Recently diagnosed and going mad with the waiting and lots of questions!

Have I got breast cancer? Appointments and waiting for test results
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Hello everyone. I’m new to the forum. I hope I can have some help from the amazing group.

I have lots of questions and I hope it’s ok I’m just typing as I’m thinking ?‍??? 
I am 50, had my first biopsy results on 31st may. Showed grade 1 less than 1 cm invasive carcinoma with tubular features plus some LCIS. The MRI then showed 14 mm enhancement and no other abnormalities. 
One big question I have: Is the 14 mm all invasive carcinoma or could it be mixture of LCIS and invasive?

To begin with, I had biopsies after calcifications seen on first routine mammogram. Calcification area is 5 cm so they wanted to check the whole area. After the MRI and initial consultation, ended up having stereotactic biopsies which causes delays of course. Now I’m told I’m likely to have another biopsy so they decide between lumpectomy and mastectomy. The waiting part is very difficult and I’m thinking to insist on having a mastectomy this time to avoid more pain and reduce the waiting. My surgeon is also going away next week so will hand over to another surgeon which causes more delay potentially and I’m going mad with all these.

initially I was interested in reconstruction but now thinking not to go for it just to avoid delaying the surgery. 
Now I wish I had gone for mastectomy straight after the diagnosis but they refused to do it for me without further tests. 
I initially asked for it hoping I would avoid radiotherapy and protect my mental health! I knew the wait would be painful. They told me this is an emotional reaction most patients have when being diagnosed but they regret it later.
I hope I’m making sense. I’m finding it difficult to sleep and my thoughts are all over the place. 
I just want to get the surgery part out of way and get on with the rest. 
I also really don’t mind if they take as much tissue as they need. I’d be very happy with size A or B. I’m size D now. 
Sorry again for the big rant. 
Waiting to hear your thoughts 

Thank you xxxxx

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Hi Vita

This waiting is something you will have to get used to handling (and there are ways that work). You have a very early diagnosis and clinicians are always reluctant to remove healthy breast tissue, preferring lumpectomy to mastectomy, which is drastic. Like you, my instinct was an immediate mastectomy. I was being treated privately but it still didn’t speed things up - week after week, the diagnosis would change a bit until I had no option but full mastectomy. Hmm, that’s what I wanted a month ago? The fact is, during that month, they learnt so much more about my breast cancer and that informed my treatment. Breast cancer has so many variations - miss something and it means even longer treatment.

Please don’t imagine that, during this waiting period, your breast cancer is running rampant, spreading and making things worse. Most breast cancers are “remarkably sluggish” to quote one of my oncologists. Yours was spreading slowly (hence your stage 1 diagnosis) and it’s not going to spread any faster now so you must trust your team to have your best interests in mind. The language around breast cancer is alarming. ‘Invasive’ is alarming. But it’s simply a medical term to distinguish it from other types of bc, without the same meaning it has in our world.

Mastectomy v lumpectomy is always your choice. But please don’t think removing the whole breast is a guarantee you won’t be troubled again, as I did. It’s not. It makes it more probable but there are never guarantees. My mother had double lumpectomies twice, 20 years apart, and said she barely noticed a difference. The two cancers were unrelated too. Breast cancer is a somewhat weird disease! I had a mastectomy and full axillary clearance, plus all the treatments, and it still came back. It’s ‘luck’, not inadequate treatment.

The waiting. I would strongly advise you to start with diaphragmatic breathing (you’ll find instructions on YouTube). This needs practice, which takes your mind off things for a short while, and can be used in any situation as a calming strategy. There are NHS-endorsed apps like Calm and Headspace which have lots of suggestions and tools. I daily go to YouTube where Progressive Hypnosis has a wide range of resources. Cure Anxiety is a good one to start with. Obviously it’s not a cure but it really does help. Daily practice is most effective. I’ve been doing it for 4 years now and swear it’s how I’m handling things so calmly.

I’m sorry I can’t respond to all your questions. I strongly recommend ringing the nurses’ helpline at the number top right. It’s a fantastic service, whether you burst into tears at a sympathetic voice or bombard them with questions. They will always have the answers, without telling you what to do. The world of breast cancer is confusing and scary, with so many unasked or unanswered questions. Take comfort from the fact that two diagnostic levels have not changed your stage and, from what you describe, your treatment programme is likely to be relatively simple. That doesn’t make it any less anxiety-provoking unfortunately but the waiting is essential - so breathe, let the what ifs float away and find yourself a calmer place to be in for the next few weeks.

Wishing you a quick recovery,

Jan x

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Thank you so much Jan for replying quickly and the detailed information. I’ve had a look at some and seem to be very useful to reduce my anxiety. I’m trying to be positive and will call my nurse tomorrow. 
Thank you ? xxxx

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Hi @Vita1351 

 I really felt for you when I read your post . I didn’t feel qualified to answer a lot of it ( Jan has done an amazing job of that ) but I  wanted to reassure you about Radiotherapy . As a Grade 1 I wasn’t offered mastectomy I had lumpectomy followed by 5 Radiotherapy treatments . I did have some fatigue (unfortunately I had some difficult family problems at the time which I think delayed my recovery ) a bit of dryish skin and sunburn on one part of my breast and some itching .All was back to normal after a few months and I can’t say I’ve noticed any other problems - I have mild asthma anyway and that certainly hasn’t got any worse . The treatments themselves were not unpleasant either and the staff were lovely . 

 As Jan says unfortunately waiting is part of the game as is being asked to make decisions which is really hard if you feel you don’t know everything and obviously you want to make the best decision for you. As Jan says sometimes the waiting means that they will know more and can recommend a treatment pathway but if  you’re being asked to choose I would recommend talking it out with someone ( maybe the helpline here) - just make sure have all the information and say it all out loud and actually you might realise that you are leaning towards one path more than the other . You can then take that back to your clinical team with any other questions that might have been thrown up or suggestions from the person you have talked to about it.

I hope this helps

Joanne x

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I can remember the anxiety from 2003. It’s not always that easy to diagnose breast cancer so there is a process by which they look at mammograms, they carry out an examination of how the breast looks and feel for lumps, and then they carry out tests on any areas that they are concerned about which they call ‘lesions’. There’s a lot of terminology which makes you feel like you are in a foreign land where you are the only one who doesn’t understand what it all means.

Whether there is any sensible reason for all this I don’t know, but they can also be quite reluctant to tell you anything until they have a meeting called an MDT, a multi-disciplinary meeting where doctors come together with plastic surgeons, oncologists and nurses and discuss the best treatment option or options. Everything is standardised as much as possible so it’s based on the best research on outcomes. The guidance on what they call early breast cancer is available on line if you want to worry yourself even more! It’s produced by the National Institute for Clinical Excellence or NICE. The idea was to make sure that best practice is followed whether you go to a London Hospital or one in Norfolk, or in Cornwall. Or Wherever. Breast Cancer Now has some great leaflets on all aspects of breast cancer - from diagnosis to individual treatments. MacMillan Cancer also do some very good information booklets. 

Anxiety is very common as breast cancer is the most common kind of cancer affecting women, and a lot of women recover from it, but most people aren’t happy about losing their breasts or having them changed in shape or size so they don’t match. The treatments can be harsh too, as they have to kill cells that are human ones, rather than a kind of external disease so that seems to make them more unpleasant.

Luckily there are drugs that can be taken when people get severe side effects, so always tell the nurses and doctors if you experience anything unpleasant painful or frightening.

My experience was that i have got through the treatments, including surgery and found that there is more to life than breasts. I now feel I can cope better than I did as I faced the demon and laughed at it. It may be difficult to laugh now. But I did have a few laughs, as well as many tears along the way. I wish you every good wish and hope you get a lot of support from the Forums. They certainly helped me - day and night.

Seagulls

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Thank you so much everyone for sharing your experience and helping me keep positive. I feel better and I am glad I reached out. 
I’ve also looked at some other posts which has helped me. This is an amazing forum. Thank you xxxx

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Any update we will be watching

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Hi vita

Just an afterthought. Forget about “being positive”. Sometimes you might not reach your standard and will start blaming yourself for not being positive. The fact is, we go through a maelstrom of emotions and everyone deals with them differently. Everything is normal so, if you have a day when you fear you can’t face yet another blood test or X-ray, you’ll find a way through it because you know it’s what has to be done. That is true courage. If I have a panic attack and still manage to get to my appointment, I’ve cracked it!  The word ‘positive’ is very important - there is clear scientific evidence that a positive outlook can influence outcomes at Stages 1-3. Great. But what exactly is positive? Be yourself, go with your emotions, deal with those that you feel are holding you back and get on with what you really don’t want to be doing. To me that’s true positivity. Hang the pink tutus!

Remember diaphragmatic breathing (I have a dental phobia and was being examined by a new dentist last week. At one point, he told me I should remember to breathe. I was delighted because I’d just been breathing through my nose into my diaphragm and he’d not noticed!!)xx

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Thank you xx