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help!

63 REPLIES 63
Tolliebelle
Member

Re: help!

Thanks Lulu

Waiting again is the pits but I am not too worried after what surgeon said!

Will let you know the results when I get them

Thanks again

Jill x x

Lulu34
Member

Re: help!

Jill when I had my first TNBC in 2009 I developed a new lump just beside where the tumour had been removed just after I finished chemo so had to have a biopsy... Was told to prepare for the worst as they thought it highly likely to be cancer but it wasn't.... It was fat necrosis!

Ended up getting a recurrence 18 months later but had surgery and just finished chemo for that and now having rads to blast the wee blighter to kingdom come!

Good luck and fingers crossed for good news

Lulu x

21210
Member

Re: help!

Hi,

Just popping in to say what lovely reassuring people you all are, even when going through tough times yourselves you still make & take time to post & reassure for others.

Much Love

Sarah.xxx

Tolliebelle
Member

Re: help!

Thanks Jo

I was not too worried after what she said but then read about you!!! I am really sorry you are going through this again. Hope you dont suffer too much with the Tax I know it can be hard for some! I will calmly await my results ( she says bravely!)
Fat Necrosis yuk sounds revolting could of had a better name! LOL

Good Luck for Monday may your se's be minimal

Jill x

darlojo
Member

Re: help!

Hi Jill,

I too finished treatment in Sept 2011 for TNBC and then found another lump in "poorly" breast about an inch along from my original lump, now had total mx but thank god all 12 nodes taken were clear as were CT and bone scans. My hospital said I was the quickest recurrence they have ever come across (had to be famous for something!) BUT what has happened to me is very very uncommon and if they have said fat necrosis they wouldnt say that to you if they thought it was something else, please try not to worry too much, I know its very difficult not to but in my case we (my husband and I and my oncologist) think that a bit was left in and that's why I recurred so quickly. I'm starting a course of 4 tax on monday just to be safe but keeping my fingers and toes crossed that you are OK, (a friend of mine recently went through exactly what you are talking about and her's was a fat necrosis) I believe they are very common in women who have had just the lump taken away. Jo x

Tolliebelle
Member

Re: help!

Hi

Hope you dont mind me butting in but just I have just been to clinic today and had to have 3 biopsies on new lump just below scar from WLE. I started chemo a year ago tomorrow finished in Sept for TN grade 3 but only little lump and no nodes. I get results next week cant believ it could be back so quickly although surgeon said could be fat necrosis? Anyone with anything similar????

Jill x

Lulu34
Member

Re: help!

Ondansetron tends to cause constipation, so does pain killers and even some chemo itself causes constipation, but taxotere tends to cause diarrhoea but this usually kicks in after the constipation wears off.....

Basically the day before chemo couldn't sleep because of the steroids, on chemo day I felt fine and did usually sleep pretty well, the next day had to give myself the neulasta jag but feeling ok, next day feeling ok till evening when my mouth started to get a bit funny..... Then had a very sore mouth for about 5-10 days, felt very weak and shaky on my feet also a bit breathless and tended to get constipated. Then started to feel a bit better but still weak but got diarrhoea usually just for one day and then felt better for the rest of the cycle.

The effect was cumulative so the feeling well time got shorter each cycle as I got very tired and still am, even though almost 5 weeks since last chemo.

I did also have carboplatin along with the tax so that may have accounted for some of the SEs.

Btw. Not everybody gets the neulasta jag but it does seem to be more common for people on Tax, some people get a similar thing but it's daily injections rather than a one off one so it can be for around 7 days... You don't have to do it yourself either it can be done by the nurse at your surgery.

Lulu xxx

darlojo
Member

Re: help!

Hi lulu,

thanks for that, I was getting myself all confused about them (doesn't take much!) as I'm sure the first time I didnt take as many. I have to start them the day b4 like you say and take 4 in the morning and 4 later in the day for 3 days in total. They also gave me Metoclopramide and Ondanestron for anti sickness, but I'm sure she said take the "M" ones first and if they dont work take the "O", should I take the "M" tablets regardless of whether I feel sick or only if I feel sick? Is the Ondanestron that causes the constipation? Jo x

Lulu34
Member

Re: help!

Jo
tax is more likely to cause a reaction so you are probably on about double the amount of steroids and usually start them the day before chemo and not just on chemo day.

Lxxx

darlojo
Member

Re: help!

Hi Christine,

the weather has been gorgeous all day here too, we sat outside for a couple of hours this afternoon and I've just been out now for a 2.5 mile walk as I'm trying to keep the weight off (before I even start the dreaded tablets next sunday - steroids, I seem to be taking loads more this year than I did when I had chemo last time!)

Jo x

ChristineP
Member

Re: help!

Hi jo
Wishing you the very best with your chemo. I hope you found the taxatere thread, remember that everybody reacts differently so you may not have all the side effects :-). Good to hear your lymph nodes were clear. I hope you recover soon. Make sure you do your exercises for your arm 🙂
I have finished my radiotherapy, and looks like I won't be having any chemo this time. Now waiting for my ct scan.
Warmest wishes
Christine
Ps glorious weather today - it really helps to lift my mood. Hope spring has arrived where you are too.

Sam_BCC
Member

Re: help!

Hi darlojo

To find the thread Lulu is referring to just use the link below:-

http://share.breastcancercare.org.uk/forum/need-positive-posts-about-tax-t33626s660.html

Hope this helps.

Best wishes Sam, BCC Facilitator

darlojo
Member

Re: help!

Hi Lulu,

I'm useless with technology, where do I find this thread? thanx

Lulu34
Member

Re: help!

Jojo I'm here if you need to chat.... I actually like my wig I got this time much better than my last one....

Check out the positive experiences about tax thread..... Mostly isn't positive experiences butit Ives you an idea of what the worst case scenario would be.

Take care xxxx

darlojo
Member

Re: help!

Hi,

Been to see my onc today and she wants me to have 4 further chemos as a back-up as they don't know why my TNBC came back so quickly, 12 nodes all clear so this is just an "insurance". Going to have 4 x TAX starting mon 19th march - anybody who has had tax got any advice it would be most welcome, going to choose another wig next week! I'll have a bleeding collection soon! Jo x

darlojo
Member

Re: help!

Hi girls, all done now and "boobless". Dont feel as bad as I expected to be honest, feel better this time than I did after having the lumpectomy last year. Its just that waiting for results now that is doing my head in, its the hardest part I find. I have an appointment on wed at 3pm to see if I need chemo or not but now I keep wondering if I should have it anyway to make sure it doesnt come back but I suppose I'll have to do as I'm told and be guided by the experts! Jo x

Guest user
Not applicable

Re: help!

Good luck for tomorrow jo, hope it all goes well xx

Lulu34
Member

Re: help!

Good luck Jo hope it goes well.
Lulu x

Angelfalls
Member

Re: help!

Good luck with your op, Jo. I hope your meeting with your surgeon's previous patient gave you confidence and answers to the questions you had. Thinking of you and wishing you a speedy recovery and excellent outcome. All the very best, Angelfalls xx

Caramac
Member

Re: help!

Just wanted to say good luck Jo, we seem to have been diagnosed around the same time, so it must be such a shock to you. I am going to see the onco on 22nd as i have an itchy boob, but mammo was clear so not sure what to expect now.

I hope it all goes really well, and just wanted to show my support for you xx

darlojo
Member

Re: help!

Hi everyone,

thanks for the messages. I'm hopefully meeting up with a lady tomorrow who had double mx and tummy recon altogether with the same surgeon as me so I'll see what her tummy & boobs look like. My op has been brought forward by one week now so less time to think about it - now the 22nd instead of the 29th Feb - really starting to panic now!

DJ007
Member

Re: help!

Hi Darlojo

I had an mx and immediate LD flap recon a year ago. My back scar is about 10cm long, slightly angled and (mainly) where my bra strap goes.

If you have a delayed recon your scar will probably be bigger because they'll need to take more skin.

I had the immediate recon despite the possibility of needing to have rads. My PS (and the 'breast disease' consultant) was of the opinion that the end cosmetic result is better with immediate recon, only one major op, etc. They worked as a double act - the breast surgeon did the mx and node clearance, then the PS took over to do the recon.

I did end up having rads and so there is risk that I will get capsular contraction, but apparently that can be sorted with another, reasonably small, op.

Five months after rads and so far, so good.

HTH - feel free to ask any questions.

Dx

Lucy_BCC
Member

Re: help!

Hi Angelfalls

I have deleted it for you

Take care
Lucy

Angelfalls
Member

Re: help!

Don't know why this is a double post... Can't delete the second one. Sorry!

Angelfalls
Member

Re: help!

Hello again, Jo.
My LD scar is about 6 or 7" long and is more or less vertical, sort of at the edge of my back where the armpit starts, if that makes sense. Very different to Revcat's scar, by the sounds of it. I suppose it depends on your surgeon. The scar is still quite sensitive nearly 9 years on, but is more or less skin coloured now, not so pink. I did manage to burst part of my stitches, though, so it's not quite as neat as it should have been!!! And I'm sure that's contributed to the sensitivity.
Have you asked your BC nurse if there are any photos of your surgeon's work that you could see? Or if any patients who've had the op with your surgeon would be willing to talk to you about it? That's what I did before my op and I found it really helpful.
I hope that helps a bit but, as you say, I'm sure your surgeon will talk you through the best options for you. Take care, Angelfalls xx

darlojo
Member

Re: help!

Hi,

thanks for the info revcat - there is just so much to take in and so much choice when it comes to reconstruction! No doubt my plastic surgeon may rule out some ideas for me if I'm unable to have a certain type but I'll have to wait until then - thanks again ladies for the help. Jo x

RevCat
Member

Re: help!

Hi there,
I haven't commented on your thread before but as I had an LD recon can comment here... I have an 8 inch (20cm) scar that runs across my back roughly from spine to side. Theoretically it is covered by the bra strap but only if it's exactly the right bra! Mostly it isn't. The scar is a neat straight line that, runs at about 20-30 degrees from horizontal, and, a year on, is fading nicely. Sometimes a little bit tight when I stretch (though that may be internal scars perhaps). I would not choose to wear a backless/low back dress and my scar is very visible in a one piece swim suit but otherwsie no bother.

Hope you find all the info you need to help inform your choices.

darlojo
Member

Re: help!

Hi Angelfalls, can you (or anyone whose had an LD flap recon) explain to me what the scar on your back looks like when it is healed and settled down - I've seen ladies with the tummy flap scars but not from the back. Any advice would be appreciated. Does anyone known anyone who has just had implants put in? thanks girls for the help and advice as usual. Jo x

darlojo
Member

Re: help!

HI,

Katie,re the genetic testing, I didnt have anyone in the family apart from paternal grandmother who had bc in her 70's but because there was a lack of woman in my family to say if they would have had bc they said I was borderline whether I would be tested or not but the lady who saw me was great and put my case forward and said it went to panel of 3 people to decide and she would support me - so I got tested. My mum died of cancer at 43 of Hodgkins Lymphoma but they dont THINK it is linked to bc - I suppose no-one knows everything about cancer and they never will! Jo x

Lulu34
Member

Re: help!

Christine that is the pits..... I thought I was bad with 3 years between BC no1 and no2 and 2 years between BC no 2 and no 3..... You just feel like our getting over treatment when you end up back on the treadmill again.... I'm hoping for third time lucky for me..... Christine have you had genetic testing? There is a research trial called genetics of familial breast cancer study (it gets called brca 3 as its trying to identify new genes) and they will test you for the gene mutations if you have bilateral breast cancer as its uncommon to have both breasts affected.

Katie one of the criteria for testing is having triple neg BC under age 40... But there is a point system they use for working out the criteria too.... So mum getting BC in her 50s gets 4 points and then another 4 for being hormone neg, you would get 6 points for having BC in your 40 plus another 4 points for being triple neg... This would give 18 points but usually you need to have 20 to get tested... But I think with the history of both you and mum having TNBC would prob be enought to make ou high risk.... Good luck with your genetic testing.

Jojo hope you are hanging in there.

Iv finished this round of chemo now and waiting to find out if I will need more rads or not.

Lulu x

darlojo
Member

Re: help!

Hi Christine,

so sorry you've got this blasted thing twice too! there's no rhyme or reason why some of us get it at all never mind again. I had just been back to work 3 weeks and have gone on the sick again. Can I ask what kind of recon you had? if you can give me any tips on the mx then go ahead, my main concern is having a baby but fortunately my husband lost his job in November so he's around at the mo. How long did it take to get over the mx? Jo x

ChristineP
Member

Re: help!

Hi darlojo,
I am so sorry to hear you've got to go through more treatment. I hope all goes well for you on the 29th.
I finished my first treatment in June last year. Then in November I got a new dx for the other boob for more breast cancer, and had a second mastectomy with recon, now going through radiotherapy. Not sure yet what other treatment I will be needing. It's just not fair isn't it to get it twice, and so quickly one after the other. And there is no one in my family with any BC. So I did not expect this at all.
Wishing you the very best!
Christine

darlojo
Member

Re: help!

Hi,

had my chat at the hospital yesterday - phew! My breast surgeon says I defo have to have the "bad" boob off but is more of less saying I should have both off. I dont have BRCA1 or 2 but seeing as though my cancer recurred 10 months after my lumpectomy (spelling may be wrong!) he thinks I may have a susceptability to breast cancer - he did say BRCA1 & 2 are the only 2 genes known about at present and there may be others. He told me that I'm his quickest recurring patient ever! but I keep wondering if they left a bit in when they did the lump removal and that's why its growth back so quickly. They havent ruled out chemo for defo until they take the boob off and test more lymph nodes, if they are totally clear (which they seem to think they are) there'll be no chemo, but as you say Katie I'm thinking maybe another dose of chemo will keep me a better chance of it not coming back to anywhere else in the body if I do have a susceptability - I dont know, so much to take in. Op on the 29th Feb for 1 off, and then at the moment I'm thinking 2nd one off later in the year after our holiday with a double recon at that point. Its like its happening to someone else to be honest so pleased I have baby Thomas to take my mind off it sometimes JO x

Katie61
Member

Re: help!

Hi Girls,

Just coming back to you about having CMF for a recurrence...

My onc initially said that I probably wouldn't have chemo, but when we had the consultation after my MX & Recon he said it was 50:50 whether I shoudl have some chemo but on balance he recommended a course of CMF. I guess I could have said "no thanks" but I couldnt live with that. I think he was also influenced by the fact that it could be genetic and therefore more likely to return. I had asked for genetic testing when I was diagnosed in 2007 but at that time was deemed to be medium risk and they only test if you are high risk. One of the criteria is how many people in your family have had breast/ovarian cancer.

In my case both my Mum and I have had hormone negative BC. My Mum had it at 54 and is now nearly 79 without recurrence I'm glad to report! As Mum is an only child and I am an only girl, we have had a 100% hit rate, but that doesnt count!

Anyway my onc wrote to the genetics people again when I had my recurrence last summer and they have now deemed me to by High Risk (of the gene) and they are going to test me soon.

Finally, in recommending CMF my onc mentioned that recent studies have shown benefits of CMF in treating Triple Negative and if you Google 'Triple Negative and CMF' you will see these studies.

I hope all that explains why I am getting CMF (nearly finished now).

I am also interetsted to hear what your Oncs say about it!

Best wishes
Katie

Angelfalls
Member

Re: help!

Me again! Just to say that I had rads after my recon, so that's not a hard and fast rule either... your team will go through all the options with you, I'm sure, and will be able to tell you the pros and cons for your individual case. Good luck! xx

Lulu34
Member

Re: help!

Hi Jo
brca1 and 2 are genetic mutations (your not stupid at all. Usually explain myself better sorry).... So this is good news as it means the likelihood of a cancer in the other breast is much lower.... Out obviously doesnt rule out the the chance completely but it's over 10 times less common in people with brca1 or 2.

Therefore having a mastectomy to an otherwise healthy breast at is unlikely to get cance may be seen by some as a bit extreme but on the other hand it would maybe give you piece of mind and a matching pair if your surgeon was happy to still go ahead with this.

Fingers crossed for your bone scan too.

As for a decision about the type of surgery if you don't need to have radiotherapy you should be able to have immediate recon if that's what you want..... Radiotherapy is the main reason for a delayed recon.... Deciding what kind of recon depends on your personal history.... If you have diabetes, other serious medical conditions, previous abdominal surgery or are a smoker then often the tummy flap surgery isn't suitable also if you are slim there may not be enough tummy to use.... Likewise if you use your back a lot eg if you are swimmer or climber and use your upper body a lot the back flap may not be your best option but your surgeon should be able to advise oh about. All this.

Take care

Lulu xxx

darlojo
Member

Re: help!

Hi everyone,

lulu not sure what genetic mutation means (I'm stupid!) but I know I dont have the BRCA1 or BRCA2 genes as I got that result last week - does this clear anything up for you? thanks Jo x

Angelfalls
Member

Re: help!

Jo,
Great news about the clear CT scan! I'm so pleased for you and hope that you'll soon be posting about a clear bone scan, too. I had a mx with immediate LD recon when I was first diagnosed in 2003. If I can help with any info, just ask. Good luck for Monday, Angelfalls xx

Lulu34
Member

Re: help!

Jo without any genetic mutation the risk of getting a new cancer in the other breast is pretty low around 5% if you have a genetic mutation it's over 50%.

If your original BC was TNBC and diagnosed under age 40 then you can ask for gene testing if this hasn't been done already.

Katie I'm also quite surprised you had chemo for a tumour under 1cm without spread to nodes or beyond.

Lulu xxx

darlojo
Member

Re: help!

Catherine, I've just read your post, sorry I posted before I read it. Can I ask (if you dont mind) why you needed more chemo is your recurrence was only local and quite small? At my hospital they've only told me I would need more chemo if its spread anywhere and mx only if its just in the boob, I'm more confused than ever now ! Jo x

darlojo
Member

Re: help!

Hi lulu,

CT scan clear, yippee! having nuclear bone scan tomorrow and they will call on Monday with results. Up til now they have said if local recurrence only then its mx only, if spread to any bone or anywhere else then mx and chemo. Keeping my fingers crossed and toes and praying like mad that its not in bones and only need mx. They have said from the biopsies that its the same grade and type as my first cancer. Now its just do I have mx and immediate recon, 1 mx and recon later, 2 mx's and recons later and from where tummy or back, the more I look into it the more there is to consider. I also want to ask them what the % chances of coming back in my "good" boob are if I decide to keep that one, I've asked and they dont offer any more checks than normal just an annual mammo in the good boob. My brain is working overtime with all the thinking Jo x

Katie61
Member

Re: help!

Hi Gingerbud
I had already has Taxotere and Cyclophosphamide in 2008. When my onc recommended CMF for my recurrence, he referred to recent studies relating to triple negative - here's one I found which did really reassure me as initially I thought "a strong chemo (TC) didnt work so why am I getting a 'lighter' chemo now?"

http://annonc.oxfordjournals.org/content/early/2011/06/29/annonc.mdr309.full

If you Google ' Triple Negative and CMF' there are a few studies out there.

Hope that helps.

Best wishes
Catherine

Lulu34
Member

Re: help!

Tina I had E-CMF for my primary in 2009..... As far as I'm aware it's only given for primaries and hadn't heard anything about its use specifically for TNBC.... Even for CMF alone as anthracycline and taxanes are usually standard TNBC primary chemos but will do a bit of investigating...... Hope it does the trick though Katie.

Jojo the MDT will have all the results they need.... If there was spread to the bones it doesn't usually affect the treatment you would get for the recurrence.... Because its quite small tumour it's likely they will do surgery first and double check the pathology from that and will prob go back to the MDT with that info and bone scan results to decide if you need chemo or rads or neither or both.

Hope it's good news tomorrow Jo.

Love Lulu xx

Guest user
Not applicable

Re: help!

Hi Jo- fingers crossed the MDT meeting moves thngs forward in terms of your treatment plan. In terms of the recon, Im sure there would be an option of having a reduction on the other side if they are unable to match the size? Is this something you would consider? I know a few ladies who have had work on their 'good side' following expander recon. Im sure this would be an option with the other recon types too (although the op is much longer so it might not be an option to have it all done at the same time??). Try not to worry too much. Good luck xx

Hi catherine- hope you dont mind me asking you for more info on the CMF regime?? I have thought about cmf a few times but my oncs have never mentioned this as a viable treatment. I am stage 4- is the research based on primary ladies or secondary patients too? If you can direct me to the research I would be really greatful. Always good to have another (potential) treatment option, being triple neg 🙂 Good luck with the rest of your treatment xx

Katie61
Member

Re: help!

Hi Jo,
Sorry to hear what you are going through. I had a local recurrence of Triple Negative BC last June, 3.5 years after original DX. It's a big blow and the waiting for scan results is incredibly stressful. Fingers crossed all will be OK. Like you, my recurrence was very close to the original tumour. I didnt have any spead, thankfully and it was only 7mm - previous one was 2.6cm

I had a mastectomy and reconstruction in July. I went for the LD procedure as the one using tummy fat, while appealing initially, has a longer recovery time, but your surgeons will guide you.
I am on month 5 of a 6 month course of a chemo combination called CMF. Its a very old regime but recent studies have found it effective in Triple Negative, so I am hoping this time it will nail it for good.

MDTs are Multiple Disciplinary Teams, so the surgeons and onoclogists are involved in creating an overall treatment plan.

If there is anything I can answer for you, please ask!!

Best wishes

Catherine

darlojo
Member

Re: help!

Hi,

had the CT scan today and they are doing the bone one this friday. My hospital holds these meetings each tuesday mornings called "MDT's" and I'm going to be discussed tomorrow but surely they wont be able to come up with a plan of action as they wont have all the results etc. You're right in what you say the waiting around is horrendous. Will someone give me a masterclass in reconstructions, I thought there was the LD flap from the back, the one where they make the boob out of the muscle from the tummy, what troubles me is that my boobs are 34E so I'd look pretty stupid with a new boob made from my tummy muscle (which I guess wont be as big as a 34E) and a normal one (well, I meanly droopy but normal!) can someone fill me in - thanks x

Guest user
Not applicable

Re: help!

Hi jo,
best of luck for tomorrow. Awaiting scan results is beyond stressful so I really hope they fast track things for you. Definately get some help lined up for after your surgery. My little boy was 9m old when I had my mx, node clearance and recon. I was really sore for the first week or so but healed pretty quickly. I had expander recon so a much shorter op than some of the more complex flap ones. I imagine your little boy will be pretty active and mobile so you will defo need help as you won't be able to lift him for a few wks. It was a little easier for me as my little man wasn't quite mobile. You will also want to get plenty of rest to aid recovery.
Let us know how you get on this week- hope it goes as well as poss 🙂
Tina x

Lulu34
Member

Re: help!

Jo good luck tomorrow.... I really hope they dont keep you waiting too long for the results.... I managed to find out my bone scan was normal as the scanner was an old freind of my sisters and when I had my ct I asked how long it would take to get looked at.... Was told it would be available after 4pm the same day so phoned the prof and asked him to check the results and hey were normal too.

I was so sure my liver ct would be abnormal as had deranged LFTs but it wasn't... So I'm keeping my fingers crossed for you xxxx

Can't help with the mx but know that implants have a quicker recovery than flaps but often need to have more follow up surgeries....

Would you be able to get help looking after your baby? Because no matter what surgery you have your likely to feel pretty sore for at least a couple of weeks.

Lulu xxx

darlojo
Member

Re: help!

Hi,

thanks girls for the support. My god lulu, you've been through the mill! its just so wonderful to meet other ladies or here who get through it/going through it and are such an inspiration. Dreading my scan tomorrow but obviously know I need it to determine exactly my course of treatment. I know I defo need mx so any advice from anyone who had had one (I'm thinking of dealing with a 13 month old baby) would be great. Jo x

Guest user
Not applicable

Re: help!

Hi Jo, long time no speak. So sorry to hear you've had this happen to you. I'm gutted for you honestly. I recently had to have a suspicious lump (same boob as before) biopsied and the stress and worry is horrendous. Mine turned out to be a ruptured cyst with fibrosis but they are going to MRI again in three months. I really hope everything goes alright for you and you get the damned thing zapped. Take care xx