A very warm welcome to the Cancer Chat community RainbowCats although I'm sorry something was found on your latest mammogram. 

I know this must be very worrying, but if you can, try not to think the worst until you know more. Always so much easier said than done, I know, but I hope it helps to know that many of our members who have dealt with a possible cancer recurrence will definitely understand what you're going through, so you are not alone, and hopefully it won't be long until some of them offer you their support and advice.

If it would help to talk things through with one of our cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're really easy to talk to and will do all they can to answer your questions and provide you with any other information you may be seeking at this time.

We're here for you Rainbowcats and wishing you all the best at the breast clinic surgery when the time comes.

Kind regards,

Steph, Cancer Chat Moderator

Really sorry that you're in this position again. I can imagine its quite a shock. After my BC diagnosis, I thought if it happened again I would be ready but I've had a few cancer scares since and I was worse than when I was first diagnosed with BC. I guess it was because I knew too much. It's a daunting prospect to have to go through it all again. 

I have heard of women getting it twice, within two years of first diagnosis. Unlike you, they did have radiotherapy but it still came back. Cancer is a sneaky *** and no one can predict what will happen after a cancer diagnosis.

it may not be what you think it is. My consultant would call me up whenever benign changes were seen on a mammogram. 

I've got everything crossed for you and please let us know how you get on x

Thanks Steph I’ll definitely give them a call when I need some support :-)

Thanks for replying Magpiemaggie. I completely agree with you that the subsequent scares are more frightening because you know more about what a diagnosis could mean. I was overwhelmed with sadness at being called back for the biopsy and having no idea what they’d seen to require that left my brain filling in the blanks. I’ve now seen the consultant and unfortunately it is another BC. It is indeed a sneaky blighter. Slightly worse as it is invasive this time but they think it is only marginally bigger than last time. A MRI will give us more info to check that is the case. Fortunately they can do another lumpectomy rather than me losing the breast (this made me very happy!). This time they’ll need to take lymph nodes too to check it if it’s reached any of the closest ones which is a bit daunting as I like to exercise a lot so strengths exercises will be off the cards for a while. They’re doing genetic testing too which I’m hoping doesn’t come back positive. I’ll have radiotherapy and then tamoxifen. So much to take in so just going to take it one day at a time. I hope you don’t have any more scares x

I know its a strange thing to say but it's good they have caught it early again and can be removed via lumpectomy. Is there any reason why they didn't give you radiotherapy and tamoxifen first time around?

Don't worry about lymph node removal, the area was sensitive for a couple of weeks but I soon forgot about it and got back to living as before. 

Yes I feel caught between a mixture of feelings. Firstly, feeling very fortunate that it appears to have been caught early and is suitable for breast conserving surgery. Whilst also being scared about all the remaining uncertainty that might require a change in the treatment plan, like what more they might find in the next round of tests (like it being bigger after the MRI, a genetic issue that puts me at higher risk of other cancers or that it’s spread to any lymph nodes). Then there’s the fear about what side effects I might personally experience from lymph node removal, radiotherapy and tamoxifen having now read all the literature I was given.

It is noticeably different this time about how much more there is to consider and I feel quite overwhelmed now tbh. I’m going to explore any local support groups next week.

The clinicians assessed my risk last time and decided the costs of having radiotherapy outweighed the benefits, and I presume it was the same for the hormone therapy. 

It’s great to hear the lymph node removal wasn’t as difficult as it sounds. Any recommendations about how to make it comfortable? I struggled a bit last time to sleep comfortably but found putting clothes on over my head ok but not sure if it’ll be the same this time. Thanks Magpiemaggie :-)

Did they say what type of invasive is it, is it ER+? I

had both lobolar and ductal, my treatment plan did not change. Thankfully, even though I was told I only had DCIS before the op, my surgeon removed the lymph nodes anyway.

Was iodine injected into your breast last time? Because the reason my surgeon removed mine was because 3 of my lymph nodes reacted to the iodine.

I think a support group is a great idea, I didn't have one but got through mine with the support of cancer research uk representatives, who had a stall at my local health centre. 

In the meantime, there's alway us/me to help support you. 

Radiotherapy for me was no big deal, just tedious. I found tamoxifen to be horrendous. Thankfully only had to endure 9 months of it before moving onto anastrozole, which was more palatable.

As I had surgery in both breasts (reconstruction), I found my breasts were numb for months, same with underarm lymph nodes removal site. I had no issues with sleeping positions as I couldn't feel a thing. The nerves did return to my breasts and underarms.

Advice for those who have had lymph nodes removed has changed since my operation and the advice now is to exercise. Although I admit I ignored all of the advice I had at the time and did what I felt was right for me and here I am 6 years later very much the same person I was before the diagnosis. 

It’s really kind of you to offer your support I do very much appreciate it. It’s wonderful to hear you have come out the other end of all that treatment feeling like the person you were before the diagnosis. I’m going to hold onto that light at the end of the tunnel because I think you’ve hit upon the core concern that’s bothering me - losing the sense of who I am right now (because TBH I’ve never felt better about my body and fitness). 

I’m not entirely sure about how the types of invasive BC differ but I do know it’s 6mm grade 2, ER positive and HER2 negative. The MRI was requested as I’ve dense breasts so they want to check there’s nothing else. That must have been a shock to have the DCIS diagnosis and then find out there was more going on after the surgery. Sounds like a good decisive surgeon taking care of you.

I don’t know if iodine was injected into my breast last time. I just remember how clearly last time they said non-invasive, it won’t impact my life span, etc and this time the word invasive was used instead and it’s suddenly felt more serious. It’s hard to know if reading the literature is a help or a hinderance mentally. I think that’s why it’s so helpful to speak to people with lived experience. 

It’s good to hear radiotherapy was ok for you. Fortunately I live very close to where I’ll be treated so it should make the daily tedium of those visits a little easier. I’ve been reading quite a few threads and sounds like everyone’s experience of Tamoxifen is very different. I’ll try to approach it positively and carry on eating well, exercising and let the doctors know if there are side effects I can’t manage. Knowing other medications are available is reassuring. 

Yes the nurse gave me a leaflet at the diagnosis consultation telling me what exercises to do from the day after the op. I’m thinking of starting them before my op - firstly to get into a habit and also so I understand how my body feels pre-op doing these manoeuvres so, like you, I can listen to my body after the op. 

I understand your worry, I absolutely hated the 'new you' speach given to me by all and sundry - drove me nuts

I don't see why anyone needs to change who they are just because of cancer. 

The invasive diagnosis did shock me and I was angry because I thought I'd have made a different surgical decision if I knew but once I calmed down I realised I would have made the same decision. 

I see nothing in your diagnosis that would stop you from doing the things you love. 

The amount of lymph nodes they remove will depend on how many react to the iodine, you may be lucky and have only one removed. 

I have to admit I just got on with my life after surgery and that included grocery shopping, stretching to the top shelf for items and carrying bags of shopping, I got a right telling of from radiology nurse

I was keen to put that episode behind me. I did not want wrapped up in cotton wool. 

Everyone is different but do what you want to do and don't let cancer stop you x

Thanks Magpiemaggie. I really struggled emotionally for the couple of weeks pre-surgery. I managed to work to distract myself a little. I’m a couple of weeks post-surgery now. They removed 2 lymph nodes in the end. The first week afterwards I felt really calm because it was good to have that bit done and know that there was nothing else to know right now. I’ve followed their advice to the letter and, because I can’t exercise as I would normally, I’ve tried to head your advice to not let cancer stop me so I’ve just upped my walking to help me avoid lymphodema and make me feel mentally well. I did 40 miles this week just gone and I feel like I’ve done everything I can to recover well. 

However the morning crying has crept back in towards the end of the second week as we lead up to tomorrow’s post-op consultant appointment. There’s so much racing through my head about what they may or may not be able to tell me. I’ve written down lots of bullet points to make sure I ask everything. We’re virtually at 6 weeks since my diagnosis, which is the max they said it would take to get my genetic testing back but I still haven’t heard anything. I’m worrying there is something they’ve found and are saving for tomorrow. When I put that worry down I seem to pick up another one (it being in my lymph nodes; it not being in the nodes but getting high oncotype score, etc, etc). Like you I’m just so keen to put this episode behind me and I’m still struggling to see a light at the end of that tunnel when it will be over and ‘normality’ can resume. I’ll let you know how I get on. X