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

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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.

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Hi there

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

It’s horrible worrying.

Cecelia. x

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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.

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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

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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

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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!

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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

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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!

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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

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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

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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

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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.

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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

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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. :smiley: 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.

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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.

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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

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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. :wink: 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.

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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

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

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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.