Just had my diagnosis

Hello! I was diagnosed with breast cancer this Monday (16/11/09) and am still in shock. I’m keeping busy as I have a active toddler as well as two teens. My friends have been brilliant but I wanted to connect with women who have been/are going through this horrible situation. Has anyone else considered having a thermal imaging scan to give an apparantly more accurate image of the breast? I am booked in for a masectomy and possible lymphectomy in a couple of weeks but am going to ask if my consultant will move it back a week so I’m in my second half of my menstrual cycle - it gives you more chance of success according to research. Has anyone else tried to do this?

All the best

Hi,

Just thought I’d say hello. Had a mastectomy myself a few weeks ago. Not heard anything about timing it with your cycle, the way I see it is if they’re taking the boob, it’ll be just as successful whenever and the sooner they do it the better. I guess it depends on what you mean by successful though. Have you discussed a recon? I’ve gone with a temp saline one until I’ve had chemo and radiotherapy then after that I will have one made out of my back muscle. Thermal imaging sounds interesting but the little research I have done suggests it’s not that good. Were your mammogram results not too clear?
Em x

Hello Em
Thank you for your prompt reply!

I think my mammogram and needle test results were fairly clear but like you I’ve done some research and one of the cancer websites I found mentions thermal imaging as being something to consider. It says that women around my age (I’m 44) have denser breast tissue which makes it harder to gain clear results from mammograms sometimes.

As to the timing of the operation, studies done at Guys Hospital show that operations have a better rate of cancer eradication if done when progesterone is high rather than oestragen, that is in the second half of the menstrual cycle.

Yes I’m going to opt for a reconstruction after any chemo or radiation therapy is done with.
XX

Hello again!

Well, I’ve spoekn to my nurse and I have a grade 2 tumour as well as DCIS. I was told that both are extensive enough that a lumpectomy is not an option. Getting rather freaked out by it all now and trying to hold it all together in order to cope with my little girl as well as my teen is so hard.

Apprantly my mammogram was very clear so I’d derive no benefit from having a thermal image. Likewise my nurse said they trialed adjusting the operation times to fit the menstrual cycle but there was no apparant benefit.

So it looks like I’m going to have to have the MX on the 7th very likely followed by chemo and/or radiation therapy.

XX

Sabraan

Sorry to hear your news. At least you are now more informed and know what you have in store. I haven’t had mx but am currently on chemo, which is do-able. Mine was a grade three, so more agressive than yours. Positive mental attitude is the key, but no-one can teach you that. I found that having the treatment plan really helps you focus.

Take care

Julia xx

Hi,

I had 2 ops- a lumpectomy and then margin clearance before my mx and to be fair I’ve been in no more pain with this than the last 2 ops, the only thing holding me back is where I’m not allowed to lift anything more than a cup of tea whilst my implant is settling in and also as they haven’t been able to fill it up yet. Plus having 3 general anaestetics within 2 months has made me a little sleepy. All doable though. Are they doing a sentinal node biopsy or anthing? That’s what hurt the most for me but again, all doable and take whatever drugs they offer you. Mine was grade 3 invasive ductal carcinoma 25mm then they found more little lumps and some DCIS, plus one node was positive so they went back in and took the lot out.

Thankfully I only have myself to look after as we haven’t had kids yet (I’m 29 and we got married just after my diagnosis and before first op!) but all I can say is take whatever help you can get. You will need to rest big style after the op, the more you rest, the quicker you will heal and be back to normal and the quicker this will all be over.

Keep us posted on your progress and see what you can get from your hospital. The nurses at my hospital (Gloucester) are fab and really know their stuff. My consultant is fab too. Then at the hospital where I live, where I will have chemo (Cheltenham) there’s a support unit where I can have reflexology and relaxation sessions and get loads of advice. Plus get yourself booked into a look good feel good sesh, you get loads of freebies and faffed over for an afternoon. A really good book I recommend is ‘Cancer Vixen’. It’s a comic style book and written by someone going through this.

Hope you’re doing OK

Em x

Hi Emm, I hadn’t seen your postings on the forums for a while and wondered what had become of you. I think you had your original WLE/ SNB around the same time as me back in Aug/Sept. I am so sorry to see that you have now had to undergo further surgery on your lymph nodes and a mx. You certainly have been through the mill. My thoughts and best wishes are with you for your chemo and reconstruction. I am nearing the end of my rads and doing well.

vitual hugs Chris (laurasue) x

Hello Julia and Em - Thank you for posting replies. No I haven’t had a sentinal node biopsy - had to look that one up! I’ve just had the neddle test, mammogram and scan at Frenchay near Bristol. The staff I met at the breast clinc were very nice and I’ve been offered 3 free reflexology sessions which I’m booking in asap! I don’t know how big my tumour is but a lumpectomy wasn’t even considered so maybe it’s quite big. The consultant said he’s going to remove some of my lymph glands as part of the MX and see if they’re affected too.

I couldn’t take in all the information on Monday as I was in total shock and was on my own so no one was there to remember it for me. I’ve booked anothe visit with my consultant before my op, which is in a couple of weeks, just so he can tell me it all again and I can ask lots of questions.

Lucinda XX

Hi Lucinda,
Just read your posts, I was diagnosed on 13th Nov (yes a Friday…) with ductal bc and am also due a nastectomy on 7th Dec and axillary clearance. Am still trying to get my head round it, working up till then and probably doing too much but thats me…Good luck with your op, wil be thinking of you…
Tessa xx

Hi Tessa

It’ll be nice to think another woman’s going throught the same op on the day that I am! I’m not in paid work - at home with my hectic toddler so don’t have much time for brooding. I do have alot of fears though and am dreading only having one breast though I keep telling myself it’s worth it to be cancer free - hopefully!

This site has been very useful and has lots of useful tips - like what to take into hospital. But mainly it’s very encouraging to know other people have been there and understand.

Good luck with your op too and will be thinking of you too!
Lucinda XX

I had a large Grade 2 tumour (3cm) with a large area of DCIS two years ago and was advised against a lumpectomy. However, I had a fairly new type of mastectomy that meant that I had an immediate reconstruction using an implant but not any back muscles. The terminology is ‘skin-sparing’ and mine was ‘nipple-sparing’ as well (even though the tumour was very close to the nipple).

I think it’s generally not thought suitable for people who are likely to need radiotherapy as well (the implant can harden, although my BCN said it wasn’t a particular problem, they just change the implant) but it might be worth asking your BCN to see if any of the surgeons at your hospital do that particular operation - surgeons can vary enormously in approach, although, as you say, the important thing is to have the operation.

Good luck - I found the pre-operation period by far the worst. Do PM me if you’d like to ask me anything…

Hello Poddle

Found out today my tumour is 19mm from the scan and it’s oestrogen receptive as the majority are.

I hadn’t heard about that kind of reconsruction, I’m seeing my consultant next week to ask him all the questions I was in too much shock to ask him when I had my diagnosis, so will definitely ask him about it.

My BCN didn’t mention it as an option so I doubt I’ll be able to have it. I was very interested to read about having a ‘nipple’ tattooed onto your reconstructed breast - I’m definitely asking for that whenever I have my new boob created!

Anyway, thank you for your reply and those of everyone else who has replied to my initial post. And yes, waiting for my op is very hard.

XX

Looking back at your original post about advice, from my vantage point two years on, I’d also say it’s really worth making sure you have a consultant/surgeon that you like and respect because you’ll be seeing them for at least five years! I now only see mine every six months but it was a lot more at the beginning.

Good signs include surgeons who show you photographs of their previous operations and take plenty of time to answer your questions/concerns. They shouldn’t mind if you ask for a second opinion (a car/house purchase analogy was given to me by one medic with regard to second opinions). If he (or she!) thinks you’ll need to see an oncologist, ask them which they recommend. (The best bit of advice the surgeon gave me was to avoid being fobbed off with a registrar. Even though I’m at the non-serious end of breast cancer, I always see the consultant - again, six monthly.)

BCNs are in a tricky position. They can’t steer your decisions but they can pursue your requests. (My story for example: the surgeon who suggested my skin-sparing option had to take a week off for personal reasons during which another surgeon from a linked hospital swooped in and decided to take over my case. His only option for me was a mastectomy with reconstruction a year later. After a sleepless night (one of many at the time…), I went into see the BCN and said “I would not be happy to be operated on by xxxx”. She then grinned broadly and said: “NOW I can do something about it,” and I was returned to my original surgeon.

Having never been ill before, it was an example of how convoluted medicine can be. I think you can legitimately ask her if there are surgeons at your hospital or a nearby one who offer immediate reconstruction and she would tell you if there are good reasons why you shouldn’t have one.

Oestrogen receptive is generally a good thing (I am) - it means that you can add hormone treatment to your options. But it still doesn’t make the waiting easier.

Hi Sabraan,

Sorry about your diagnosis but wishing you all the best in your treatment. Try to keep positive, if you can. I really believe it helps.

Just wanted to add my thoughts from my own experiences:

Ask loads of questions of your consultant and breast care nurses - I always have a notebook with me so I don’t forget anything! I also printed out relevant queries/info/etc from this site to take with me!

I also agree with poddle’s advice about feeling comfortable with your medical people. My BCN had no problem at all if I had wanted a second opinion. Don’t feel rushed into anything. I was lucky in that I felt very positive about my mastectomy/recon surgeon from the start, and that he is based at my local hospital.(Just wish I had had him for my previous op…)

My BCN showed me photos of recons that the surgeon had done, which was helpful. (I also saw a book called ‘The Boudicca Within’ - a compilation of photos of women with recons; the BCN team had a copy).

Immediate recons aren’t suitable for everyone, I think it depends on your treatment and how the recon is done. There are different techniques, implant types (if required) etc. Sometimes it is advised to have a recon later on.

I had a mastectomy and immediate reconstruction (LD flap - ie using back muscle, and implant) 4 weeks ago and doing fine. Previously had lumpectomy (and lymph nodes removed) but did not get clear margins so needed mastectomy. I had 2 grade 3 tumours, 16mm and 7mm, plus a fair amount of DCIS. Also eostrogen positive (good news as it gives another treatment option). I am having tamoxifen (the hormone treatment) and have been asked if I also want chemo (apparently not that much benefit to me so has not been recommended one way or the other).

I wasn’t offered the nipple-sparing recon, I think this must be new/not so widely available. My tumours were also close to the nipple. I had skin-sparing type, and had to have a small (-ish!) implant as well as I did not have enough flesh to make the recon on its own. My surgeon said I should be thinking about nipple reconstruction in a few months, with the tatooing to get the colour. (The man is a perfectionist and wants to see the job done properly!)

I have also read about the timimg re the menstrual cycle; I don’t know if anything has been proven and, personally, I wouldn’t worry about it.

I also took advantage of contacting the peer support service here. I had a lovely lady call me to share her experience with me and we chatted for ages on the phone - I found it really helpful, and am very grateful to her.

Hey, I have rambled on, sorry, but there are lots of people here who can share their thoughts and experiences and offer advice.

My best wishes, with love :slight_smile:

And here I ramble on (sorry…). I’d say that one question you should definitely ask the surgeon is how many immediate reconstructions he does a year. As gardengirl says, if he regularly does DIEPs or another variety, he might have good reasons for not wanting to offer that to you. However, if he says he doesn’t ever do immediate reconstruction, that would be a clear indication (to me at least) that a second opinion might be a good idea.

Before my operation, I asked lots of people’s advice and found it really useful although it didn’t occur to me until afterwards that my GP might have been a really good person to consult (doh!) - a good one should be clued into all the various treatments available locally.

ps. I recovered really fast from my mastectomy - I was amazed. Also, the first thing my BCN told me was that breast cancer is basically the most survivable cancer. I now have a 90 per cent chance of surviving the next 10 years (That statistic is based on treatment available ten years ago and treatment has made huge strides in the last few years).

Hello ladies and thank you for your advice - it is very gratefully received. I’ve been told by my BCN and consultant that immediate recon is not possible because I may have to have radiotherapy and/or chemo after my op and a recon would interfer with that. Is that not the case then?!

Bit confused now but gonna call my BCN tomorrow anyway so will ask her.

I’m leaning more towards a recon using fat from my stomach which I gather gives you a more life like breast as it gains and loses weight the same as the rest of your body and moves in a more life like way which implants don’t - especially when you lie on your back! Is that also not so?

This is a very hard situation to be in sin’t it? I’m still pretty wobbly emotionally, trying to learn as much as I can about this to make informed choices and am booked into the hospital for my surgery in less than two weeks!!

Obviously I don’t want to be rushed into a decision but at the same time I do have feeling that I just want the surgery done with so I know the cancer is (hopefully!) out of me. Does that make sense?!

XX

It makes total sense. I remember telling my sister shortly after my diagnosis that if I’d had a sharp enough knife I would cut out the tumour myself. Slightly overdramatic (!) but I really meant it at the time. I hated the feeling that my body was nurturing something that was wanting to harm me. However, the surgeon that operated on me said that he felt he could delay operating on me for up to six months and still have the same result. I also had visions that the breast cancer cells were trying to trampoline into my lymph nodes. With an almost entirely straight face my BCN reassured me that cancer cells don’t trampoline but usually replicate very slowly.

Confusion is a very natural state, I’m afraid. No two cases of breast cancer are ever quite the same, it is true, but you can definitely have chemotherapy if you have immediate reconstruction for I was almost certainly going to have it, until the sentinel node biopsy came back clear and the tumour tested as oestrogen receptive and hormone therapy was seen as enough treatment.

Radiotherapy can present more problems with regard to immediate reconstruction but in my case one of the reasons I had a mastectomy was because I’m very fair-skinned and the Multi-Disciplinary Team (surgeon, oncologist, radiologist and nurse who all sit round and discuss your case to decide on the best treatment) felt that I might burn badly and a mastectomy would give clear enough margins around the tumour to ensure that I wouldn’t need radiotherapy. It might be an idea to call the helpline here because they would much more about radiotherapy etc.

Sometimes there are very valid reasons to not to have immediate reconstruction (such as the position of the tumour) but it’s also true that some surgeons don’t do immediate reconstruction just because they have never learned how or don’t like doing it.

My implant looks and moves around in a pretty similar way to my real one, although the real one droops a bit and I’m going to have it lifted at some point next year so they match.

Thank you everyone for your replies - this forum is helping me so much!

Been having a very down weekend - not helped by being on my own most of the time with a fretful toddler full of cold!

Really confused about my surgery now and whether I can have an immediate reconstruction after all your helpful advice - having been told definitely not by my BCN as it interfers with any subsequent therapies. Going to try and call my BCN again tomorrow to ask her some more questions. I’m also seeing my consultant on Tuesday to ask him lots of questions.

Just feel like I’m on a conveyor belt heading towards my operation date which seems to be getting faster and am so scared!!

Oh, you poor thing - my heart goes out to you. I was a total mess after my diagnosis but it does get better. And actually, you do sound really clued up about research such as timings of operations - much more than I was before my operation.

Let us know how you get on. Would it help to chat to your GP?

Hi,

Personally I’ve not heard of recons interferring with other treatments. However it has been explained to me that as I’m having chemo and radiotherapy, there is no point doing the proper recon as all the treatment can mangle things a bit. The reason being, when you have an implant in, your body encapsulates it and the radiotherapy can make this go quite hard so will probably need replacing. My surgeon sees it that there is no point making your nice new boob to then zap it. She prefers to do a temp one then about 6m to a year afterwards do a proper one.

I’ve had my first fill in my temp implant now and granted there’s still a way to go but we’re getting there.

Hope you’re doing ok. If you’re ever unsure do ask your BCN. It does seem that all hospitals work so differently.

Take Care
Em x