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Think my lump is getting bigger, waiting for treatment plan.

45 REPLIES 45
MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Mary
Hope everything is going well for you.

I had my planning appointment for radiotherapy yesterday and now have a right breast covered with black felt tip pen and three virtually invisible tattoos - hope they can find them on the 29th when I go for my first session!

The oncologist still doesn't have any info on my hormone status and says I may not really need the Tamoxifen - he feels the side effects may outweigh the benefits - my feeling is " If there are benefits, I want them!" but I did read that radiotherapy prevents Tamoxifen from working so I'm not sure what to do - think I will continue until I get back to see my surgeon on January.

Two weeks until our first grandchild is due - my other half has been sanding and varnishing my old cot for when they come to visit - my parents would have been so proud (it was my cot and we used it for both our daughters) - doctor says 2/5ths engaged so things seem to be progressing well - now just have to hope that their financial details haven't been leaked by the government!!!!

Best wishes
Maddy xxxx

suebeth
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

oops - the keyboard went its own walkabout there - I was balancing it on my lap...sorry anyway just as well...I was beginning to ramble...

take good care of yourself Mary,

hugs and good thoughts, Suex

suebeth
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Mary
hope all is getting easier with you..
just wanted to add best wishes before I head south for the MRI+biopsy that will hopefully say my primary is in the breast...this certainly takes us to the edge of wq1`2

suebeth
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Mary...

I'm sorry your comb is bringing news you'd rather not get thankyouvery much 😞

You are further along the healing route than me, so I don't know how that feels yet ..but there's no doubt this hair loss is a downer for sure... better to cry than bottle it up though... have you a close friend who can be right beside you at these wobbly times? The breastcare help line organises buddy's so you can speak to your own buddy on the phone...someone who's been there and done that and got lots of tips and strategies.. and possibly even the T-shirt.

Step by step... if you are tired rest up, or watch a feelgood film even if you doze off during it... go gently with yourself - you are doing a great job coz healing is hard work = even for us women well used to hardwork and multi-tasking!

Glad you told me about the DIsney shop - guess where I'll be going first next time I'm in aberdeen :))

America must seem very far away at times. My aunt lives in Saudi and although I can send emails through my cousin...I know it's not the same as a family hug and you have a big family so it must be mighty tough at times for you especially if you are putting on a brave voice for them over the phone.

Keep planning that holiday, it's something good to look forward to. I'm going back to Venice with my daughter next year - we went 8yrs ago and I didn't go on a gondola ...so this time I will!

good thoughts + hugs sent your way Mary

Suex

ForumMember
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Mary

It was on the 13th day my hair started falling out too (I too had AC - which just finished yesterday). By another 5-6 days I had a big bald round bit on top of my head and it was getting bald behing my ears. I too dreaded shaving it but one day just woke up and knew that was the day - got my oh to do it. The tears were streaming down my face the whole time and I didnt look at it until after he had gone home. Some days its worse looking in the mirror than others but I just try to keep myself feeling feminine with make up etc.

Have you heard about the look good feel better course they run at ARI - if not speak to your bc nurse about it and she will give you a number to book on it. Basically its a make up course with lots of hints and tips (if you are into that) which is run by the cosmetic industry with ladies coming from various counters of boots and debenhams. And the best thing is you come away with a goody bag full of make up from cleanser right up to lipstick, eyeliner etc etc.

As far as the chemo thing goes - I too used to go to the gym 4 times a week but gave up my membership when al this started as I did not have the energy. When I do feel ok I have walks along the beach with my ipod on which is really therapeutic. But you sound like you are doing the right thing by listening to your body - thats the best thing you can do.

Hope your coping ok
Take care
Fiona
x

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Yeah, with this thing you lose control of just about everything. It can be so frustrating.

Me, I haven't felt like not eating - not yet. Mind, I'm just on my first cycle. I'm trying to eat things with plenty of iron and protein. Make sure I eat some sort of meat every day. I'm hoping that will help with the red blood cells. I had thought once the kids had got settled in to school and the routine, I would start going to the gym at least one morning a week and go swimming, too. Well, that is out the window. The last five days I've been too tired or weak to do much of anything besides the school run. I think today I might be feeling not-so-tired again. But this morning I had to admit that just a bit too much hair was in my comb and brush for it to be normal. Day 13 and my hair is definitely starting to go. I'm not ready for the shave yet, but it can't be too long off. I got a bit emotional. That surprised me, as I've been very matter-of-fact about it. I think when I have it shaved off, I am going to cry. I didn't think I would until this morning.

There is a Disney Store in the Bon Accord Centre in Aberdeen. It is in the corner, next to Woolworths. We get lots of presents for the kids there. Son is into Cars big time, and daughter loves any of the princesses. Every now and then I get something for myself, and hubby has got me pjs or shirts there, too. I've been to Disney World in Florida twice, the last time ten years ago. The kids are just about at the perfect age. I had thought maybe next year we'd go, but we'll have to see how the treatment comes along. We wouldn't have gone before the October break anyhow. Or we might have decided to wait another year or two. We try to go to the US once a year to see my family. Most of them live in Indiana (hence the Hoosier in my screen name), which is a good distance from Florida/Orlando. I do have a sister who lives near St. Augustine in the northeast of the Florida, though.

I hope they find that primary soon and can get on with treating you.

Hugs, Mary

suebeth
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Mary, been having a wobbly couple of days...so sorry for not replying sooner... I've Mr Mac,,, his was the tues clinic and I wanted to be seen asap...he certainly knew as soon as he saw me that it was a 'nasty'... so I have to trust that he will move quickly. He said that night I would need surgery to remove 'nodes and more' sasp...so I guess thats their first thought...like mine...cut it out!!

But the primary is playing hide and seek and they wont start until they know the full picture... I'm so used to be in control of what is happening to me... like us all I guess..

Have you tried juicing veg and fruit for days when you are not feeling like eating or for an extra boost? My cousins wife in Austaralia had major cancer and major ops and she was sure it was the fresh juice of veggies and fruit that helped her fight it.. we can get so much organic stuff now too. Home made chicken soup is a winner if you like it... after my dx my dietician (I had been trying to lose weight - ironic or wot!!) told me to eat plenty good quality protien - eg chicken and fish.

It's a fight for sure...but as you say ..a step at a time...

It will be hard to rest when the children are at home - hope you have good friends and neighbours. Thank goodness for curling up on the sofa with a good film - I was very ill when my daughter was 7 and the sofa became a place of great comfort for us both..she watched the screen and I snoozed 😉 I used to make up a flask of hot choc and we would sip from tiny coffee cups...

I've never been to Disney or the shop - but I love the style and the feelgood- ness of the old cartoon films.

Take good care of yourself Mary, let us know how it's going, and thanks for sharing... it helps a lot

Sue x

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hiya Sue.

The waiting it horrible. I hate it. I bet we have the same surgeon/consultant. Do you have the prof?

It is easier now that I'm having treatment. When I thought I was having surgery first (because they told me that was what we were doing), I thought "in x days the cancer will be out". I was still very worried about how big the surgery was going to be, because they'd told me anything between lumpectomy w/nodes and a double mas with immediate reconstruction. I have two little kids - up to ten days in hospital!!! But I was thinking, what must be, must be.

Then they said if surgery first it would be a masectomy, but they feel fairly confident they could shrink it with the chemo, and start in just a couple of days. Well, it was a whirlwind, but I felt better about that plan. Now I know if my body keeps bouncing back, I'll have the chemo every three weeks and finish on Valentine's. I know that is a big if, but we'll do the best that we can. I know after the surgery I'll probably have rads and definitely hormones. That is on the back burner, but people ask me the specifics about that. Folks, let's do one step at a time!

I didn't make the Tinkerbelle bag. I got it from the Disney Store.

I hope you don't have to wait too much longer. Hang in there!

Mary xxx

suebeth
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

hi Scottish Hoosier,
glad the chemo went fine..bet that 60min wait was a scunner - no wonder you were wired up! I've heard these antisickness drugs are good so it's excellent to hear that you found them so too. Good to hear your right breast is okay.

I must get me a wee handy bag - reminds me of the handy bag I had when I went walkabouts with a toddler/baby! What do poor men do I wonder - they can't fit all that in their back pockets 🙂

Hope your friend is able to help with your daughter again -especially for when you feel tired and need a little shut eye.

I live on an island and so I guess thats why I had the news over the phone. If I'd been in Aberdeeen I'd have seen my surgeon form Albyn. He is also my surgeon in the NHS which is good. It was a shocker over the phone, but I called the next day to talk with another Mac nurse who is much more positive and able to explain things better. I carry a little black notebook.. otherwise I forget parts of what is said...

I'd 2 MRI's last week and have been sent home to wait for the date for an MRI scan with a core biopsy on the primary. The MRI results sound like something from an old B&W B movie... it's on the 'outer aspect' and 'further out from the (planet ) axilla'...

I can feel the armpit secondary getting bigger...but they say they have to wait for the whole picture before they do anything.

A cool head seems essential for this... that and patience...

Does it make things easier having dates and knowing what will happen next? I'm still in limbo and at times can't quite believe the diagnosis. But guess I'd feel the same if I won the Lotto!!

Ward 15 and a tinkerbell bag... when I do hear whats happening next I'll let you know and definatley keep my eyes peeled...by the way is this a bag you made yourself?

SueX

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Arrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrggghhhhhhhhhhhhhhhhhhh! I'm so sorry, Maddy. I really hope they get their act together and get on with helping you. (((((Maddy)))))

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi ScottishHoosier -

Just had the phone call to cancel tomorrow's planning meeting!!!!! Why am I not surprised?!*

New planning meeting now arranged for 20th November - to say I'm 'bothered' would be too polite to explain how I feel right now !!!!!!!!!!!!!!!!!!

Love Maddy xxxxx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Oh, Suebeth,

I don't know how I missed your message! I'm so sorry!!

Chemo was OK. I was a bit nervous and wired, tired later on. It might have just been the nerves. It took much longer than we thought. I guess as it was a quick decision to go on the chemo, the drugs weren't there at 10 when we were, they showed up about 11. They assured me in future they will be in the ward when I get there.

A friend got my daughter from school/nursery and kept her until about 1:30. That was a relief as we didn't get home until about 1. I was just fine on Friday and the anti-sickness drugs did their work. I was up and down on Saturday, took it yesterday and was OK except for a bit of heart burn. Hadn't had that since pregnancy. Today I've been fine.

I should be eventually getting a follow-up ultrasound and/or MRI to see if the chemo is shrinking the tumor. If not, they will switch me to Taxotere. They said the MRI is extremely overbooked, so even knowing I might need one nine weeks down the line, it might be touch and go.

In Aberdeen chemo is only done on the NHS, so I won't be seeing Albyn until my surgery. That might be in March or April. I'm getting chemo on ward 15, at the mo on a Thursday. If you get sent over there, keep your eyes peeled. I'll be carrying that Tinkerbelle bag for some time I think. It is great for carrying the chemo log book, notebook, anti-sickness drugs, hand cleanser and bottle of water for just in case. Oh, and a book!

I'm so surprised they gave you the results over the phone. I had to go in for mine. The only results I got over the phone were that it was oestrogen positive and, later after pestering, that my right breast was OK on the MRI.

Best of luck!!!!!

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi
Yes my sister in law is a great joy to all who know her. Sorry not to have replied earlier - been quite busy with my daughter's 'baby shower' - what a palaver - never had those in my day!!!!

Unfortunately the meeting wasn't what I was expecting- yet another doctor - just to answer more questions and fill out more forms . I have a 'proper ' appointment on Tuesday morning for planning.

They still haven't got my hormone status results - pathology on a go slow or slow growing sample I'm not sure - so I'm still taking Tamoxifen even though it may not be necessary - better safe than sorry I say.

Hope all goes well with you - I will update you on Tuesday after my next visit.
Love Maddy xxx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Your sil sounds bril! How did you get on today? It wasn't too bad, but I could be feeling really low in a week. I'll wait and see.

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Oops - forgot the stovies !
Maddy xx

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

I'm in for 11.30 - but only for a planning meeting - not treatment yet - sorry I'm not in Aberdeen - my sister in law is a riot and could have joined us - she'd have brought the hip flask of single malt, clootie dumplings, haggis and a great dollop of Scottish blether to fill the waiting time.

As it is - I'll be thinking of you when I'm sitting down here in Leicester.
Good Luck
Maddy xxx

suebeth
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

hi Scottish H - hope your first chemo goes well tomorrow and you manage to get to the show with your family.

Sounds like you have been through the mill! Glad it's all starting to pull together now. Hope the book is a good distraction... WWII... well that was a fight we won .. so good luck with this one. Hope you managed to get help with the family and you can relax when you get back home. Sounds like you might be able to get to the theatre too - I hope so.

Did you need another MRI? and how long did you have to wait?

I 'd my biopsy last week at Albyn - they saw me within a week of phoning - wonderful place. Unfortunately I dont have medical insurance - but I had to go that route as my local surgeon (on referral from my GP) had thought my armpit lump was nothing much and wouldn't see me til the 2nd week in December...yes I'm still working out how I'm feeling on that!
The Macmillan nurse phoned me this afternoon with the results - primary breast cancer, secondaries in lymph nodes.

Its good to hear you are happy with ARI - I'll be heading there myself soon I hope... and if I see someone with a TInker Bell messenger bag and a WWII book I'll say Hi!

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Oh, sorry Maddy. You're not in Aberdeen, are you?

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Ooooo, what time are you in for? I'm in at 10AM. Hubby will be with me. I'll probably have a Tinker Bell messenger bag with me and a book about WWII. Oh, and a sports bottle of ice water, if they let me drink it! A friend recommended it to prevent mouth ulcers.

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Happy Hallowe'en !
Surprise, surprise - today I received the letter from the hospital telling me about my appointment tomorrow - posted on 29th - so why did I have a conversation yesterday (30th) with a lady who said it hadn't been posted yet? Deja vu? or something scarier..............................................................

fiona39
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Scottish

Mine did not show up properly on mammogram either but despite this they repeated it and ultrasound after 3 chemos. It is responding 'quite well' so they left me on AC. They plan to scan again after 6th (which aint too long away) - and then see surgeon and decide on best surgery. Obviously I did the chemo first hoping for wle but will discuss would it be better just to get mastectomy anyway - appararently the surgeon I am under will spare the breast if he can be I will not take any chances - if mastectomy it is then mast it will be. I have never had an MRI!!

Take care of yourself
Fiona
x

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Good luck on Thursday, Maddy!

Fiona, have they been checking on your tumor to see if it is shrinking? Mine doesn't show on the mammography and wasn't good enough on the ultrasound for a diagnosis. I might have to go back for more MRIs as we progress. It it isn't shrinking, they'll put me on Taxotere halfway through. They said getting on the MRI list is very difficult, it is needed too much.

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Now - that's interesting!

Just had a phone call from the Leicester Royal Infirmary Oncology Dept - I've got a planning meeting on Thursday 1st November ! Isn't that just a little too convenient after my phone conversation yesterday?

Ah well - at least it's a move in the right direction

Maddy xxx

quisie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi there Sottish

Good luck with the chemo - and enjoy Joseph!
For me, the beauty of chemo first is knowing for sure if it has attacked the cancer. I will have a mastectomy either way though.
I really am so pleased that things are settling down for you - you seem to have been balancing on a knife edge!

fiona39
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hey Scottish

Sounds like you are on the same treatment plan as I am.

I too chose chemo before surgery and once I had started treatment my bc nurse said she would have done exactly the same as me - quite reassuring.

Obviously I am ahead of you, having had 5 out of 6 chemos - it wont be long till you catch up - believe me.

Hope your first treatment goes well - its the thinking about the first one thats the worse.

Take care and if theres anything I can do let me know
Fiona
xx

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Good Luck with your treatment - it sounds the right thing to do, having chemo to shrink the tumour before surgery, that way you may well keep your breast if not your hair - think how exciting it could be choosing your new image - all those people you can pretend to be.

I'm still waiting for the pathology results on the areas removed by my surgeon, so still don't know if its hormone receptive or not, and the appointment for radiotherapy appears to have been 'lost' somewhere in the system - I rang his secretary yesterday and she's supposed to be 'onto it'! Meanwhile I'll just keep taking the tablets (and praying!)

Lots of love
Maddy xxxx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Here is an update of what happened today. I'm afraid I'm being very lazy and copying it from elsewhere!

Today they totally surprised me. I thought we were in to discuss surgery options. Instead they said if we operate now, it will be a masectomy. It would probably be followed up with chemo.

They suggested instead starting with chemo. This will hopefully shrink the tumor so I could have a lumpectomy in March/April. Since chemo was in the cards anyhow, and even if it doesn't shrink the tumor, it will at least keep it in check, we've decided to do chemo first.

I had a blood test and chest x-ray today. Tomorrow I have a chest scan, it is called something like a muga. If everything is OK, I start my first chemo session on Thursday! I'll have six treatments about three weeks in between each, as long as my body copes well with it. Chemo is done in Aberdeen only on the NHS. So that is me finished with private until the surgery. Oh, they say I will lose my hair. They've given me information on getting a wig.

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Thank you very much Maddy. I feel a bit better. I should try harder not to second guess them. 🙂

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hey - the area they took from me (5.5cms) was directly under the nipple and I've still got mine - don't give up -they may not need to take it.

But ....after my second op (to take a larger margin) there is a puckered dent above the nipple, not very attractive at the moment - thankfully the consultant isn't happy with the way it looks and says it can be 'tweaked' at a later date.

Any consultant worth their salt will want the best possible outcome (ie absence of cancer) with the best possible aesthetic look.

Good Luck
Love
Maddy xxxx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

I got called this afternoon and asked to come in to ARI on Monday morning to discuss treatment options. Hubby will come with me. I need to get someone to collect daughter from nursery, but that shouldn't be a problem. I'll phone one or two friends tomorrow. Tried my first choice earlier, but she wasn't home just then.

I know the lump is quite close to my nipple, so I'm reckoning that even with a lumpectomy I'll lose that. But you never know, I could be wrong. 😉 I'm not the expert.

Did they do some sort of reconstruction for you after the lumpectomy? Pretty much everything I've seen about reconstruction is following a masectomy. But it would be really weird if you lost, say a quarter, a third or half of your breast It isn't like you can get bras with different cup sizes, either.

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

What a roller coaster ride you've been having!!!! It's obvious that you need to know exactly when the op is taking place - and what is happening to you.
I will admit that no-one knew exactly whether I would need a mastectomy before the op - the consultant did say afterwards that due to a wrong measurement (these things do happen he said!) I ought to have been having a mastectomy as the area was much larger than expected - I am grateful that it didn't happen but have now got to the stage where I wouldn't mind - so long as it gets rid of the cancer and saves my life - the pathologist is being 'reticent' about the outcome for the second op so I suppose I have to wait for my meeting with the oncologist for the news from that.
Now all I have to do is keep taking the tablets and wait for the appointment to come through.
Ain't life great?!*
Hope you and the other Scottish ladies can get together to support each other with tea and sympathy
Best wishes to you all
Maddy xxxx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

I spoke with the breast care nurse again this afternoon. She is certain the consultant told her the surgery is on Friday, Nov. 2. I am also certain the one who was filling in for her when she was on holiday told me Thurs., Nov. 1. We even spoke the next day about several questions, but also because we have tickets for the whole family to see a matinee performance of Joseph and His Amazing Technicolor Dreamcoat on Nov. 3. I had asked what the possibility was of me still going if I had a lumpectomy and she had thought it entirely likely. Anyhow, this nurse is certain it is to be the 2nd. That means I won't be going to the show, but I want hubby to take the kids anyhow. But that is neither here nor there. The consultant wants to see me on Wed., Oct. 31 (which blows Halloween all to hell) at 6:10PM (basically, neither here nor there, too). I said I really needed to know before then what the scope of the operation should be. She asked me what he had told me before, and I told her he had said the whole range from lumpectomy to double masectomy. So she paged around in the MRI report and said that the right one is clear, he's only planning on operating on the left. But she couldn't tell me the extent of that surgery. That was all she could/would tell me.

It is all very frustrating, but at least I know if all goes well I won't be in for ten days.

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hello Curlycat/Carole.

So sorry you have this too.

I haven't been to the breast clinic at ARI. I was seen by Prof. Heys at his private breast clinic at Albyn. I must say, procedures do seem to happen quicker if you go private, but it seems that a lot of the tests must go back to ARI to be processed. Then they send it back to Albyn, even though Prof. Heys does most of his work for the NHS at ARI. It is getting very, very frustrating. Too much waiting in my mind. It took 19 days for me to get my core biopsy results when they told me it is usually seven to ten days. Granted, there was a local holiday in there, but nearly three weeks is much more than ten days.

I'll have my surgery at Albyn. It looks much cleaner, newer, fresher and Sheila says the food is better. 😄 If I need chemo or rads, it will be at ARI as Albyn doesn't have the facilities.

I'm sorry your guy is away just now, and you are faced with a real delimna. I'm certainly glad hubby doesn't go offshore anymore. I'd hate to have that on top of it all.

joannafinch
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

How frustrating for you ScottishHoosier. I was told that in most cases it doesn't matter if you delay surgery a bit - that although psychologically you want it gone, often it doesn't make any difference if you delay by weeks (or actually up to three months - not that i would ahve wanted that)....perhaps a bit of a delay will be an option for you. anyway hope you get a meeting soon and are able to sort things out.
Jo
xx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Arrrrrg!!!! Probably won't see the consultant until Mon/Tues.

My surgery is on Thursday, but I have no idea how big it is going to be, nor how long I'll need to be in the hospital.

I had an MRI on Thursday last week, but the consultant radiologist (yes, just one of those in Aberdeen for the MRI) was on holiday until yesterday, and is away again today. They had got her to promise to analyze mine and write the report yesterday. I envisioned some time this week after my consultant had seen it, digested it, spoke it over with his team (as he said he does), I would be asked back. They'd talk me through the results and what they want to do. I'd take hubby along. We'd talk about it and make our decisions. Some time next week would be a pre-op assessment and surgery on Thursday. I'd have time to stock up on food and cat things if I need to be in for a stretch, buy post-op things I might need (do I need a masectomy bra, for example), arrange help with the kids. As it is now, I'm in limbo. I might be in the hospital 24 hours, or on up to ten days.

This morning I phoned the breast care nurse (Sheila) and left a message on her machine. I got a call back on my mobile about 3:30. My neighbor and I took our kids to a nearby park (Hazlehead), then went around the other side of the park to check out the horse stables. We were in the middle of the stables, watching a horse get new shoes, when she called, so I couldn't be as persistent nor blunt as I would have liked. She said the report is done (good), but it is being sent to the consultant at the private hospital (Albyn), so he wouldn't see it straight away. ??!? She said she's over there this afternoon, so she can't get a copy of it until she is back at the NHS hospital (ARI) tomorrow. ??!?!?? She then said, well, surgery isn't until Friday is it? Nope, it is Thursday. When will I see the consultant? Probably not until Monday or Tuesday. I protested that I have no idea the extent of the surgery on Thursday, and kinda need to know before Monday or Tuesday. I will certainly have some options to mull over, unless it really is just a lumpectomy. If they offer a masectomy, should I consider having a double so it can't come back? Should I have immediate recon? What kind? She decided she could offer to get her hands on a copy tomorrow, have a look at it, and talk to me on the phone about it. Which makes me wonder why my insurance is paying for a consultant, if the nurse can do this.

They know I have no family to fall back on here. It is just me and hubby. Sil has said she could come up from York, but she does have a job. I have two young kids I can't just shove in a cupboard until I'm feeling better. Friends are willing to help, but that has to be organized, too. And it makes a big difference if I can be home on the weekend or have to stay in for another week. And whether or not I can drive the car.

curlycat60
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Fiona

Thanks for getting back to me. No idea about treatment plan yet they will tell me on 5th Nov all I know is it is BC and I will definitely have a masectomy (left) and that it is pretty likely that it is active but I don't know what that means so I am keep thinking it must be pretty bad. Spoke to Sheila this morning my BC Nurse to fill in the gaps that I didn;t take in yesterday.

BUPA I have no idea what the plan is - it is thru his work and no I have not told him yet as I don't think it is fair to tell him when he is so far away but I feel like I am lying to him as when he phoned last night I was worried that he would figure something was up. He gets back next Monday. I am 47 Fiona with one son of 21 and 2 daughters of 15 and 13.

Roller Coasters Ha!! never have liked them much,

Take good care, luvnhugs Carolexxx

fiona39
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Carole
Sorry you have had to join us on here but you will get loads of support, hints and tips.

I am treated in ARI. (I have written further up this thread about my dx and treatment etf). Under hospital guidelines once diagnosed with bc treatment has to start within a certain lenght of time so waiting lists dont really come into it - or not to a big degree. It is my understanding that your mastectomy could be done at Albyn (I think), but chemo has to be at ARI.

Do you know exactly what your treatment plan is - dont spose you will actually till core biopsy results back. Have you told your bloke or are you waiting for him to come back? Holw old are you?

This waiting is the worst time - once you know what the exact plan is you should manage to get your head round it more. Just be prepared for a roller coaster ride with many many ups and down. My initial thoughts when dx in July was ' I cant do this', but of course we do have to and we get through it somehow.

Sending cyber hugs
Fiona
xx

curlycat60
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Scottish

I live not far from you I guess I am in Blackburn, Aberdeen I wish you all the best on 1st Nov, I get my cone biopsy results on the 5th Nov just dx yesterday and been told that mammo, needle and ultrasound all show BC and I will go in about 4 weeks after 5th Nov for masecotomy. My bloke is away on business till early next week so I am finding the site very helpful in letting my tears finally fall last night and today. How does it work at ARI, thats where I went to the Breast Clinic but I know we have BUPA so is there a waiting list at ARI do you know. All I know right now is that tho I dread losing my breast I even more just want to get this monster out of me as soon as possible.

luvnhugs Carolexxx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi Maddy,

Yes, Albyn School and Albyn Hospital are just down the road from each other.

Good luck with the Tamoxifen. Hope it isn't too bad!

MaddyW
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi
Just found this link to you - sorry to hear about your problems with support - hope this resolves itself soon.

Albyn sounds familiar - is Albyn school anywhere near? - My brother in law is Deputy Head there - small world this cancer stuff isn't it?!*

I took my first Tamoxifen tablet last night and am sitting here waiting for the reaction to begin!!!!!

Best wishes
Love Maddy xxxxx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hiya, Fiona.

My main BCN is Sheila, but she was on holiday when I got my diagnosis. Val was there for me then. I think I was just in a low this morning. I feel much better now, and will wait two or three more days in the hope I get asked in. The radiologist should be looking at my MRI tomorrow. Just waiting, waiting, waiting to hear what Prof Heys has to say. Most of my treatment is at Albyn as we're using our private insurance.

Hello, llynnt.
The MRI technician was great, but she made me a bit nervous about putting that needle-thingy (can't think of the proper name) in my arm. She wasn't overly confident when she did it. My mammography, ultrasound, needle aspiration and biopsy were all at Albyn. If I need radiation or chemo, that will be at ARI.

The waiting is getting to me. I'm worried about organizing care for the kids while I'm in the hospital, getting them to and from school/nursery. Hubby can take time off work, but he's a consultant. No work means no pay. That is the trade-off when you decide to become a consultant instead of an employee.

My parents can't just come and help as they are in the US. Mom still works and has taken time off because my sister just had a baby (three weeks tomorrow). My in-laws can't help much because one of them has surgery on the 9th. My sil has offered to come up from York, but I'm sure she's limited in how long she can come for as she works.

It will all be clearer by the end of the week - I hope!

Thank you very much, ladies!

llynnt
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi ScottishHoosier

I too attended ARI but only for my scans & Mammos, my treatment was local at Elgin. My BCN over this way was brilliant and always helped when I had queries. If you have access to your BCN call her and speak to her.

Good luck.

Lynn
x

fiona39
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hey Scottish

I get treated the same place as you - I would not hesitate in contacting the bc nurses - they are fab - dont know who you have? I suspect that even if its got bigger it would not change anything. I too thought mine had grown but it was just in my imagination.
Just so you know - I am 39. have invasive ductal cancer grade 3 aggressive and I chose to go down the route of chemo, then surgery, then radiotherapy. I am at the stage I have my 5th out of 6 chemos tomorrow - o joy. Its certainly not pleasant but dooable as they say.

Good luck to you
Stay in touch let me know how you get on
Fiona
xx

ScottishHoosie
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Thanks Cecelia. I phoned the helpline here. The woman I spoke to was great. I think I'll wait another couple of days and see if I get the phone call to come discuss the results.

CeceliaL
Member

Re: Think my lump is getting bigger, waiting for treatment plan.

Hi there

If I was you I would phone your Breast Care Nurse, just to chat about it.

It's horrible worrying.

Cecelia. x

ScottishHoosie
Member

Think my lump is getting bigger, waiting for treatment plan.

Just under two weeks ago I was diagnosed with invasive lobular breast cancer. I found a lump the end of August, dithered for more than a week, hoping it had something to do with my period. Saw my consultant the first time 19 Sept. Had a biopsy on 21 Sept and had to wait nearly three weeks for the results.

I needed an MRI to see if there are any other changes going on in either breast, and had that on Thursday. The one and only radiologist in Aberdeen qualified to read it is on holiday until tomorrow. She's promised to do what is necessary then as the next day she is away again. Because of this delay, my consultant went ahead and booked my surgery for 1 November.

So, now I think my lump has got bigger. Do I phone someone? Who? The breast care nurse? Or do I just wait? If it has got bigger, it will show on the MRI, and my consultant just might see it tomorrow. And it is only ten days until my surgery.