Frozen with fear

summersday

Hi everyone

I've never posted on a forum before but the situation I find myself in has been so shocking to me I felt that I needed to connect with people that will understand what I'm going through.

A few months ago I noticed shooting pains in my left breast that seem to occur a couple of weeks before my period and then during my period. I put it down to perimenopause but thought I should get it checked out anyway. When to see my GP (I'm UK based) and she gave me an breast exam. She reassured me that she couldn't feel anything but said she would send me for a mammogram anyway. The 2 week wait nearly killed me. Everybody told me that breast pain alone was rarely a sign of cancer.......................and I wanted to believe them.

On the day of the appointment, I arrived at the Breast Clinic to have yet another exam by a Breast Nurse, again to be told that she could'n't feel anything and that the pain in my breast was likely to be hormonal. She gave me a Breast Pain lefaflet and said she would send me for a mammogram anyway because I was over 40 - I'm 41. I had the mammogram done within 30 minutes but the radiologist said she wanted to wave the results under the nose of the consultant 'just because it was my first one.' So I waited another 20 minutes and then was called back in for another mammogram on my left breast. She told me that the consultant wanted clearer picture of this side and then wanted to do an ultrasound. My heart sunk. I had to wait an hour for the ultrasound. The consultant didn't even check my right breast. She went straight to the left one and checked the upper half first. She said that it was normal. Then she asked me to lie on my side while she checked the side. That's when her demeanor changed. She became serious, pushing the ultrasound wand hard into my breast and twisting her head left and right as if trying to see something. After what felt like a lifetime she said that she needed to take a biopsy. I went into shock. Tears rolled down my cheeks and I just lay there as she took a couple of samples from whatever she'd found and samples from a couple of lymph nodes. She wouldn't tell me what she could see, only that we would have to wait for the pathology.

I put on my top and slowly walked back to the Breast Clinic clutching a little piece of paper she'd given me. When I got there I burst into tears and the nurse who had originally examined me came and spoke to me in a small room. She said that the consultant was very good and that if she was concerned that it was very likely to be cancer. I broke down and said that I didn't want to die. She promised me I wasn't going to die but the bottom dropped out of my world. Suddenly all I could think of was that I wouldn't see my daughter get married. I could barely talk or move and I've been like that for 3 days down. I get my results on Wednesday and am preparing myself for the worst.

All I can think of is my children who are 11 and 8. My poor children. How do I tell them?

Ingerp

First of all, you need to take a deep breath. If it is some form of breast cancer, it's highly likely that it's treatable and you will be fine. I'd recommend you not say anything to your children until you have more information. I didn't even tell my adult children until I knew exactly what the deal was and what the treatment would entail. It's kind of wonderful that you got the biopsy so quickly--waiting is often the hardest part. When will you get the pathology report? Try to remain calm until then.

summersday

I am due to get the pathology results on Wednesday so only 2 days to go.

Cancer is so indiscriminate, isn’t it? I don’t drink or smoke, train 2 hours of karate a week, eat healthy and generally take care of myself. I think is why I am so shocked - I never thought it would be me.

Thank you for your kind words of support from across the pond! What a wonderful community you have here........

xx

Moderators

summersday, sorry you are here and waiting... but wanted to say welcome! You're in good company here.

We know it's hard not to worry about it, but please know that many, many biopsy results come back benign. If it helps ease your mind, in the article What Mammograms Show: Calcifications, Cysts, Fibroadenomas from our main site, you'll learn more on different benign masses that can come from testing, including some that are especially common among young women.

Good luck, and let us know how it goes!

The Mods

summersday

Hi everyone

Well I got my results back and it’s not good news. I have a Grade 1 tumour (2.4cm) that has spread to my lymph nodes. The consultant doesn’t seem to think it will have spread past them but he wants to give me a CT scan anyway.

I’ll need chemo to shrink it and to blast any stray cells, then a lumpectomy and complete node removal followed by radiotherapy and the hormone treatment provided that the tumour has oestrogen receptors - we don’t know yet. With any luck it will be HER2 positive so there’ll be more weapons in the arsenal.

I feel stunned and numb. Somehow I have to tell my children tonight. I don’t feel reassured by anyone at the hospital so trying to reassure my children that I’m going to be ok is really tough.

Can anyone out there who’s had a similar diagnosis help me calm my fears?

Meow13

I am sorry to hear this. By doing chemo pre surgery you will know if it is working. Hopefully all the cancer will be gone. Good luck to you.

Peregrinelady

Summers day, you are in the worst part of this ordeal, knowing you have cancer, but waiting for more information. When you find out exactly what you are dealing with, let us know and more people with similar diagnoses will respond. My tumor was 2.5 cm and I had micromets in one node. I am 4 years out and think of cancer less and less each day. You will get through this, as have literally thousands of women before you. Please keep us posted.

Sjacobs146

summersday, I am four years out of treatment, and feeling better than before. I felt the same as you when I was diagnosed, so afraid that I'd never feel the same again. When I told my kids, I told them that I wasn't going to die from this very soon. The 5 year survival,rate for BC is around 98%. Most likely this will just be a small bump in the road for you, although it feels so momentusright now.

summersday

Hi lovely ladies

Thank you so much for taking the time to reassure me - I appreciate it more than you can imagine.

Turns out my breast surgeon got the size wrong. The tumour is 1.9mm not 2.4mm. The latter measurement is the distance from the nipple! I saw my oncologist last Wednesday and he was able to tell me that my tumour is both ER and PR positive but that the HER2 status is still unknown. He went through all the chemo procedures to make sure I understood everything (which I did) and I decided to test him to see if he would be honest with me. I had read that Grade 1 tumours don't always respond very well to chemo because the drugs target cells that are in the process of dividing and this means that they are generally more effective against faster growing cancers. So I asked him whether I could expect a good response from the chemo......................and he was honest and said it wouldn't be an amazing response but that it should shrink it enough so that the surgeon could do this thing. Really glad that I can trust him!

Had my CT scan (what a weird feeling when the contrast is injected, eh?) and then a horrible week of waiting to see if had gone anywhere else. Went back to work in the meantime and that was the best thing I could have done! My colleagues were completely amazing and supportive and even took me out to lunch! My manager said that I could work from home on the days I feel well enough to and I've even been given a company parking space (to avoid using the train) which is like gold dust! Before, I was 127th on the list!

Well, I got my CT results today and they were clear! God bless my tiny little nodes for holding back the tide! It's funny that I should feel such relief for knowing that I only have cancer in one part of my body. Now I need to put my big girl pants on and get fighting! I'm getting a marker put in tomorrow and my pre-chemo assessment done next Friday which involves an ECG and my PICC line put in. I guess chemo will start shortly after.

Rebecca

xx

Meow13

Since you are both er and pr positive grade 1 I don't know why your oncologist is not taking about hormone therapy instead of chemo. Did you get an oncodx test? That should tell you the benefit of chemo vs tamoxifen or AI drugs.

summersday

Meow13, I'm based in the UK and am having this treatment done under the NHS. Perhaps that makes a difference. I didn't even know it was an option not to have chemo. I was told that was because it was in the lymph nodes, it was important to have chemo to catch any floating nasties that might set up home in my vital organs. That and I'm quite small chested so they want to see if they can shrink the tumour small enough so that the surgeon can get clear margins and preserve the breast. I did tell him that he could take the whole breast if that would make things easier but he was quite adamant that he wanted to do the lumpectomy.

I don't know if the NHS do an Oncodx test - is it par the course where you are?

xx

Meow13

If you have fewer than 3 nodes involved oncodx test is valid. My situation I didn't have lymph nodes involved I had 2 tumors 1cm each I was er+ pr -, my score was high so chemo was recommended. I think oncologists tend to dismiss hormone therapy or postpone it until after chemo and radiation. But in certain cases it can be more effective. I chose to start AI drugs instead of chemo immediately after surgery.

Since it sounds like you have decided to do chemo before surgery you should see how well it appears to be working. If it doesn't have much of an effect I would seriously consider asking for hormone therapy that is also a systematic treatment.

summersday

Meow13, thank you for your insight.

My oncologist even said that due to the grade of the tumour it was unlikely to be that effective so I don't really understand why they've given me this plan given all the horrible side effects. I think over here it is an 'opt out' rather than an 'opt in' scenario. I certainly didn't decide to have chemo before surgery - I was TOLD that was what is going to happen!

It sounds like you have much more control over your treatment, which must feel very empowering. The closest I've got to empowerment was having my long hair cut into a pixie cut! I decided that cancer wasn't going to take my hair - I was! I got my hairdresser to snip off my ponytail so I could donate it to The Little Princess Trust which makes wigs for children with cancer. The rest of it I'm going to try and keep by cold capping. I guess I'll hop over to those boards before I start to see if any other ladies can give me some tips!

xx

Newfromny

My situation is different from yours, but thought it might encourage you, I had a large tumor 5 cm and a positive lymph node, probably 2 to 3 positive according to the MRI, I did chemo before surgery, had an ultrasound half way through to make sure it was shrinking the tumor and it was. I still ended up having a mastectomy but had a complete response to chemo including the lymph nodes. Because of the chemo they didn’t need to take many lymph nodes. I wish you all the best , hugs from NY , just know you are strong and will get through this.

Salamandra

FWIW, my medical oncologist in the USA (Sloan Kettering) said that if I'd had any lymph node involvement, she wouldn't even have sent for the oncotype, but just gone straight to chemo. I think it's because I was 'young'? (Under 40). I think different MOs have different approaches to the oncotype.

Meow13

summersday, one of the reasons as you point out is you are grade 1. It sounds like your oncologist is just going through the motions and not looking at your individual situation. If hormone therapy may give you a better chance of stopping this cancer you should go that route in my opinion first. However, that is only an opinion not an assessment. You may want to get a second opinion from another oncologist elsewhere.

Also doctors are not particularly concerned about how treatment may affect you they are focused on the cancer. I don't know if you considered cold capping if you do chemo but you may save your hair if it makes you feel better.

I know so many people that have gone through hell and back just to have their cancer return. Others have gone through the same route with success. Grade 3 sounds scary but it is probably easier to knock down than grade 1.

Also you may not require all lymph nodes removed, you should look into that. If you are treating cancer with a systematic approach it may not be needed. Be very careful with radiation make sure you check out the facility and their results. Many people come out okay but many receive irreversible damage.

countdooku

I just wanted to offer you some morale support here in the US. I had my 1st biopsy on 5/17 and then a 2nd one on 5/23. The waiting for test results is pure torture. In my case, I decided not to tell my kids until I knew what the treatment options were, projections of survival rates, etc. Mostly because I knew that my kids would be asking questions about that and I wanted to be able to answer some of that.

It's nerve-wracking and hard. Hang in there.

summersday

Newfromny, I can almost feel that hug from across the pond! Sending a bit squishy hug back! I've never been to NY. I'm going to put it on my list-of-things-to-do-once-I'm-better.........

countdooku, thank you for your support too. It's awful having to tell the kids isn't it? Mine took it much better than I thought. With my son, we talked about the science behind cancer, how it grows, how it hides from our immune system and how the treatments are able to target the cells. As a science enthusiast, he was fascinated by this and by discussing it in a pragmatic and logical way, we found we were able to distance ourselves from the emotion. With my daughter, we talked about resilience and that this experience will make us all stronger people. They both have a wobble now and then but I'm able to reassure them that the doctors are confident that they can get rid of it.

Meow13, I wish I had that freedom of choice! Over here, if you have treatment on the NHS it's all free but you're limited in your options. Getting a second opinion from another oncologist would be tricky unless I chose to go private but that is very costly. I shall put all your suggestions to him, though. It does seem a bit bonkers to go through chemo if there's not much chance I'll get a good response. In terms of the radiation therapy, my local hospital has extremely good facilities so I'm very fortunate and not at all worried. They've just installed a new proton therapy machine too - I think it's only one of two in the entire country! Some hospitals in the UK are dire. I wouldn't want to set foot in them let alone be treated in them.

xx