brca2.How did they find youve got it again and what tests do you have when youve had mastectomies?Im so sorry youve been dianosed again,it must have come as a complete shock,im quite shocked just reading your post.Hope youre coping okay,best wishes to you,
Di.x

[Rattles]

Just sending you positive thoughts and support bizzy lizzy,
I was diagnosed with a 'new' breast cancer' this Feb (first diagnosis in 2009) after risk-reducing bilateral mastectomies which I decided to have following brca1 diagnosis (2011).
It was a bitter blow. Like you, cancer same features. Still quite hard to believe.
I have just had third chemo. Not yet clear whether I will have RT.
Rattles, x

[scottishlass]

Bizzy Lizzzy, I know of a younger lady on here who has had similar results to you. I wil point out this thread to her and hopefully she wil reply soon. I am sorry that you have had this to deal with. Not been there myself but I do have bone mets which were diagnosed 10 years after primary. A different Kettle of fish I know. But will go on to her page and let her know about your post. Val

[Lucy_BCC]

Hi Lizzy welcome to the BCC forums

I am sorry to read about your new diagnosis, in addition to the support here our helpliners are on hand weekdays 9-5 and Sat 10-2 on 0808 800 6000 to offer you further support and information.

BCC have published a factsheet about breast cancer in families which you may find useful so I have posted the link here:

http://www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32

Take care

Lucy

[ChristineP]

Hi lizzy, I am sorry to hear you are having to deal with a new primary, and having to go through it all again. I hope all goes well for you, and I am happy to hear your ct scan was clear everywhere else. You will find there are a number of other ladies here who have to deal with a second primary. I am one of them. I have recently had a second mastectomy and radiotherapy. I was spared chemo, as I have had that within the last 18 months for my first BC.
I too had my second breast reconstructed - at the same time as my mastectomy - and a good thing is that at least now they are much better matching 🙂 just trying to keep seeing the bright side here.
Wishing you the very best

[Guest user]

Hi,
I have just been diagnosed with a primary BC in my L breast which is 9 years after having a primary BC in my R breast.
In 2003 I had a partial mastectomy, axillary clearance with mini flap reconstruction, 7 months of chemo & 6 weeks of RT.
The new BC is the same size & type as before but as in a different area & because my L breast is larger than the R one they are going to do a wide local excision, with axillary clearance, & make it the same size as my R reconstructed breast. It appears I will also have to go through chemo & RT again!
Has anyone else gone through a similar process?
I am 68 years old & my mother died in 1982 after having BC in her L breast then BC in her R breast 7 years later, so it is possible I am carrying the BRCA gene & have been referred for testing.
I am thinking positively as had a CT scan to make sure nothing suspicious in other parts of my body & all was clear thank goodness.