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New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

36 REPLIES 36
Kath999
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Dear Wolvesgirl,

 

Keep in mind that TN responds well to chemo. Better than hormone+ BC. Over 50% of TN ladies have a complete pathological response to the chemo, so the tumour has gone and in those cases, the prognosis is hugely positive. I of course have had a glitch with my first chemo, but I have had a response to the second. I believe it's just a case of finding the right one and my oncologist says there's plenty in his arsenal, so not to worry!! Now that I'm heading into surgery, I have to believe that whatever chemo he uses post surgery, will work for me and mop everything up. I am keeping my fingers crossed that my nodes are still cancer free.

 

Anyway, stay well and positive. I'll be in touch soon xx 

Wolvesgirl
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kath

Thanks for the prompt reply and happy Sunday to you too - I will mention it tomorrow as I am sure he/she will know what I am talking about.  I agree re the other one - the randomised/blind/control thing is too much of a risk to play around with when TN is involved.  Like you I am really anxious about the doom and gloom picture of TN but have not looked at Google or anything other than here but every time there is something in the press about it the word "aggressive" jumps out.  Again, my surgeon was really laid back about it and said the same as yours in terms of the difference - the only issue I guess is that for the hormone positive cancers there are more treatment options than we have.  I had heard about the book - Shi recommended it - I will get it I think.  Thanks for your support and good luck going forward - I am sure we will keep in touch. xx

Kath999
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Happy Sunday Wolvesgirl,

 

My oncologist mentioned 2 trials. The first sounded like Russian Roulette and I immediately said no thank you. You have an infusion of immunotherapy drugs every 3 weeks to try and stop recurrence however he said that after being randomised, only half will receive the actual drugs and half will not. Whilst I support the trials and the reasons for doing them, I cannot gamble as TN and high risk of recurrence/spread and resistant to some chemo; that I may not receive the drugs at all. He agreed with me and mentioned the 12 weekly blood tests. I said 'sign me up now'! He didn't say the name of the trial but when I return for chemo, I am sure it will be discussed and of course i will share it with you. I did ask how long you can have the blood tests for and he said as long as the trial runs, and some trials run for years. He said it can take 6 to 12 months for something to develop enough to be picked up on a scan, and by that time it's already with you, but the blood tests aim to recognise the mutations and stop them developing with the drugs.

 

I have absolutely freaked myself out about the risk of recurrence and spread with being TN. Everything you read is doom and gloom. When I spoke to my surgeon 2 weeks ago I expressed my concerns and she said that things are different now and the risk is about 3% and no different from hormone+ BC. Well, she blew me away and I left feeling much more positive.

 

I've just bought a book from Amazon written by Patricia Prijatel endorsed by a surgeon called 'Surviving Triple-Negative Breast Cancer'. I couldn't put it down and have read 3/4 since receiving it yesterday. It's worth a look xx 

Wolvesgirl
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kath

Thanks for the reply.  What a time you have had - and are still having - but I am sure the thought of getting the cancer removed is a positive one.  Surgery is not bad - I had to have two ops - one lumpectomy and then when they discovered that it wasn't, in fact, just DCIS, another for the node biopsy.  Neither worried me - I am fortunate in that I recover well from surgery and anaesthetics these days are so much better than they were in the past.  I sincerely hope that you have as good a recovery as I did.  Also I am so sorry that you have more chemo to go through after all you have already had.  Its a rubbish thing this.

 

I dont suppose I will be tested for the gene - I do not have children of my own (just lovely step children/grandchildren) but I did wonder about the familial thing as my father, his brother and their father all died around my age (gulp) of cancer although I suspect lifestyle choices were involved so I am not focusing on that too much.  I would be interested, if you have time, to know the name of the trial about the DNA mutations - I would like to mention that to the oncology team.  

 

I sound (even to myself) like a moaning minnie about the chemo - I am so lucky this was picked up and found early - we are all lucky there are treatment options and that we will be able to get on with our lives after a brief detour into the world of chemo. And if you think a 54 year old can be vain, try a 61 year old!  However, in my head I am still 30 so thats probably why. Good luck as you go forward and keep in touch to let me know how you are doing.  Us TN's need to stick together xxx

Cazwheel
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Wolvesgirl

 

Defo sounds similar, I’m waiting on one more result to establish if it was triple negative but regardless it’s out now. Just nervous as the chemo gets closer like you. Keep me posted on your progress xx

 

Caroline xx

Kath999
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Wolvesgirl,

 

I find myself in a similar situation to you. I was diagnosed with BC early March after finding a lump on 23rd Feb. I have stage 2, grade 3 TNBC and opted for neo adjuvant treatment, so chemo 1st. Due to my TN status, I was asked to take part in the ROSCO trial. 2 rounds of DC did not work, and my 30mm tumour grew to 40mm so I was changed to FEC-T.  I finished my 4th FEC 2 weeks ago and am starting to feel better. As other ladies have said, the side effects have been less than I imagined but the fatigue has been difficult. I've also felt very queasy after each session for around 7 days although this increased each time; had a horrible taste in my mouth and loss of appetite. 

 

I have been tested for BRCA1, BRCA2 and PALB2, all negative thank God as I have two boys aged 31 and 28 and my oldest son has just had a little girl. 

 

So what now, a lumpectomy and breast reduction 28th Aug. Unfortunately, as I have proved resistant to some chemo, I have now been told that I need another 4 sessions of chemo after surgery which was unexpected and a complete kick in the teeth; to be followed by 15 sessions of radio.

 

I have also been asked about another trial whereby I will have a blood test every 12 weeks to identify any DNA mutations, to then receive immunotherapy drugs to stop mutations spreading. I'm happy to be a guinea pig!! Immunotherapy costs mega bucks, and being high risk of recurrence, if I don't have to have that dreaded wait for each yearly mammogram they can do what they like to me!

 

I feel much the same as everyone else. I'm trying to stay positive, but have bad days on this rollercoaster that I really just want to jump off. Today is a teary day and I get so cross, and tell myself to get a grip and that makes me worse, so I allow myself the bad days!! None of us asked for this did we? I cannot think too far ahead, one step at a time.

 

Overall, whilst the fatigue has been surprising and hard, the chemo has not been anywhere near as hard as I thought it would be. I'm not scared of surgery either, I just want this damn thing out of me now. I'm quite excited by a boob lift but I will lose my left nipple; interesting!  Oh yes, my original node biopsy was clear and my tumour has started to shrink with the FEC but not quite enough, thus the 2nd round of chemo. My hair did start to fall out between the 1st and 2nd DC, so my hubby shaved it off for me too. I was initially upset but accepted that pretty quickly. I have completely lost eyelashes and eyebrows with FEC which has been pretty hard to take. Sorry to be vain but there it is. A 54 year old without eyelashes is not good!! I look permanently knackered! 

 

Sorry for the essay; I wish you and all these other wonderful warrior ladies love, hugs and peace xxxx

 

Wolvesgirl
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Cazwheel

Your situation is similar to mine except I am a lot older than you (61).  I have just had my date for oncology through for next Monday so whilst I hate the thought of chemo at last we are getting closer to starting and therefore finishing it.  It sounds like you will be around the same timescale as me.  I have been reading up about the side effects - I know these are worst case scenario but its making me a bit more anxious about it than I was - I just hope that the fact I am fit and healthy helps with reducing these to a minimum.  Good luck on your journey and hopefully we can keep an eye and a supporting arm for each other on here.  The forum is fantastic in my view for making me feel less alone with this. x

Cazwheel
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi 

I’m 38 with a 10 and 7 year old and was diagnosed on the 4th July with grade 3 duct BC. I was offered a lumpectomy with radiotherapy and like you I was desperate to avoid Chemo.  I elected for a mastectomy and they removed 3 lymph nodes during the sentinel biopsy.  I’m quite tired since my op which is hard as I’m usually so active. 

Luckily I got my results last week and the cancer is out with none detected in my lymph nodes. However due to my age they’ve recommended chemo as a preventative as it’s not hormone or any other type. Just to make sure they got it. 

Since diagnosis I’ve gone from dreading chemo to willing to take anything on offer just to survive.  I should hear of my start date for chemo in the next week or so. 

Try to keep positive and remember whatever they offer is to help get you well.

Caroline x

Wolvesgirl
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim

 

Thanks for the reply - I am sorry to hear you had a blood clot but hope that the treatment for that has been successful although I would imagine you have to be on it for a while?  Its not just the planned chemo but all the potential complications that can trip you up on this journey.  However, as you say having a positive attitude is key.  I am just waiting for my oncology appt now but trying to get ahead of the game by making an appt at a local salon that does wigs (just in case the cold cap doesn't work), I have had my hair cut ready for it all as well.  Today I am doing some research into what to expect (potentially) and what I need to buy.  I am finding that having days off from cancer (not that I can stop thinking about it) is working for me - some days I don't come on the forum or read the information etc - which is a bit of down time from it.  I am trying to keep busy as well - in some ways I wish I was still working (never thought I would say that).  Keep well and in touch

 

Dee xx

Kip
Community Champion
Community Champion

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim, sorry for the delay, I've been away.  The node clearance was OK,   had a drain in for a few days afterwards but I'd had one for my mastectomy so was used to that.   It has left me with a completely numb armpit... Very odd when putting on deodorant!   You have to do exercises to get the arm moving again but I have full movement now and although I got a small seroma (fluid filled lump). It went down with massage.  All in all its back to normal really,   they opened my original mx scar to remove them so I've only the one scar too.

KIP

XX

Kimmypru
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Wolvesgirl,

I’m so pleased your nodes were negative. Chemo will probably be FEC-T which is what they usually use for TNBC.  Like you my Specialist said they had caught it early and although I had one positive node they were confident it hadn’t spread any further, so I have everything crossed.  I braved the shave as my hair started to fall out, I’m not sure of the success of the cold cap as everyone responds differently so keep me informed.

 

I would love to keep in touch as Buddy and maybe offer some advice re: Chemo as I’m slightly ahead of you with treatment and general chat, lol.

 

Kips advice has been invaluable and she is great to chat to.

 

Positive Mental Attitude is key, you will have good days and bad which is normal as this is a huge rollercoaster ride (I hate rollercoasters and can’t wait to get off, lol).  Take each day as it comes, any worries just call your team or the emergency helpline, don’t ever leave it too long.   I’ve used the helpline twice now within a week and was admitted to Hospital where they found I had a blood clot, Dont ever think that your wasting their time which is what I always think but I went with my gut instinct and I’m glad I did. 

 

Take me care and keep in touch.

 

Kim xxx

Kimmypru
Member

Re: Kimmi Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kip,

Thanks for advice, really appreciate it.  FEC hasn’t been too bad except for the sickness and tiredness, my nails are ok at the mo, had to have a piic line put in over two weeks ago and I now have a blood clot so having to inject everyday for the next six months.  If offered I will more than likely have full node clearance as well, did having the nodes removed cause you any problems? 

Kim xxx

Wolvesgirl
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim

 

Many thanks for the reply - I saw it this morning when I came on the forum feeling sick with anxiety about my appointment today.  Whilst not a MH professional I retired a year ago from nursing and would consider myself to be a robust and sensible person - not so sure after this experience as I have never felt such high levels of anxiety before!  Anyway, like you I am now officially Grade 3 TNBC with negative nodes.  So good and less good news although the surgeon and the BCN were really not downbeat about the TN thing - just said that it has less treatment options but that didn't mean it doesn't respond to treatment and that the fact it hadn't spread and was caught early on mamma was positive.  Like you, I am going to kick its a**e!  So referral will be taken to oncology tomorrow, hopefully seen in 2-3 weeks and then start chemo ?last week of August.  I point blank refuse to lose my hair and have already had it cut in preparation for the cold cap and have another appointment in August with my lovely hairdresser to make sure its as ready as it can be. 

 

We didnt discuss the gene test (I forgot to be honest) so I will ask oncology.  Lots to get through I know but I feel better with a plan in place.  Its a long road isn't it?  If you want to keep in touch as a TN buddy through the forum I would love that  but understand if not.  Take care of yourself and we will beat this.  xx

Kip
Community Champion
Community Champion

Re: Kimmi Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi me again,  can't remember if I said before but I had full nose clearance after chemo finished and none of those left were affected which helps with the mindset to know they took them away I think. 

Kip
Community Champion
Community Champion

Kimmi Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim my,   yes I had FECT x 6 too. I have to be honest I was dreading the T as had heard dreadful things.  The sickness was much less on T.. And any SEs started later in my cycles, about day 6 for me.  Usual things tiredness and yucky mouth.  I got very sore tongue coated with white thrush and ulcers.   Advice fir you... Keep using salt water to gargle and if your mouth starts feeling yuck get in the phone and get fluconazole to take.  I let mine get really bad before seeking help.  I got the thrush me every cycle then and took it regardless and was much better.  Sore fingers and feet can be common or numb fingers and feet.. My thumbs were numb but it went a away once chemo finished.  Always tell your team if you have numbness as they will adjust the dose. T seemed to affect my nails too,  keep nail polish in them,  mine became very brittle and had ridges.   My nurse said the first T is worst as your body still has Fec in it and she was right cycle 5 and 6 were better.  As always lots of ladies find it better than Fec.. I just found it different.  Good news was hair began growing about end of cycle 5.   Not sure how you get your Fec,  I had mine fed through a cannula by a nurse,  the T was a drip for 1 hour which was better.  You'll get through it.. Again always ring the hotline and don't forget about the mouth..

Love Kip

Kimmypru
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kip,

Couldn’t agree more about the node thing, it will eat you up if you let it.  I was told that the node that was positive was like a gatekeeper and that as you said it was doing it’s job.  I don’t really understand the node structure except that there are lots of them and that they can also be removed.  I am eligible for the POSNOC trial but I’m not sure if I will take part as treatment is randomised so don’t get a choice of to treat all nodes or not and if other nodes are affected then I know I want them out of my body. 

Heatwave a breeze with no hair(lol). Kip I was just wandering if you had the same Chemo as me and how you found it especially the T part,  I’m on FEC-T.

Kim. Xx

Kimmypru
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Wolvesgirl, 

It’s sounds like you are in a very similar situation to me and I really hope the nodes are clear for you but as Kip said in her post don’t get too hung up about it otherwise you will go stir crazy worrying.

Even though you’ve not had Children (as far as I’m aware) they may still offer you the chance for genetic testing. My test is due in Sept so not long to wait, I’m not sure if it’s positive what the outcome will be but I know that lots of ladies with the defective genes go on to have Part or full mastectomy as an extra preventative before or after Chemo and Rads depending on grade, size of tumur etc.  I haven’t looked up too much on TNBC as everyone’s journey is different and I just need to take one day at a time, whatever you do don’t google as there is so much outdated info on their, just listen to your Oncologist and specialist breast care team as they are the experts and are brilliant. 

I was diagnosed in May this year and it’s been non stop with appointments, Surgery, and Chemo so far but know I need it all to kick its ass. Have you started Chemo yet and when do you get your results of nodes? 

Keep me posted and good luck with everything.  I’m here if you need to chat about anything.

Kim xxx

 

Wolvesgirl
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim

 

I have read your post with interest as I think that I am in the same position as you albeit a few weeks behind you. I had a similar sized (11mm) Grade 3 excised in June with good margins but as they thought it was DCIS initially I had to go back to have three nodes removed a week ago.  I am now waiting for next week when I hear whether the nodes were involved (keep your fingers crossed for me) and what the hormone status is, but all indications so far are that its triple negative sadly.  I am post menopausal (bit older than you) with no children so probably won't need the genetic testing I would imagine.  My question was that in an earlier post you mentioned that there was a possible discussion about mastectomy presumably after chemo and rads.  Do you mind me asking if that was the case or was it agreed that you would not need this?  

 

Your pragmatic approach to your journey is inspiring - I hope that I can be so too!  Not looking forward to chemo but pretty much resigned to it.  Radiotherapy is something I think I will be OK with I think.  I just need to know what I am facing so I can get on and deal with it.  This has been a long road so far but no complaints about care or service - all brilliant. xx

Kip
Community Champion
Community Champion

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim,

Thanks for the reply.  I too was fixated on the node thing.. its hard to get your head around isn't it.  I was sure it must have spread but the docs all said it means the nodes were doing their job and the fact it hadn't got any higher was good, so I focus on that, but it takes a while to get your head around doesn't it.   I still panic sometimes when I read that others had clear nodes but hey, if I've learnt nothing else in this journey, its that cancer does what it wants and forms differently for everyone.  We just have to go along for the ride and take each day at a time.   I'm glad you braved the shave and have found it to be ok, it is a very hard part of this treatment to come to terms with, but I found that once it was gone, I could focus on something else, and in this heatwave its so much easier!

If/when you come to have rads, I didn't find them too bad, after chemo anything was easier.  I didn't get too many SEs, a small patch of red burnt skin (bit like sunburn) but otherwise pretty much ok, a bit tired, don't know if that was still hangover from chemo though.  Its just the physical travelling to and from hospital every day, I had 15 sessions. So Mon-Frid then weekends off.

Good luck with the 2nd FEC, hopefully you'll know what SEs are coming and when and be able to deal with them easier this time.

Take care

Kip

x

 

Kimmypru
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kip, 

Wow you’ve been through the mill and now out the other side with fantastic news, I’m so pleased for you I shed a few tears of happiness for you.

Im currently due my second lot of FEC-T Chemo tomorrow, 4 more to go and counting, hair started falling out last week and took the decision to shave it off, what a relief and really looks quite good.  Had to have PIIC Line inserted as vein in hand really painful.

I was diagnosed with TNBC Grade 3 IDC in May this year, had Lumpectomy, removed 12mm tumor with clear margin, 3 SNodes removed 1 positive for cancer cells and the other two clear.  I will also be having Radiotherapy after Chemo but unsure at the moment about how many sessions and if they will do removal of any more nodes.

I am concerned that I have the one node with cancer cells in it and the thought that it may of spread has caused me major anxiety but I know I’m probably overthinking it as Consultant stated they were confident it hadn’t.  

I find the forum and everyone’s journey inspiring with loads of advice and positivity which definitely helps.

Good Luck for the future and keep us all posted.

Kim xxxx

 

MummyDuck
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Thank you. I just need to get this horrible waiting to find if I need more surgery bit out of the way before I can get my head round anything else. Still having headaches which is sinusitis apparantly but the tension is most definitely a factor I don't doubt. I will be back, just when I know more of what I'm facing on the next stage of my journey.

 

Love your post Kip, thank you & congratulations ❤

Kip
Community Champion
Community Champion

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Sorry meant to add... I am ER+ so on Tamoxifen for 10 years too.. BUT...Just had my first mammogram since diagnosis and ALL CLEAR... one year done.. so another positive story for you.

Kip
Community Champion
Community Champion

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Just had to reply to all your posts!   What wonderful, positive and inspirational ladies you are.  All of you in the same terrifying place as I found myself last year and all still writing such positive posts to each other!  Brilliant!   I've been through single MX (no recon), SNB (3 nodes taken - 2 positive 1 micromet), 6 x chemo (FEC and T) and then an ANC clearance (all remaining nodes clear) and then 15 x rads.. so had the whole shebang!  It does seem a long journey when its laid out in front of you, but take it one day at a time and one treatment at a time and you'll do it.  If you end up having to have chemo (as one of you rightly said).. the thought is far worse than the deed for most of us.   I managed to keep working through (from home but hey I still worked) and did go out and about and enjoy life still.  Even went to the theatre with a drain tucked away in my handbag after surgery... was hoping they wouldn't search me.. might have proved embarrassing!

 

Mummyduck - you are probably not reading these posts now.. but hopefully if and when you return.. we are here for you.

 

Keep on with the positivity...and if you find ourselves having to have the old chemo.. find your corresponding monthly thread and you will make many new friends who are going through it with you..

 

Big hugs to all

Kip

xx

 

 

Joemic
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Amanda, I also wish you all the very best on your journey. I hope my post did not cause you anxiety, my intention is to only help people realise that chemo may not be as bad as what they may think.

Joemic x

3331melanie
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Amanda - I wish you all the very best.

Mel 🤗

MummyDuck
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim,

Sorry to hear your news, really feel for you in these scary times for us.  Worrying about passing it on to my girls is something I'm sure we all worry about so to be facing the testing for you now must be difficult for you all, my heart goes out to you 

 

I'm afraid I'm going to get off this bridge now as it's too much information overload that I didn't particularly want to face right now, I'll look into chemo threads when I need or want to but like I said, that's just not yet so this thread isn't the right place for me anymore. Sorry about that, I wish you well though & maybe I'll see you back here when I'm ready to know more

 

Truly wish you the best 

 

Amanda x

 

 

Joemic
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim

 

Not the news you would have wanted but at least you know what you are facing (none of us want any type of BC diagnosis but alas we all have), at least being part of a trial has benefits in that they will keep you under close monitoring. You've got a long journey ahead - well it seems it to me and I'm only half way through chemo so far, radio to follow. 

Only tips I can give you is to get your skin in good condition, if you have eczema get it under control before chemo starts as it dries the skin out alot.

Watch those feet, if you're getting new shoes get them broken in before chemo starts, any rough skin sort it out see a chiropodist if necessary. Any nicks on the feet can be a source of infection when you're on chemo.

See your dentist, just to check you're teeth are ok - chemo can be hard on the mouth making it sore - I haven't had that problem though, luckily.

If you do lose your hair, you will find that when the time comes the thought of it is far worse than when you actually shave it - it annoys you that much that shaving it brings relief to many. The thought of losing it really is more traumatic than actually losing it - it will grow back.

Be prepared for chemo brain, the thought process can get very foggy at times (remember that if you have to write any work reports - it makes absolute sense at the time but you wonder who on earth wrote that drivel a few days laterSmiley LOL.

Don't let the thought of chemo cause you undue anxiety, it isn't a bad as people think - I've found it very doable and hopefully you will too.Smiley Happy

Going to a public toilet will never be the same again - chemo doesn't only make the hair on your head fall out Smiley Wink and when you're hovering over those seats it can get rather wetSmiley LOL if you're not careful.

Now there's a thought to leave you withSmiley Happy, any worries give me a shout and I'll try and help.

 

Enjoy your holiday and stay positive

 

Joemic x 

Kimmypru
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Amanda & Mel, 

 

Welcome to the forum and I am so glad you could relate to my post and as Joemic says our emotions are only natural and most days my head aches from it all, I worry about my partner who is a rock and cries with me, for me and wishes it was him and could take it all away, I worry about my girls (26 & 23) and my gorgeous Grandson who is 8 going on 28 and how they are coping with it all, talking about it and having a little laugh about it when you can does help and having a Positive Mental Attitude is essential but this I know is easier said than done. 

 

Well results day was Thursday just gone (I used to like Thursdays but not anymore as I had my mammogram recall on a Thursday along with my biopsies and then my diagnosis was given on a Thursday) and I have been diagnosed with Triple Negative Breast Cancer Grade 3, a couple of positives were that the rim of the tumour showed no cancer cells and only the one (the Sentinel node nearest the tumour) out of the 3 lymph nodes removed had cancer cells present, Consultant was confident that Cancer hasn’t spread any further.  I will be having Chemo and Radiotherapy and they are going to put me forward for a new international trial to do with the lymph node (I will keep you all posted on what exactly this is and what it entails).

 

I am now awaiting an appointment to see the Oncologist to identify what Chemo I will be having and how long for but the Consultant did indicate that it would probably be 6 sessions, one every 3 weeks and then radiotherapy localised to where cancer is.  Unfortunately for me there is no other treatment such as Herceptin or the other hormone related treatments available as my Cancer is not hormone related.  Due to my diagnosis I will be tested for the genetic gene of BRCA1 & BRCA 2 and also something else beginning with P (not sure if it was PARP). 

 

If I have these faulty genes then my girls could have it and will be tested as they will be at high risk. Triple Negative BC is rare and from what I’ve heard most women have a full mastectomy to reduce the risk of reoccurrence as it is high but this is something that I will discuss with Consultant.

 

Going away for a week soon to take our minds off things or at least try....lol and also now working from home as and when I want too to try and avoid infection before I start any Chemo - very daunting prospect of losing my hair and as you say Amanda the brain hasn’t quite computed that it’s going to happen - but when it does I am going to shave my hair off before it falls out in clumps and send it off to somewhere where they will use it to make wigs for Children with Cancer.

 

Mel - hope surgery went well and that you are not too uncomfortable after it.  Amanda now you’ve reached out please don’t be afraid to ask any of us on this forum anything, as what we all have in common besides BC is the support that we can give each other by sharing our worries, experiences, sad & happy days, good & bad days.

 

Let me know how you all get on and keep positive. 🙂

 

Kim xxx

 

 

MummyDuck
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Thank you Joemic, your advice is welcomed & appreciated.

 

Mel, best wishes for Thursday. Here's hoping this is the last surgery before being able to move on to the next stage of treatment for us both. I've realised I'm a cross-that-bridge-when-forced-onto-it kind of gal so haven't yet faced the fear or reality of chemo. My brain won't compute it just yet.

 

Kim, I hope your appointment went ok. Thank you for posting & giving me a thread I related to very quickly here.

 

I'm pleased I've found my way to reaching out on here at last, it's very isolating in this slow motion bubble of waiting and I already feel comforted by finding people who I feel truly understand or like you say 'get it'. I actually saw a post on twitter today about a group of  ladies who all started their chemo together & had a group on here for their month & they helped each other through their treatment & beyond, which prompted me to come here & well, I don't know... save my sanity maybe? (Questionable whether i had it to start with lol) As an anxious over thinker, (even before cancer) I'm not very good at asking for help or reaching out but I'm trying to change that now I've found myself stuck on this particular bridge. 

Sorry we're all here but I'm glad this place exists 😊

Amanda x

Joemic
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Amanda and Mel

Your emotions and feelings are so normal, as women I think we spend so much time protecting our loved ones that we forget about ourselves. When we are faced with this dreaded disease our whole world comes crashing down and we are in a state of shock and disbelief. Waiting for test results is torture and very difficult to cope with, the people who truly know what we are feeling are our fellow forum members, it doesn't matter what grade, type of BC, stage or treatment regime we have, we all 'get it' we all go through the same emotions and we will all help each other through.

We can rant, rave, be honest with our feelings without upsetting our loved ones on here, we can also ask any questions we want and it is true - there are no such things as a daft question, if you're thinking it you need an answer to it so ask away.

Whatever you do don't suffer in silence, let us know and we will support as best we can.

 

Best of luck for your treatments.

 

Joemic x

p.s although I do seem positive most of the time I do get bouts of anxieties and worries, as I said we 'get it'

3331melanie
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Amanda

Our stories sound quite similar. I am 45 and was diagnosed with grade 2 IDC in April. Had lumpectomy and SNB on 9th March. After what feels like an eternity waiting for results, I now have to go back next Thursday to have more tissue removed as one edge didn’t get a large enough clear margin. Node biopsy showed isolated tumor cells. I was upbeat until that point, hoping surgery would have gone well and that I could move on to radiotherapy and hormone therapy. The consultant is now requesting oncotype test because if my age and dus used possibility of chemo. The thought of chemo terrifies me and I’m not relishing the thought of more surgery 😢. And then the waiting game for results......

I totally relate to your feelings. Life seems to go on around me and Im stuck in this world dominated by cancer and I can’t escape it.

Anyway, I wish you well with your treatment, would be nice to keep in touch as our stories sound similar.

Mel x

MummyDuck
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kim, 

I am new to the forum, not sure why it's taken me so long to read other people's stories but I think I 've tried to just cope & am not doing so well at the moment to be honest. Your post seemed most like my  current diagnosis so thought I'd reach out here, hope that's ok.

 

I was diagnosed with grade 2 stage 2 Breast cancer on April 2nd after finding a lump early March then waiting for breast clinic appointment & biopsy results. Had lumpectomy May 9th to remove 22mm tumour & Sentinel Node. Was then upped to upped to grade 3 although my Node biopsy came back negative thankfully. Just had 2nd surgery on Wednesday (5th June) to remove more tissue & nipple tumour. Now have to wait again for results. Also waiting for Oncothingy  (??lol) to decide on if having chemo although my surgeon seems fairly certain I will as I'm 46 & pre menopausal.

 

The constant waiting is an absolute nightmare & the last 3 months have felt like  i have pretty much stood still while the rest of the world around me is whizzing past with life as usual (which I've actively encouraged for my husband & children to have a sense of normality). Some days are OK & I do feel optimistic still as the treatments & specialists are so amazing but this surgery has really knocked me for six  after just getting back on my feet from the last 1. I'm exhausted physically & emotionally & have had a headache since yesterday which isn't helping. Don't feel like talking to anyone at all & even though my husband is doing all he can to help. I can't help feeling upset each time he says "what's wrong?" because I'm so quiet. Like, I know what he means but how do I even answer that as it seems so obvious? I have 3 children (20,18 & 10) who are so lovely but keep constantly asking if I'm OK & I don't want to say no so I smile & say I'm fine. This is why I've turned to here now, I don't quite know how I'm supposed to be positive or brave at the moment when I just don't feel either right now, what do I say to my loved ones without upsetting them or being 'negative' ?  *Sigh* cancer sucks! Sorry for the essay.

Amanda x

Joemic
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

What a spoilsport your consultant is, could've done the D instead of the DD at the very leastSmiley LOL.

 

We seem to be similar in a few ways - I'm 53 (so only 2 years above you at schoolSmiley Very Happy). I work in the Learning Disability field and have done so since being 16 (can't bring myself to say how many years that adds up to - it's too shockingSmiley LOL) - love my field and wouldn't change it for anything, we also have a fair amount of mental health issues within my peeps so work is always very interesting - love itWoman Very Happy.

 

I had that coughing virus middle of last Dec and felt pain in my right breast - took a trip to the docs who thought, like me I'd pulled a muscle. Fast forward I still had a twinge beginning of Jan so went back to the docs - just to check. She examined me, couldn't feel anything and my chest was clear, she said she really didn't think it was anything but would it be ok to refer me to the hospital. Not a problem I said, I presumed I was a 'cysty' person as I have had a few removed (all on the skin) and had one removed from under my right boob last year. And here I am undergoing 6 x EC with radio and hormones to follow.

 

My tumour was initially thought to be 5mm but following surgery was found to be 9mm and they found 15mm of high grade DCIS very close to the tumour - they had said they had seen some DCIS on the mamo but wasn't sure of the extent. I had x 2 surgery's - the first showed one side of the dci was still positive so had to return to surgery - they didn't find any cancer cells in the 2nd - that op was called a cavity shave.

 

I started out very positive but the whole waiting and testing did take it's toll and I was floored when the oncodx score came back as 40 and had to have chemo BUT I don't stay down for long and am upbeat again now, that might be because I was absolutely terrified at the thought of chemo Smiley LOL, you hear so many scare stories but I have had 2 cycles so far and have hardly suffered any side effects - just a bit of ongoing pain in my vein. Side effects may well get worse but at the moment I feel blessed that I haven't suffered. My 3rd is next week and that will mark my half way point - hurrah:very-happy:

 

I've got a normal coloured wig, I don't wear it much but have also got a pink wig and a blue wig - just to embarrass the kids with when we go out - all good natured of courseSmiley LOL, I'm going out for a meal with my manager and ex manager next week and plan to wear my blue wig, can't wait to see their facesSmiley LOLSmiley LOL - mind you they know I'll be up to something because they know I won't let this bl**dy BC thing rule my lifeSmiley Very Happy

 

I wish my journey always makes me turn right out of my house because if I turn left it takes me to the hospital which is a 10 min walk from my house and very visible all the waySmiley LOLSmiley LOL

 

Definitely keep me posted and good luck

 

Joemic x 

Kimmypru
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Joemic,

 

Thank you so much for replying and sharing your experience and for making me laugh (re not having to shave - a bonus for any woman).  I get my results 06 June so will keep you posted. I am also over 50 (51) and post menopausal, was hell of a shock after routine mammogram to be recalled as they had found a lump which I couldn’t feel as it was set right back in the breast behind my nipple.  Tumor was 13mm, grade 3 fast growing, now removed along with some nodes which Consultant said looked benign but won’t no for definite until results day. Lymph node biopsy showed no cancer which I’m assuming is a good thing! 

 

I work in Mental Health and have done for 26yrs and very good at giving advice but not very good at taking it and I did not realise how much a diagnosis of Cancer would affect me mentally.  I’m sure it’s the same for others and agree that the waiting for results/ not knowing is the worst part of all of this and appreciate everyone’s journey will be different with it’s own challenges.  I’m a very positive person with a positive mental attitude and always look on the bright side, even to the point I asked the Consultant to insert a pair of double D’s during my Lumpectomy (not that he did-spoil sport)and told my partner that if I have Chemo he’ll get to spend everyday with a different woman according to the colour of my wig...lol...

 

My partner, two daughters, friends and work colleagues have been amazing in supporting me through this journey which really helps, I just wish my journey would take me to the Maldives instead of to the Hospital and instead of lying on a hospital bed I could be lying on golden sand basking in the sun......

 

How is your Chemo going and more to the point how are you?

 

Kim xx

 

 

 

 

Joemic
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Sorry I forgot to say : I didn't get any headaches following surgery but I did feel tired for about a month. I found the soreness under my armpit following the SNB the worst and that took a couple of months to go away. I have no pain there now but it is numb in parts - I had to be careful when I shaved there as I couldn't feel the razor. The one positive about my chemo is that I don't have to bother shaving armpits or legs for a whileSmiley Very Happy

Joemic x 

Joemic
Member

Re: New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Kimmypru and welcome to the forum, not that anyone wants to be here but here we are, it's a great forum for airing worries and seeing how others cope.

 

To answer your question - My BC is Grade 3, it is also ER positive (8/8) and HER2 negative and node negative. It depends on your hormone and HER2 status, your age, node status and whether you are pre or post menopausal as to what treatment regime you will be on. Don't worry it all sounds so scary and all the abbreviations can be confusing but you will soon pick it up.

Because I am ER positive, node negative and HER2 negative I was offered an Oncotype dx test which gives you a score as to the chances of recurrence and the likely response to chemo. As I am over 50 years old a score of 25 and above would indicate that chemo would be beneficial - my score was 40 so am currently undergoing chemo. I know other ladies who have Grade 3 tumours and their scores indicated that chemo would be of no benefit to them so didn't have it.

 

It is a very stressful time waiting for the results from surgery but until they return, they cannot give you a plan as they don't know exactly what they are treating. As difficult it is waiting, it will be better in the long run so you don't get false hopes. I was told at diagnosis not to worry it was small so they would get it no problem, following surgery, even though it was grade 3 the surgeon was confident I would only need radiotherapy and i'd be finished by easter and here I am undergoing chemo until aug to be followed by radiotherapy. I don't blame them for raising my hopes only to have them dashed each time but I do appreciate why some surgeons/oncologists don't want to say anything until they have all the results in front of them.

 

I really wish I could tell you not to worry but we all do no matter what, it's such a shock when you get the initial BC diagnosis, never mind the continued anxiety waiting for tests, results. Have a look around the forums and post questions on any of them, someone will answer you. Give me a shout if there is anything else I can help you with regarding the Grade 3 and I'll do my best to help you.

 

Joemic x

Kimmypru
Member

New to Forum - Recent Lumpectomy WLE/SNB - Headache and Extreme Tiredness

Hi Everyone,

Just wondered if anyone else has experienced extreme tiredness and a permanent headache since having surgery.  Recently diagnosed with Grade 3 BC and waiting results from Surgery as to next stage of treatment. Petrified of what results will be but need to know to move on, feel useless.

Does anyone else have same diagnosis and know the likelihood of having Chemo for Grade 3.

Thanks for reading and I’m really hoping for a reply from anyone wishing to listen and shar3 their own experience. 

Kim x