Newly diagnosed invasive lobular breast cancer

Hi Leanne. All of us on this site have different stories to tell and what happens to one of us, even though we may have a similar diagnosis, can be very different from someone else with a similar diagnosis. I know it can be difficult but it’s important to try and trust the medical professionals who are treating you. If you don’t understand why a decision has been taken I would urge you to talk to your breast care nurse or nurse specialist and if necessary ask to speak to the surgeon again so he or she can explain their decision. There is so much to take in when you are listening to what you are being told and it can be very difficult to take everything in. Although you have been told one thing (presumably based on the images available at the time), the MRI images will be reviewed and discussed at the multi disciplinary team meeting and if necessary the plan will be changed. My situation was complicated because I have severe asthma and my surgeon didn’t want to have to operate more than once. Although he gave me the option of WLE he told me the risks associated with the procedure and when I asked what he recommended he said mastectomy. I also talked it through with my GP who knows me well and she recommended mastectomy as well. I was left feeling that although it wasn’t what I wanted to do, it was the right choice. The predict tool allows your doctor (or you), to look at the potential benefits of various forms of treatment following surgery (whatever form of surgery you decide on). . The tool can be found here. https://breast.predict.nhs.uk/tool. You will need to wait until you have had any operation and results of pathology in order to complete the relevant fields. I had my surgery on a Tuesday and was discharged the following day. Everyone reacts differently to a general anaesthetic but I was knocked out from it for a few days. I started to feel like a human about 7 days after surgery but my lungs were not good during this time, so I might have recovered more quickly if they hadn’t been playing up. I didn’t have a great deal of pain following my mastectomy although it was certainly uncomfortable and as the nerves began to heal I did have sharp, shooting like pain, but these were intermittent and only lasted a matter of a few seconds. As far as affects from a mastectomy are concerned I think the main thing to find out about is whether you would want any form of reconstruction. I didn’t have any form of reconstruction because the surgeon wasn’t happy to do it (again because of my lungs). There are ladies here who can tell you what there experiences have been like following reconstruction (whether implant or using your own tissues). It is important to do any exercises you are given (to ensure your arm doesn’t lose mobility). Sorry it’s such a long post. Do ask any other questions. There is also a FB group for ladies with lobular carcinoma called Linking Lobular Ladies. I have found the site very useful (as I have found this Macmillan site useful too), but the difference is that all the ladies in the FB site have the same type of cancer as we do. Take care. Xx

Thank you Rosebee and Angua1 for sharing your stories. I’ve taken away so much information I didn’t know that will help me when I get pathology results after my op to determine my next treatment xx

If you have any other questions, please don’t hesitate to ask. We all have different stories to tell, but knowing that there are ladies who have travelled a similar path and have come through it all can be very comforting.  Xx

Hi Rosebee. Apologies for the delay in replying to your message, it’s just been so busy here with family things going on and Christmas etc but thanks so much for all the info and advice you have given me and the links to the fb site which I’ll definitely look at. I do realise everybodys stories and treatment will be different and I’m just trying to take what knowledge and information from others stories to help me get a clearer picture about this type of breast cancer.

I’m normally a very patient person but have a nursing background from many years ago and my last cancer experience I did not get on well with my oncologist who was at times rude and evasive so I lost all trust in I her so until I hear more from my own new team of doctors I find it hard to trust and I will know right away if they are hiding information from me. So, I am one of those people who needs information so that I can process in my own time and waiting for answers, plans and appointments at this stage is really hard. My last cancer experience there were so many delays from the very beginning and it turned out that an email my gynaecologist had red flagged to the booking office was not opened and acted on until I chased it up months later. That meant I was already far too late in being seen and I ended up with the cancer metastasising to several areas. There is so much more but far too long to post on here. 

I heard today that my MRI has resulted in me now having to go for an ultrasound of my other breast on 11th January so I’m  now thinking there is cancer in that breast too but although the report is done the lady I spoke to couldn’t tell,me what was on it as she’s not qualified to. I can’t help feeling very anxious again and worrying about the extra delay this will cause to getting the cancer removed. I wish they’d done an ultrasound of both breasts at the time of my diagnostic mammogram instead of just the suspect one. I think once I know what I’m dealing with I will actually cope much better. 
Hope you are continuing well on your recovery. Sorry for the long post xx

Hi Leanne. Please don’t apologise, you have so much going on and it’s a very difficult time for you. Just to pick up on a couple of things you have mentioned in your post and to tell you briefly what happened to me. After my original breast assessment appointment where I had mammograms and an ultrasound of my right breast I too was told that I would need an MRI on both breasts. This showed a larger area in the suspect right breast but also an ‘inderminate’ area in the left. Following the MRI I saw the surgeon and he wanted a further ultrasound (done by the same radiologist) on the left breast (the one they hadn’t done during the breast assessment appointment) but also a further ultrasound on the right breast. The surgeon also said that he might want an MRI guided biopsy of the area on my right breast (which couldn’t be done locally), but fortunately when I went back for the ultrasound, the radiologist was able to look at the MRI images and do the biopsy (it did take her and a colleague over 30 minutes to find the right location). Like you, it would have been so much better if they had done an ultrasound of both breast at the original appointment but that didn’t happen. Whether the ‘inderminate’ area would have been seen on ultrasound is another matter. Interestingly, I asked for a copy of the MDT notes and on that the radiologist notes that the area on the right breast, seen on MRI could not be seen on the original mammograms when she compared the images, so it shows how vital having the MRI is. As far as the trust issue is concerned I also have found it difficult in some ways to completely trust my surgeon. My situation is more complex because I have severe asthma, but I do t always feel that he has been completely up front with me. Like you, I like to know the full details,  it just want they feel they want to tell me, and I feel that at times he hasn’t really answered my questions fully, or he has brushed some of my concerns aside. Apologies for the long post. The need for further imaging (MRI and further ultrasound) does delay things, but with ILC they are trying to get the very best detail possibly to guide the decision about surgery. The waiting is so very difficult, but once you have a clearer picture of what is happening and what the plan is, it does become easier. Finally, I had to chase my MRI appointment, it should have been marked as urgent but when I called the appointment line, they said it wasn’t marked that way and I would have to wait 10 weeks for the appointment! Needless to say I went back to the breast screening unit and they sorted it out, but it caused me horrendous stress and anxiety. Take care. Please let me know if I can help in any way. Apologies again for the very long post. Ros 

I’m sure they do both breasts at our MRI scans as I asked 

funnily enough we had to tape a cod liver oil tablet to our right breast , so they can tell them apart ??

anyway must work  

( NNUH hospital in Norfolk - brilliant so far 

free food and drink today at chemo ! ) 

Hi Ros, I really meant to reply much quicker but I’ve been so busy with family commitments and all the Xmas and new year disruptions to my usual routine but as from today life goes back to a new normal for me and hubby is now back to work so I have had a bit more time to sort things out at home and catch up on  emails. 
i really appreciate all that you and the other lovely ladies have said so far and I have actually calmed down a bit for now probably because I have been focussing on Xmas and husband being at home etc. I think I mentioned before that I had my MRI on 22nd December and then as a result of that got an appointment through to go for an ultrasound of my left breast on 11th January. So although it’s all dragging on time wise with no results or next stage plans, I did get a phone call from the breast care nurse today trying to reassure me that because of the sensitivity of the MRI, it has shown up a sort of shadow on my left breast and the ultrasound is better able to decide what it is and they may do a core biopsy at the same time. She is also going to contact the MRI radiologist to see if I can get the little metal clip put in at the same time to save 2 appointments. Then they will decide if I need one or two breasts operated on. 
Apart from that I am also trying to chase up a CT scan I should have had around the time of my last trial infusion in December as normally would have an appointment for that by now but already I’m thinking there’s lack of communication between the departments as I know the breast surgeon was hoping to do a Ct scan done before surgery. 
Hope all is going well with you with your recovery. I know we are all different yet I can’t help notice such similar patterns in our breast cancer stories. I will get onto all these links people have recommended this coming week now that I have mor time. 
Take care and thanks again L xx

I’ve never heard of the cod liver oil capsule being used before and I certainly didn’t have one taped to me so I hope they have not got my breasts mixed up. Hope all is going well with your treatment and that you managed to have a nice Christmas despite the effects of chemo xx

Yes was definitely odd taping a cod liver oil capsule to my right boob ( my left one has cancer) 

but obviously they see it then , I did ask Re that too

They  squezzed  me in at 7pm on a Sunday , when the hospital was deserted 

yes my chemo cycle worked out great

my NYE session was a bit scary ( bad reaction) , but day 7 now, on the up again  

They told me the cod liver oil capsules are to mark nipples so  that tissue is marked as it is different density and not to be confused  with tumour.