Diagnosis confirmed - Any Advice on treatment plans.

Hi Kelstar9

I just want to reassure you that you are actually at the worst stage of your treatment.  You are at the point where everything is up in the air because until you get the results back you can't think that "this is it and this is what is going to happen".

Be very careful with what research you carry out if you do decide to do some.  Only use Macmillan, Cancer Research UK and Breast Cancer UK.org as there are a multitude of other websites on Google and some are crackpot and others can be woefully out of date.

I was older than you on diagnosis - 51 and I've been NED (no evidence of disease) for 3 years.  I had 15mm IDC (same type as you) and then 54mm of DCIS.  My IDC was grade 2 and DCIS grade 3.  I had 8cm cut out and have just been left with a dent, rather than the LICAP - it was never offered and I only found out about half an hour before the operation that "you will end up with a dent", so already it sounds as if your team are being very thorough with you.  I didn't even know any information on the DCIS until a year later when I paid for a copy of my medical records.  I discovered then that I had 2 different types of cancer, but the team always treat the worst one, so I'm guessing it didn't really matter.

So for you, they are talking about ER+ (perhaps PR+ too) for your IDC.  Fingers crossed for you that it is 'just' ER+ as, like you say if it's not in the nodes then you won't need chemo,.but radiotherapy after.

As they have mentioned that "if the nodes are clear", it's promising that they actually think that your nodes are clear.  They will test the sentinel lymph nodes just to be 100% but they most likely feel that your nodes are clear.  I have found now that they aren't as forthcoming until getting actual test results.  The first year I had my annual mammogram I was told straight away it was clear by the lady carrying it out, the 2nd year, she wouldn't say and it had to be looked at by 2 doctors. At diagnosis, they kept saying to me that we're pretty sure your nodes are clear and there is no spread.  Whereas you can see they are wording it carefully with you by saying "if your nodes are clear", so hold onto the fact that they wouldn't mention "if your nodes are clear" if they thought for a moment that it may well have spread and for the vast majority of times, what they think from scans etc already done they will be pretty sure. If you are HER2 negative, then celebrate 'cause that is really good news!!  

For my lumpectomy (WLE) I had the operation at 4pm, (having gone in the day before for half an hour as an outpatient from work to have the blue dye injected). wires inserted earlier in the day as a guide for the surgeon and was home by 7.30pm.  It was a Wednesday and I was back at work on the Friday and driving again on the Monday.  I drove myself to radio (60 miles there and back) every day for the 15 sessions and was fine and I've been fine on the ER+ tablets too.  Some ladies will suffer, but don't automatically think that you will struggle /suffer with parts of your treatment because it's often the case that those people who have 'been there/done that/went ok - have left the forum and often those that are struggling will be on here asking for advice.

So, my advice is, try not to think of worst case scenario and take each part of your treatment a step at a time.  It really helps to break it down into bit sized chunks and deal with what you are going though as it happens.

For the moment, just focus on waiting for your biopsy results and don't think about the next steps until you know where you stand.  

I hope this helps.

Kindest wishes,

Lesley x

Hi Lesleyhelen

It is lovely to hear you are 3 years NED, and Thanku for explaining  NED, i wouldn’t of known otherwise, it definitely feels like I have a whole new language to learn. And I also want to Thanku for taking the time to explain what you went through, your words have been a great comfort.

You are right, the waiting period is really hard. I think I found it especially difficult as my team didn’t explain that, a few of my results wouldnt be ready at my last appointment, so they told me what they knew, but it still leaves me without knowing the first step in my treatment plan. I suddenly feel back at the start of the waiting period, which I was not expecting. And I found it extremely difficult!

Again, Thanku for explaining what you went through, and the parts of your treatment which could be similar to mine. This is a new world to me, and reading your experience rather than a clinical document I have been given. It definitely made me feel better about the next steps, whatever they maybe. I definitely feel that reading people’s experiences definitely helps, there is not much information around about the LICAP, it’s quite new from what I have been told, it’s about 6 years old. But it’s still a lumpectomy, and reading how you were back at work a few days later, shows that I could be back to normal quickly too, although everyone is different so I won’t pin my hopes on it. But it’s definitely something positive to keep in mind.

Also your words about the lymph nodes. I appreciate that it’s definitely not confirmed, and they only way to be absolutely sure is to test them. And it good to know my team is making sure everything is done.  But your experience has reassured me that when news comes, I do have a reason to feel positive about them. It may not be the news I want to hear, but I do have reason to be hopeful they are clear.

I am extremely nervous about the HER result, as that does dictate the direction of my treatment, I have been told. Like everyone, I really don’t want to go down the chemo route, and a positive result means that’s my next step. The consultant spent a lot of time talking about operation and seemed to want to get my operation scheduled soon, and the HER result being positive and doing chemo first will delay things. The way my consultant spoke, felt like if I get the operation soon, the active treatment should be very soon. With Chemo, it might take a lot longer. I not been told very much about chemo, in fact I been told nothing, so I have no idea what to expect.

Also Thanku for telling me a lot of people have left the forum, and cope well with the tablets. Again very reassuring to hear!

thankyou xxx

Hi, and a second welcome from me. 

The waiting game really is awful, fearing the worst scenario. But not everybody gets that worst scenario! Breast cancer treatment is much more tailored to the individual than it used to be. I escaped both bullets of chemo and rads, but am on oestrogen blockers for a minimum of 5 years (but I am now 75) I'm also over 2 years post mx. I stick around on the site as I have a daughter who has had an extremely long illness with refractory lymphoma (its in my profile) I was one of the first round of Community champions, helping signpost folk on the site, but left that role as she managed to get into remission and through her second transplant.

I agree that many folk have had their treatments and left the site, thats found in all cancer groups, I guess that may comfort you a little, too? . But some do stay to help. 

Sending you a big hug xxx

Hi Moomy

yes, Thanku for letting me know that! I was a bit nervous about the side effects of the tablets, and it’s definitely good to hear people do okay on the tablets and move on, But it lovely there are so many people who remain on the site to offer support and advice and share experiences. It’s really kind that you all give up your time to help strangers going through this. Your are all very kind.  I so pleased you & your daughter are doing okay.

reading through experiences and discussing similar treatments is definitely helpful for someone just starting this, it makes seem a lot easier, and you all explain things from personal experiences rather than a clinical point of view! 

thanku xxx

Hi Kelstar9

Welcome and as the others have said, waiting is definitely the most difficult part. Once you have a treatment plan in place, you can start dealing with it and it’ll be much easier.  I’m replying as I had an LTAP operation at the end of June, which is exactly the same as a LICAP but uses a different blood vessel, and you’re right, there’s not much information about it! My first operation was a Wide Local Excision and Sentinel node biopsy in December to remove an 18mm tumour with 45mm DCIS. During that op the surgeon noticed another large area of DCIS which was removed in the LTAP operation 6 months later, after my chemotherapy as I was HER2+.  I elected to have the flap reconstruction rather than a mastectomy and I’m really pleased I was able to keep my breast.

The LICAP was done as day surgery so was out the same day. I’ve not had too many issues tho there’s been some fluid build up which will take a few months to be reabsorbed by the body. I’m doing the shoulder exercises religiously to keep flexibility and to mobilise the scar, which is quite long - around 10 inches long from under my armpit to under my breast. I guess it depends how much volume needs replacing to how big your scar will be. Might be worth asking your surgeon to draw it on you during your planning consultation so you have an idea beforehand so you’re not surprised. My surgeon did this and I took a photo of it so I could look at it before my op to get used to where the scar would be. I had a clear waterproof dressing applied after my op so I could see exactly what they’d done, internal dissolvable stitches which don’t need removing and was able to shower from the following day. I was asked not to use deodorant for around three weeks.

Because of the 2 ops, my operated side is now smaller than the other but people would never notice it under clothes. My surgeon will review the results again in a couple of months and if necessary I can have lipofilling to fill in any dents or creases that have appeared.

I hope this helps. Please feel free to contact me if you have any questions or need extra information. I’m pleased you have a lovely consultant in charge of your care - it makes such a difference!  Good luck with your results xxx

Hi Loffie

Yes, definitely, the wait is so awful and my consultant has been very good, telling me on each appointment a lot of information. But still I am at that stage where I know a lot of what if’s, but still don’t know the next step, and that’s the thing which is hard, not knowing that next step, and still feeling in the dark.

I keep saying I am very lucky, my consultant and BCN, have both been very positive. I know we are waiting on tests, and I need to have my lymph nodes biopsies etc. But they has seemed to suggest, that I’m at a very early stage, and if the results are what they think they could be, treatment will move fast and I will be back to a new normal very soon. There are a lot of people in a worse position than me, but it doesn’t stop the nerves of not knowing the full story. It’s whether I have chemo, and all the questions about the how’s, when, what time etc.

Thankyou for going through your procedure, its good to hear from someone who has been there, and thank you for the tips, advice and chatting about your experience. Just a couple of questions. The information I been given about the op, is very clinically, from your experience, how well did you recover and regain normal functions in your arm etc. My information, only says sleep on back for two weeks, no driving for 2-3 weeks (cant drive anyhow but suggests I will have limitations) no work for 4-6 weeks. And not to over do things for a few months. Also pain management and bruising. I’m still extremely swollen and covered in purple bruises from biopsy, nearly 12 days ago, my chest looks terrible, so quite worried about bruising.

Thanku again and I hope you are doing well xxx

Hi again. Having had a lumpectomy first time round, I think I underestimated the LTAP op which is a bigger procedure and has taken me longer to recover from. I was more tired due to my body trying to repair itself and the pain was slightly more but considering the scar actually wasn’t as bad as it could’ve been.  I normally work in front of a computer all day but the surgery was on my mousing side so it did affect that. I’m lucky I’m ambidextrous with a mouse so used my right hand instead.  I took 2 weeks off, then worked limited hours for a further couple of weeks and definitely needed it. Listen to your body and if you need to rest or take longer to return to work, just do it. Your body will thank you later and you’ll probably have a quicker recovery overall.

Here are a few other things which might help:

- bras: because of where my scar is, I haven’t worn a bra since my surgery. I’m quite small and can get away with it luckily!  I found it irritated the scar. If you need to wear one I can highly recommend the wireless ones from Uniqlo which are supportive but soft

- I started driving 3 days after my surgery without any issues. My surgeon said he was happy for me to do so. Depending on which side your surgery is, you might want to use something soft between you and the seatbelt, as my seatbelt comes across just in the wrong place!

- I was given paracetamol and strong codeine (and lactolose!) to go home with. Used the paracetamol mostly and Codeine for a few days but the pain wasn’t bad. Use it if you need to especially at night to make sure you get a good sleep

- you will probably have some numbness after the op. I had some around my shoulder blade but what they didn’t warn me about was you can get some searing pain in this area. The day following my op, I had this and luckily was able to contact my surgeon who said it’s quite normal - your brain doesn’t understand that there’s a numb area so it overcompensates and produces a burning sensation

- the physio should come and see you before or after your op and give you a leaflet with some exercises and give you advice about what you can and can’t do. I was advised not to lift anything more than 1kg with my operated arm side for about 4 weeks. Movement is pretty good but you need to follow the exercises.

- stock up the freezer!

- as I wasn’t allowed anyone accompanying me to appointments due to CV19, I recorded my consultations on my phone so I didn’t have to worry about scribbling notes at the same time as listening. Really helpful for remembering what was said as I transcribed everything when I got home

I can imagine you’re overwhelmed at the moment and your brain scrambled with the ‘what ifs’. Once you get your results, take treatment one step at a time. Don’t be afraid to ask lots of questions - each appointment I have a load but then again I’m an analytical scientist and want to know the ins and outs of everything!

What’s really helped me through is the amazing support of friends. Early on I set up a WhatsApp group to let them all know what was happening with my treatment. It meant I only had to say things once, not 20 times! Talking about cancer can be quite wearing and it’s lovely to talk about something else otherwise it can take over. My WhatsApp has become a place to share jokes, videos and also if I need help with lifts or shopping, I just post a request.  Take all the help you can - it didn’t come naturally to me at first but I’m so grateful for all the offers I’ve had.

I managed to find this link on LICAP  which also might help answer some of your questions. Overall I think the advice you’ve been given on timings is pretty sound. You might need less or more time depending on your personal recovery. Hope I’ve answered your questions but feel free to reach out if you have any more as they come up. Hopefully not long til you get your results now - keeping everything crossed for you xx

Hi Loffie

Again, Thanku for taking the time to answer my questions. And finding some information for me. You are extremely kind. Sorry about the delay in responses, I am trying to keep busy this week, to distract myself, so very little me time.

Your answers have definitely made me feel a lot better about things as my surgeon is confident I will be having the LICAP at some point, so knowing you recovered in a shorter time, than stated and was not in too much pain is good to hear. But obviously I should be very careful not compare myself, not to push myself, and to take my time. The actual operation doesn’t worry me to much, it was the recovery. And your answers have helped.

I work in science. And I am someone who doesn’t like the what if answers, I am very black and white and want answers. And working in science, we all know things do go wrong, but you fix them quick and get back on track. So the delay in knowing my first step is the worst. I know some bits, but no clue how to get there, or where to start!

Thanku so much, for everything. I will definitely post about my experience after the operation, as there is so little information out there on LICAP, and I definitely want to help those who are in my position, as you have helped me!

XXX

Hi Kelstar9 

sorry to hear your diagnosis.

I am newly diagnosed with very similar situation. From reading the replies to your post I see I’m lucky as my cancer is HER2 negative. I have been informed that they cannot rule out chemo at this stage.

i have found this time particular difficult as I’m waiting for dates and treatment plan is ifs and buts. 

It is good to share information and be able to support each other.

i hope your treatment goes well. Xx

Hi Dion

I am so sorry to hear about your diagnosis and you are in a similar position. And you are right, the waiting has been awful. Hopefully my wait will end very soon. My consultant has been good, giving me as much information as she could at each appointment. I think she was trying to save me from the stress of waiting, but I personally found it very difficult not knowing the first step.

The support from everyone on here has been amazing, the time each person takes to carefully explain, any question you have, and to let you know it you can get through it. That first day is so scary, but then you find all these amazing people who make it sound a lot better. It’s not easy, but having people on your side who understand how you feel as they been where you are, definitely helps.

Chemo is something I definitely want to avoid. Again I don’t think it will be ruled out, as they have not tested my lymph nodes. And I will definitely keep my fingers crossed for the both of us.

I hope everything with your treatment goes well xxx