New here...

I was diagnosed with breast cancer in September 2023, I'm 54 and live in Scotland 

I had two lumpectomies and two lymph node removed. I've been on letrozole since I was diagnosed.

Initially I was told I'd only need radiotherapy but due to cancer cells being found in one lymph node, chemotherapy is now advised.

I'd struggled with the knowledge chemotherapy was now a treatment option when I got the results of my last lumpectomy. Initially didn't want it but my surgery consultant convinced me to keep the appointment with the oncologist and listen to what they had to say. In the time since my results, (january) I decided that chemotherapy was something I was willing to go through.

My only other experience with a consultant was my breast surgery consultant and she was lovely, caring and sympathetic so I assumed the same of my oncologist how wrong was I

Saw the oncologist for the first time yesterday, awful experience, cold, impassive woman who instead of convincing me that chemotherapy is the way to go, managed to convince me that I didn't want it after all. Luckily the nurse who sat in on the appointment spoke to me afterwards and was able to explain in a few minutes what the oncologist wasn't able to do in the entire time of my appointment. 

I'm terrified of losing my hair, vain I know but my hair is what is attractive about me and I struggle with how I look anyway let alone without any hair.

I've been buying wigs over the past 4mths and other things for my chemo journey. 

I'm getting a call next week from the nurse to let them know my decision.... obviously I'm going with the chemotherapy. I'm just going to have to cope with what ever happens. 

I've to make an appointment with my dentist for a bone scan and will have to have a CT scan prior to starting chemotherapy to make sure the cancer hasn't spread, if it has the treatment will be life extending as no cure for secondary breast cancer.

Of course I'm terrified that it's spread, especially due to the length of time I've waited for appointments and results 

But on the plus side, if the CT scan is fine the worry it's spread will be one less worry.

  • As cancer cells were found in a sentinal lymph node that was removed during my first lumpectomy and no other lymph nodes were removed during my second lumpectomy. I'm terrified that instead of there "rogue cells" to be destroyed by the chemotherapy that instead when I have the CT scan prior to starting chemotherapy, that they will find it has spread. I've waited a long time between when I first went to my doctor and my "urgent" referral for a mammogram that took over a month. My initial diagnosis was quick then I waited ages for my lumpectomy with lymph node removal surgery. Then only a cpl of weeks before I was back in for a second one. Then waited nearly 6wks for the results and the news that chemotherapy is now a treatment option. I then waited over 4wks for my initial appointment with the oncologist. Understandably I can't help but think had they been a bit quicker I wouldn't need chemotherapy at all and it would have just been the radiotherapy mentioned when I was diagnosed. I was told chemotherapy would start in 3-4 weeks if next week I agree to having it. That's another month added on. I've been on letrozole since first being diagnosed, but the fear it's spread is constantly on my mind

  • The oncologist never gave me stats on things like the chances of it having spread, or the chances of it coming back or anything like that. Most of what she said i had to ask her to repeat because I couldn't understand what she was meaning. Even them i couldn't get my head around it, it made no sense to me. It was literally like she was reading off a script infront of her and if i asked a question it totally through her off.

    I emailed my BC nurse as soon as i got back home, but she's not replied and that was 2 days ago. I feel like I'm literally being left to rot 

  • As I noticed your posts went unanswered and that you're new here I wanted to stop by to welcome you to the forum, Cryptchick.

    I'm sorry to hear about your breast cancer diagnosis and the challenges you're facing with your treatment. It sounds like you've been through a lot, and it's completely understandable to feel scared and frustrated.

    It's good that you're advocating for yourself by reaching out to your BC nurse and seeking answers to your questions. If you continue to feel unheard or unsupported, consider reaching out to another member of your medical team or seeking a second opinion.

    Hopefully, other forum members who have had a similar experience will come in shortly to talk with you and offer some insight and advice. Until then, if you think that it could be helpful to ask some questions to one of our nurses, please know that the team can be reached on this number 0808 800 4040 Monday - Friday between 9a.m - 5p.m. 

    Stay strong, and don't hesitate to speak up for yourself.

    Wishing you strength and courage as you move forward with your treatment,

    Renata, Cancer Chat Moderator

  • Hello Cryptchick,

    I was diagnosed with lobular breast cancer, grade 2 on January 4th and I had a lumpectomy and 2 sentinel nodes removed yesterday. My consultant told me that breast cancer tends to grow slowly and few months should not make a difference. I had ultrasound twice in a space of 1 month and there is no difference in size. My current treatment plan is radiotherapy. I will have a meeting with my surgeon in 3-4 weeks when he will discuss the pathologist’s result with me. All scans including MRI didn’t show that presence of cancer in lymph nodes but it is not 100% certain. If cancer cells are found in lymph nodes, then I will be offered lymph node clearance and further CT scan. My treatment plan may change.  The waiting is awful and you are not alone. Each of us has different experience with treatment. Many found chemo tolerable and recover well afterward. Try to stay positive, I know it is easy to say. But you have been through two lumpectomies. Keep fighting xxx

  • I was told the same my lump was 44mm and didn't change from the initial mammogram/ultrasound/mri

    My lymph nodes showed clear in the MRI but once I had two removed one showed cancer cells. That's what worried me. The possibility of secondary cancer from the length of time since my first lumpectomy to when I eventually start chemo.

  • It looks good for you if no cancer in the lymph nodes, possibly will only be radiotherapy. I only had two lymph nodes removed one showed cancer cells, but was told that the radiotherapy would sort any possibly lingering ones.

    But that won't be until end of the year. If all goes well with my CT scan and my treatment options don't change. I won't be finished chemo until October

    I think your diagnosis is similar to mine apart from the cancer cells in a lymph node they removed x

  • I will know in 3-4 weeks if there is cancer cell in the 2 sentinel nodes that were removed. If there is, then I will be offered lymph node clearance. I would rather have both chemo and radiotherapy if that’s the case. It is what it is. The nature of disease and the system we have. We have little control over them. I try to stay calm and deal with good & bad news when it is presented to me. Keeping busy and have people with positive outlook in life around me helps. I will be thinking of you x

  • Och I'm the same, I just deal with it as best I can. 

    I wasn't offered lymph node clearance as they thought it would cause more problems than it would solve, and they'd removed the one with the cancer cells anyway.

    Yes, very true the only control we have is over what treatment we will accept and when it's this early I personally think I'd be daft not to do the chemotherapy even though the fear of losing my hair terrifies me, I'd rather have the peace of mind that I'd have protected myself as much as I can xx

  • I am with you 100% I have only mt my oncologist in person once and she is like a robot reading from a script. I've not met ant BC nurses only spoken to a support worker. I refused chemo as it wan't really explained to me, and I was told I couldn't have it without having more vaccs which compromise my immune system even more, talk about being out in the cold. I am now on further meds and have just had an ibandronic acid infusion with further meds I wasn't expecting. I have a phone appointment with a stranger on Friday will see how that goes.