need to decide quickly about surgery- advice welcome

Hi everyone,
I have a lobular tumour 1.2 cm x 9 mm, 1 lymph node “iffy” but doesn’t look malignant, no spread elsewhere (this is after mammogram, ultrasound, core biopsy and MRI - they have been very thorough as I am only 36 and have dense breast tissue apparently …) I need to decide whether to have WLE or mastectomy - decision needs to be made by 2 pm tomorrow, when I sign consent - surgery Monday 14th - what do others think?
Cosmetic considerations don’t come into it for me, I just want the best possible chance of seeing my little girl grow up - she is 9 - does anyone have statistics on survival rates after WLE/mastectomy? The consultat said they might have to do a 2nd operation when they have analysed the margins of the current tumour. Really confused as to what I should do. Please help if you have any experiences/opinions.

Hi Irina,
Sorry to hear that you have had to join us but welcome.
I had WLE on 23rd April after finding a lump. I was dx with invasive ductal carcinoma, grade 3 with 3 of the 10 nodes removed testing positive.
I had to have a re-excision as the margins were non-existant on one side of the lump. When I was told of the re-excision I discussed having a full mastectomy with my surgeon and he said that removal with good margins and radiotherapy is as beneficial as a full mastectomy. The op’s were fine and I recovered fairly quick, the worst of it is the node clearance because your arm needs to be rehabilitated as there will be restricted movement but I have full movement and as long as I do the exercises things keep that way.
I don’t know any statistics and have never asked about prognosis etc.
Mine is ductal and to be honest I don’t anything about lobular but I am sure there are some who do.
I am going for my second chemo session next week and so far everything has been OK, do-able is the word used on here a lot.

Sorry if I haven’t been much help, I would have a long discussion with your surgeon and he should help you make your decision. Write down all the questions you have so that you can ask him tomorrow.

Good luck
Hugs
Lisa
xoxo

Hi Irina
I’ve also posted this on another thread where you had asked for ‘advice’

I also had lobular cancer but didn’t have a choice due to the position of the lump under the nipple and being small breasted a WLE wouldn’t have left much. I did initially have a lumpectomy and it was that which confirmed the nature of the cancer and the need for the mastectomy.
Regarding a recurrance on the chest wall, yes there may be a possibility but where there is, then rads are offered to reduce the stats. In my case because there was a 1mm clearance between the tumor margin and the chest wall that statistically gave me a 5-10% chance of localised recurrance but rads took that down to 2-3%.
Survival rates are very individulised depending on the nature of the cancer, grade, lymph node involvement spread etc. It was only after the mastectomy and the removal of a sample of lymph nodes that I was given the stats regarding localised recurrance (quoted above) and general recurrance which were different.
Decision making is so difficult isn’t it?. its great to have choices but sometimes I’d rather it be decided for me!
All the best as you decide
M

Hi Irina

Others will know more than me but I would have thought that a masectomy would be “safer” as there is no breast left for anything to potentially be hanging about in.

If you are sure that you are more worried about survival than cosmetic then you just need to make sure that the surgeon understands that so he can advise you.

Good luck with your decision and everything else
lots of love and a big hug FB xx

Hi Irina,

If you have been given the choice go with your gut instinct. At the time of my surgery I wasn’t given a choice, my gut feeling said something else which later proved to be correct.

Good luck, or is that good gut

Take care
Carol

Statistically there is nothing in it - so it depends on what you want. If you have WLE and they find cancer cells too close to the edge of the lump they remove you might have to have a second op - they call it re-excision. They will try to avoid this by taking a biggish margin around the tumour which in your case is small.

They will also test your lymph nodes.

I’ve still got most of my breast. With radiotherapy your risk of recurrence in the breast is low, but if you do have a recurrence, the treatment offered would be a mastecomy.

I’ve not had any recurrences and I am now five years since my original surgery

I didn’t want to have a mastectomy under any circumstances and wanted the minimum taken away. However, it is still noticeable to me. I still have both nipples though. One faces more towards my armpit now as it has moved towards where the tumour was cut out from which was under my arm. I don’t think anyone else would pay it a lot of attention but I’d be lying if I said it didn’t bother me. I liked my breasts a lot more when they matched better although one was quite a lot bigger than the other pre-surgery. Ironically this is the one I had breast cancer in, yet they still don’t match

Mole

Hi Irina

What a choice to make!! Choices are not always a good thing!
I don’t really know much about lobular sorry. My team have said the same as Leeloo’s…WLE with good margins and rads is just as beneficial as mastcetomy.

I have been dx with IDC 3cm and was advised the best prognosis would be bilateral mastectomy and recon after treatment, bilateral because I have BRCA1 identified gene.
I am only a 36B and slim so I would need implants for recon. Can’t have recon done straight away because rads can distroy the implant. So their plan was to remove the affected breast, insert a tissue expander that will be filled over a period of time. During this time I am told I need to give up smoking, put weight on, chemo and rads. Afterwards, I return to have the expander and other breast removed and have the recon using implant and the tummy thing.

I wasn’t totally sold on this idea so after discussing this with plastics and my consultant I am now having WLE, with the loss of nipple. I am aware this may reduce the size but I am prepared for that and the no nipple! My consultant was happy with my decision.
My problem is the thought of waking up and having no breast, would perfer immediate recon, but no such option for me.

I feel I need to deal with this nightmare first and then (when given up smoking and a bit fatter) will consider the bilateral with immediate recon. I too want to be around for some years yet…and see my daughter blossom into a beautiful lady.

It is a very personnal choice, I agree with Leeloo…speak to your BCN or your consultant and ask just about anything you can think of.

Good luck with your decision

Big hugs
Catherine x

Hello Irina
I have been told that there is no difference in survival rates after having either a mastectomy or having WLE followed by radiotherapy.

Good luck.
Anthi x

Dear Irina

It’s late in the evening but I just wanted to say I am a lobular lady with large lymph node involvement. I had a WLE as my consultant said the survial rate would be exactly the same. I think it is more to do with where the lump is located, clear margins etc. Sometimes it’s just not possible to have a WLE.

Good luck for tomorrow.

Jeannie

Hi

I had WLE with clear margins and radiotherapy. I wasn’t offered mastectomy as lump quite small and was told that statistically survival rates the same. It is true that if you have a mastectomy, all breast tissue is removed so recurrence unlikely, but where do you draw the line? The cancer could come back in the other breast? I was discussing this yesterday with work colleagues. They said, if they were me they would have asked for a double mastectomy just to be sure I didnt get breast cancer again. I suppose they are right, but that is very drastic and unless I had a very aggressive type of cancer that was very likely to recurr, I am happy with what I chose.

I had WLE and node sampling - like Cathy I was not given a choice. The surgeon told me what op he would be doing and that was that, not in an arrogant way, and I suppose if I had wanted mastectomy or even double mastectomy I could have requested this … I was private so they were not going to turn down the request. I’m happy with what I had and the recovery was quicker than a mastectomy would have been. If I had a re-occurance tho I would request mastectomy.

Good luck with the decision making and good luck for the operation when it comes.

Hi
I too given the choice, chose WLE for 19mm Lobular lump. Had re-excision, margins not clear first time. Rads followed. I think it is really difficult to choose. I still wonder if I did the right thing. It is a tough call. Cosmetically for me it is good, like Mole the lump was at the side nearer the armpit. I also never had MRI so have the added insecurities that go with not knowing if there is something else lurking. It is a personal choice, not an easy one and I wish you all the very best with it. Alice

HI Irina,

I had lobular the same size as yours and my MRI came back showing only the tumour, so I had a WLE with SNB. The sentinel node biopsy came back clear but the histology from the WLE showed I had extensive LCIS (lobular carcinoma in situ) in the breast and was told I needed to have a mastectomy. I had this with immediate reconstruction and have had no further treatment (ie rads or chemo) and am now on tamoxifen for 5 years - only 4 years and 2 months to go!.

Good luck for your op.

Best wishes,

Sally xx

what did you decide Irina ? how did it go? let us know … we are thinking of you love FB xx

Sorry message too late for your decision - but I chose WLE and am pleased with resulting smaller slightly deformed boob. And am confident that WLE has given me the same survival chances as mastectomy.

Like others I had to have further WLE to clear the margins following the first op, as they discovered the tumour was lobular and thus bigger than expected - 2.7cm. I recovered much quicker from second op, mainly because it didn’t involve further surgery on armpit (from which previously I had 3 nodes removed all clear).

Hope the op goes well next week.

Shelagh