One month in and choices to make

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Hi all
New to this, and after a month am just getting my head around it. Went for 3 yearly screening late Nov. and recalled 2 Dec, when ultrasound doc told me she was ‘almost sure’ I had BC even before biopsy. I still can’t feel anything, but the following week it was confirmed, lobular on left about 5 inches under armpit, 1.5 cm was mentioned. GP later told me it was very est. responsive. Radiographer then said since result she had closer look at mammograms and said she thought there may be another spot on right 12 o’clock, and proceeded to biopsy this - very small so took 9 goes. Then she recommended MRI which showed another tiny spot on right again, but since then they’ve been unable to see it clearly enough to biopsy. (I call them daisies, in a poor attempt at humour) Both she and BCN said if it was them they’d go for double mastectomy with reconstruction, and I’ve appointment for sentinel node biopsy last week in Jan with big first week in Feb with surgeon and plastic surgeon together. Was advised there’s always a delay trying to get two together.

I know so little about this. I have a multitude of female relatives and we just don’t get this (dementia was my genetic fate). I just wondered if anyone here has been in a similar situation, I feel that OK there are two - but one at 1.5 and other being tiny, and 3rd one may or may not be positive, and I’d have to travel far to pursue that one and probably delay any surgery. I’ve only started reading about it, as I was just to scared before. I’m just worried I’m being recommended something and accepting an awfully big operation, for two, maybe 3 small spots. I suppose it is the fact of there being more than one, and if that saves me fretting for the rest of my days then I guess that’s good. I have a close friend who’s been through mast. and recon. but her case is very different.

Also is there always such a delay - I almost went for immediate mast. which I could have had already, but was advised by radiographer and surgeon that a delay of 6-8 weeks would make no difference to size. I am concerned by the time they get round to it it will be more advanced.

Think I just need some response from any others in similar or not so similar situations. I’ve been advised I’ll be given a choice of what kind of reconstruction - I find it difficult to decide what to have for dinner.

So any thoughts from you would be very appreciated.

Thanks,
S

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Hi, I also have multifocal invasive lobular carcinoma. They don’t tend to form definite lumps, but grow in difficult to spot on mammogram patterns, hence often MRI is used to determine the extend. Lobular cancer has a known tendency compared to ductal to “jump” to the other side. I wasn’t offered a bilateral mx, I had mx and ld recon on the affected side, some surgeons do though, some don’t. It’s good you have time to get plenty of advice and information, you could ring the helpline here for further assistance! Good luck!

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Hi Sheil and welcome to the BCC forums

In addition to the valuable support you have here already, as Tina has kindly suggested, please feel free to call our helpline where you can talk things through with one of our team on 0808 800 6000, weekdays 9-5 and Sat 9-2.

Take care
Lucy

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Thanks Lucy and Tina
Tina, you say you weren’t ‘offered’ a bilateral? Did you have definite spots (sorry I’m not up on the terminology yet) on both sides? I’m just confused about my situation, I may be wrong but is 1.5 on one side with tiny on other enough to submit to such extensive surgery, or do I need to just go with what docs say as they’re the ones who know. Is it the fact that it is lobular that I am being recommended the bilateral mastectomy. Oh hell, such confusion. I don’t want to go against the advice if it is really good advice that I am being given.
S

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Hi Sheil

I am posting a link to the ‘Lobular breast cancer’ publication written by BCC which you may find useful:

breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/76/

Best wishes
Lucy

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At the moment it looks to me as if you don’t have enough to work with to enable you to make an informed decision that is right for you, so I think there are some questions you might want to ask, directly, so you have more information on which to base your decisions. You may well think of others.

What would happen with these small spots if you DON’T go for the option that has been suggested? And for yourself, would you be able to enjoy life without worrying and fretting if you decide not to have the treatment suggested?

Are they suggesting other treatments as well as the double mastectomy? Would you also need chemo, radio or hormone therapies or a combination of those?

What alternative treatment plans are there?

Would hormone therapy before any surgery reduce the need for a mastectomy, given that it’s ER+?

Would chemo reduce the need for a mastectomy?

Would you need chemo, radio or homone therapy even after a double mastectomy?

Are there any alternatives to mastectomy - could they do wide local excision? If so, would you need radiotherapy afterwards?

If you don’t do it now, what could be the situation if you left it for 12 months?

Have they been able to identify the grade of the tumours they’ve biopsied? How does the grade affect the advice that the consultant has given you?

If you do go for the double mastectomy, would the reconstruction be immediate or would you have to wait for it?

Could you ask for a second opinion?

I know I’ve just put more questions, but perhaps this sort of question - and others you can come up with yourself - might help you to come closer to a decision.

Take your time to make your decision and don’t feel pressured to do something you’re not comfortable with. An extra few days is unlikely to change the outcome and as this is a major decision you’re facing, try not to feel pressured into doing something without having the chance to come to terms with the implications of the decision you’re having to make.

Very best of luck to you, it’s a bitch of a decision to have to make.

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Thanks for your thoughts. I think what I’ve been given is a kind of ‘party line’ thing. I was told the docs involved would have a case conference and make recommendations. To be honest, I’ve been so shell-shocked since I found out, I couldn’t even think of questions or asking for alternatives. Just want to be fixed I guess. So thanks for some questions I can at least ask the BC nurse who I’ll see next week. I’m actually a researcher with the NHS, but on oral health. I’ve just started dipping my to into some research studies, but still scared I’ll come across something that will freak me out.

My gut feeling is I’ll go with the recommendations, but I really need to be better informed. I really felt at the time that the docs and nurse were trying to gently give me very bad news - well I suppose a recommendation for a double is pretty awful. I did say on leaving ‘please tell me something positive’, but only thing they said was - ‘well it was found on screening, so caught earlier than it would have been’. Nothing like ‘well they’re small and estrogen responsive’ which was what the GP told me later.

Sorry for rambling on, but if there’s anyone there with anything like I have, I’d love to hear how you made your choices.

One more strange question - for anyone who’s had a double mastectomy - I kind of feel I would rather be balanced, I just think I’d feel very lopsided, or is this odd?

Forgot to add, I’m 54, no kids, but just remarried two years ago, so I guess I would like to look OK if possible.

Any thoughts, advice, experiences would be great.

Thanks
S

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I had areas of concern in both breasts after routine screening. These were confirmed as 17mm IDC in left breast and 11mm lobular in the right. I prepared myself for a double mastectomy but was persuaded by the surgeon that because the lumps were small I should opt for wide local incision, sentinel node biopsy and radiotherapy to follow since the outcome was the same as mastectomy. I had the surgery on 14th November 2010.

Two weeks later at the follow up the surgeon said that a further two tumours 7mm and 5mm had been found on the left breast, that the lobular tumour on the right was 22mm as opposed to the original 11mm and that there were suspicious looking cells. I was told that my breasts were unstable and advised to have a double mastectomy. The good news was that my nodes were clear

It was all a bit of a shock but probably because I had originally psyched myself up to this surgery I wasn’t as upset as I might have been. I therefore had a double mastectomy without reconstruction on 14th December. I miss my boobs but I also feel a certain amount of relief that the cancers are (hopefully) gone. I also do not resent being talked into the lumpectomies because having experienced both I can see that they were trying to save me from much more extensive surgery.

I have gone with the recommendations of the experts all along the way. I felt that that was the best option for me.

Rose

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Hi Rose
Thanks so much for that. And you’ve also reminded me of something that was mentioned in a phone call to one of the consultants. He said I had ‘unstable’ breasts, but I’d forgotten that in amongst all the other scary stuff. I recall when he said that I thought - just go with the double. I did say dementia runs in our family and that was my worry, but not till I was 85. Maybe something I’ll look into tomorrow at work when I should be concentrating on real work!

I’m being optimistic I’ll also have clear nodes, surgeon did say he was ‘80% sure they were’, although I’m beginning to feel some sensation (not really pain, but something) under left arm so hopeful rather than certain.

Really never imagined I’d be here, but other than the downside of why we’re here, it looks like a bunch of really nice people.

S

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Hi Sheil
Just read your post- I was diagnosed on the 20th of September with BC- left breast only small tumour. I had booked and paid for a trip to Australia in November. When I saw the surgeon she advised me to go on the holiday and be admitted for surgery on return. I had the surgery on December 10th.(11 weeks between Dx and surgery) She put me on Tamoxifen in the meantime. So time wise I’m sure you are OK- not a one off!
All the best whatever you decide- Diana

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Hi Sheila just to say i was given the choice between mastectomy or lumpectomy and as you say i told my onc that i always choose the wrong que at the airport so how could i make this decision and it be the right one .Mine was a 2.6 cm invasive grade 3 lump in the duct and they told me to take a few weeks to think about it cos my immediate reaction was to take it all and have full mastectomy .i was 48 and still like to wear my bikinis and sundresses etc abroad and i asked my dr what he would do if i was his wife and he said because it was all confined to the lump and there was only 1 wle lumpectomy was equally as successful as mastectomy no one operation was better in prognosis than the other . It was when i was talking to a friend ( who had also had mastectomy) and she was telling me about how she had managed to get a couple of mastectomy costumes for holidays and how she always had to be careful of which tops etc she bought i thought RIGHT i’m going to go for lumpectomy and also had chemo and rads and god forbid if i have to go down mastectomy route i’ll deal with it as and if i have too .If it helps you just have to do what you feel comfortable with and if you gonna spend the rest of youre life worrying about it coming back ( you will do that regardless of what operation you choose ) My friend wasnt offered a lumpectomy because she had 2 or three areas and they said by the time they did lumpectomies there wouldnt have been enough breast tissue left she was better off having full mastectomy and recon . It also may help youre decision to know how aggressive and what grade it is but only you can decide. Hope this helped in some small way xx Julie
ps i also take comfort in the fact that after lumpectomy i can still have a yearly mammogramme to check if everything is looking ok.

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Thanks so much for your thoughts, Julie and Diana
I’m a bit concerned that although I think I’ve had all the tests before surgery, i.e. mammograms, biopsies, ultrasounds and MRI that no-one has mentioned what grade the blasted things are, although recommendations for double mx have been given.

Should this information be available to me at this stage?

Also, not sure if the delay between diagnosis and actual surgery (more than 2 months in total) is because of my non-urgent situation, or just that the capacity of the NHS here in Scotland is less than other areas.

Julie, I was also told the same as your friend, that if I had to have 2 lumpectomies on the same breast then it would be a bit of a lumpy mess (my words, not surgeons). But this is the side with one tiny spot at 12 oclock, and another undetermined spot identified on MRI but was too small to see on ultrasound or mammogram (the one I’d have to go to Aberdeen to have biopsied as they are the only health board in scotland with MRI/biospy equipment.

Just a bit worried that I’m maybe not being given all the options that some may be in other areas. If I really thought this was the case, then I would consider going private, as my sisters have offered to help. But again I’d be concerned, as a friend who works in this area with the NHS locally did say the NHS is really the best place to be in this circumstances.

So some answers, and even more questions. Confused or what!

Did most of you here know what ‘grade’ it was, and how aggressive it was before surgery - no-one’s mentioned these aspects to me, again a bit freaked that I’m not being given enough information.

Also Diana - I had thought that if I’ve to wait for surgery and 2 positive spots are est+ then could I not go on Tamoxifen in the meantime but again, this has not been mentioned or offered. Wonder why not?? Another question for nurse on Monday, but not sure if that would be her remit? I don’t think I will get to see an oncologist until after surgery. Is this how it usually works, or am I falling through the gaps.

Again, thanks so much for the help.
S

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Sheila i was told mine was grade 2 after my biopsy ( when i got results off the dr ) but it was upgraded to a 3 after it was tested after surgery but it was explained to me that even if you had 100 grade 2 cells and 10 grade 3 cells it had to be graded at the highest type they find ( if you understand that ) the time factor is not an issue for it to spread before youre surgery it wont effect the outcome mine was strongly ER +ve they use a scale 1-8 and mine scored 8 so 100%. There is a multi-diciplinary team of surgeons ,oncologists Bc nurses etc that meet and they put all youre results into the computer ( adjuvant on-line) it goes on youre age, size and grade of tumour if its ER / PR receptive ,all sorts of factors and they come up with the best possible treatment for you according to NICE guidlines so its not just a postcode lottery so dont worry you are not getting best possible treatments ,but at youre next appointment you need to ask all these questions so that you are able to make an informed decision with all the facts in front of you dont make it before .PS i was also node negative ( got these results after surgery ) but still was offered chemo as my extra insurance policy ( another hard choice to make ) but im glad i had it now its all over because i know it was just fear of it that was swaying me .xx you can message me anytime for any advice or help xx julie
PS i didnt start tamoxifen untill Sept when i started radiotherapy

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Regarding grade, if you have had biopsies the results will probably include details of the grade, and if your BCN has access to your results then she should be able to tell you, though she might have to go off and look in different files or computer systems so might have to call you back. If she doesn’t know, I’m sure she can find out. Same for any of the questions you ask her, really. If she doesn’t know, she will know who she can ask.

You will probably also be able to ask her what type each of the areas is, as they aren’t the same. The leaflets on BCC about the different types of BC are very informative and explain what’s what about each type.

Another thing that affects possible treatments is HER2 receptive or not. If it is, then it’s suitable for Herceptin. If it’s not, then Herceptin wouldn’t do anything for it. In my hospital they only do that particular test after the lump has been taken out rather than on core biopsies.

You might also find it useful to call the BCC helpline during working hours, number at the top of the page. They might be able to help you get your thoughts in some kind of order ready to speak to your BCN or others.

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Thanks ladies. The herceptin question was one that I did ask about, I’d read something - but seems that’s not something that would do me any good. But at least I now have a big list of questions to ask, without sounding dim. Sounds like big surgery, tamoxifen, and who knows what else.
S

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Hi Sheila, like you I have not long been dx and am due surgery and treatment. I was just saying the other day that I couldn’t feel my lump at all under ultrasound suggested something suspicious and the biopsy was done. Now where the cancer is hurts. Not s sharp pain but throbbing. I also have a rather sore underarm on that side although I was also told that ultrasound suggested lymph was clear. I hope in both of our cases that it only hurts because of the tests already done. Like you I am scared that the soreness suggests lymph involvement but hoping that this is just my mind playing rotten tricks. Keep strong, love MaryGrace xx

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Several people have said that the lump hurt after they’d had a core biopsy (me included) so I suspect that’s a side-effect of the biopsy rather than any signal that things are going wrong.

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Hi again
Marygrace - I’m exactly the same. Keep trying to believe its all in my head. My biopsy was about 4/5 inches from the armpit, and biopsy was weeks ago. I’m hoping its just the hypochondriac in me! I was so much happier when I was one of the ‘worried well’.!!

I now have more details from the nurse. the two spots, one on each side, 1.2 and 1.3 mm, both invasive lobular, and both hormone responsive but herceptin negative. And still have this other area, seen on MRI around 1 cm, but can’t be seen on mammogram or ultrasound. Even with the bilateral areas, I still think I’d feel I’d be happier (maybe not the right word) to undergo the double if this 3rd spot was confirmed. I’ve read that there can be quite a few false positives on MRI, and wondered if I should pursue an MRI guided biospy. I’ve changed the title of this thread as I’d like to hear from anyone who has undergone this and where. I’m considering going private for this, buit have only been able to find a clinic in London, and I’m in Scotland.

Thanks again to all
Sheila

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Regarding things seen on MRI that turn out to be nothing to worry about, been there done that.

I had an MRI because the tumour we knew about couldn’t be seen on the mammo even though they knew where to look, because of the texture of my breast tissue. I was warned before the MRI that it is extremely detailed and does pick up stuff that is nothing to worry about, and that I might have to have further tests. This in fact turned out to be the case and I had to have an ultrasound and core biopsy on a different area which turned out to be just normal breast changes consistent with my age, and nothing to do with cancer.

I think whether to pursue an MRI guided biopsy might be guided by what you decided to do regarding the other two. If you’re heading towards a mastectomy anyway, would knowing what this other shadow was change your mind in any way? You might want to also ask, if you decide to go for mastectomy, whether they would be able to analyse the area that showed a problem afterwards so that you can have a bit more certainty. That might help to put your mind at ease.

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Take care xx