Hello. I was diagnosed with lobular cancer, hormone receptive, HER negative, and had a left sided mastectomy on 6 September. The tumour was 11cm. I’d always had mammograms and the previous one had been 18 months before but the cancer had been missed and was thought to be cysts. When my breast and nipple began to change shape I went to see GP. After tests I was told that it had been growing for years! I’ve recovered well from the surgery but the biopsy shows that the three sentinel lymph nodes are all positive plus positive lymph nodes found in fold under breast. I’ve been told that I need chemo, followed by lymph node removal on LH side, then radiotherapy plus hormonal therapy and abemaciclib. The problem now is that 34 days after surgery and two weeks after referral to oncologist I still don’t have an appt. I was told that I would probably have to wait until at least three weeks after referral. I’ve Googled and found out that the NICE guidelines recommend chemo 30 days after surgery. If you wait more than 60 days, the 5 year survival rate is greatly reduced. Well, I am going to be nearer the 60 days after surgery by the time I actually received chemo, depending on when the oncology appt is. I’m going to chase it up tomorrow but I think my breast cancer nurse will just say that I have to wait. She said before that they’re very busy and that there are women who need it more urgently than me, before they have surgery. I can understand that waiting times are long but I’m so worried that the cancer will spread to other parts of my body. It had already spread into the tissue surrounding the lymph nodes. How long have others waited for chemo after surgery. Thank you.
Hi, I understand what you’re going through. Waiting for results and treatment can be really tough. My diagnosis was on March 23rd, I had a lumpectomy on April 17th, and I started chemo on June 16th, exactly 60 days later. I didn’t experience any complications from surgery, so the delay was mainly due to being on a waiting list, and there were also strikes going on that didn’t help. The NHS is fantastic, but they are dealing with a high volume of patients, so sometimes you have to advocate for your health. The nurses in this forum were incredibly helpful and guided me on steps to get a quicker response. On the flip side, I tried my best not to worry or be anxious because it can affect the recovery process. Wishing you all the best.
I hadn’t heard about the length of time between surgery and chemo being an important factor, so thank you for mentioning it. I had initial surgery on March 10th, then additional lymph node removal on 28th April, and I started chemotherapy on June 19th with no sense of urgency.
Because recovery from surgery can take up to 6 weeks, I’m suprised that chemotherapy is recommended within 30 days, but I suppose it depends on the grade of the cancer. Wishing you all the best in pushing for a start date.
Hi
Mine was about 90 days later- I had lumpectomy 7/1/22, then node clearance 17/2/22 and then my oncologist was on holiday and I wasn’t able to start chemo until 6/4/22- like you, I was panicking at the time but was assured that it wouldn’t make a difference with my picture. I had four positive nodes and was grade 3. I am still worried about it as I read that 30 day study but am nearly two years from diagnosis and on abemaciclib for another year so I just hope they know when it makes a difference for people and when it doesn’t.
Thank you for both replies. I managed to speak to a breast cancer nurse today and she told me that one of the two oncologists has left. They’ve recruited another who hasn’t started working yet and they’re just in the process of setting up his appointments. She said I probably won’t get an appointment for another three weeks or so.
I did explain what I was worried about after reading pathology report and she said she would look into trying to get a date for me and to ring her again in a weeks time if I don’t hear anything.
She just said to begin with “You’ve had surgery so that’s good” but she hadn’t noticed that the pathology report wasn’t particularly encouraging and that I will need lymph node clearance after the chemo. Not sure if this is called neoadjuvant as it’s before lymph node surgery, or adjuvant as it’s after mastectomy. I did ask surgeon why I’m having the chemo first and he said “Because we know that you will need it afterwards anyway”. Suppose that’s just the way he works?? My cancer is lobular, stage 3a and grade 2. So worried the wait will allow for metastasis. Will just have to be patient which isn’t easy. x
It certainly isn’t easy but I would say that you have had surgery and that is more important than the chemo. Im suprised they didn’t do your lymp node removal at same time as surgery but everywhere is different. I waited 2 months from my mastectomy to chemo, I dont think it makes any difference tbh. Try not to worry. Good luck x
Not sure where you’ve read that you need to start chemo before 30 days have passed after surgery. This is an article I found where it states the optimum time is 31 - 60 days - https://www.cancernetwork.com/view/analysis-reveals-ideal-time-period-begin-adjuvant-chemotherapy-her2-positive-breast-cancer
This is based HER 2 positive cancer. Mine is HER 2 negative. I’ll try to find the other link and post later.
Ive just finished the same treatments as you apart from the medication which i started 2 months ago. The waiting between treatments is hard i had a mastectomy on 26th August last year and didn’t start chemo until the 21st October. My hospital recommends 6-8 weeks between surgery and chemo . You only get chemo within 30 days if its the first treatment you are having. Try not to worry and let your body recover chemo
Here’s one that states the statistics you quote but it is from 2014 which is rather ancient in breast cancer world - Best to Start Chemotherapy Within 30 Days of Surgery. Most everything I find that is more recent than that says that 31 to 60 days is optimal after surgery simply because a person needs to heal up from surgery before chemo so that they can withstand the treatment with as little complications as possible. Here’s a more recent article that lumps all the breast cancers together but states that optimal chemotherapy needs to be done within 90 days of surgery - https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.e12054
Thanks for replies. I visited dentist for a check up today to get a clean bill of health before chemo (which is apparently necessary) but I was told that I need root canal treatment at a specialist dental surgery before I can have chemo in case I develop an infection and sepsis during chemo. Awaiting urgent referral.
If root canal can’t be done, as it might be too difficult to refill a tooth that’s already had root canal in the past, I will have to go to hospital for an extraction. I’ve been on alendronic acid which means it cannot be done at dental surgery because of the risk of bleeding and bone necrosis. This will all be delaying chemo further. It’s been 34 days since mastectomy. No appt date to see oncologist yet. Feeling depressed. x
So sorry to hear you have had all this waiting. I have decided that cancer treatment largely consists of waiting, especially in the early days. I am currently waiting for my follow up appointment after surgery which has a 4 week wait ( in Norfolk). Being as the surgeon afterwards told me the lump was ‘much bigger than expected’ and the SNB node biopsy showed ‘activity’ in several nodes it is a long wait!!! It’s totally rubbish isn’t it! I am ER+ HER- also. Really hope you hear soon. Also you have probably found it but as well as this great forum there is a brilliant group on FB called Breast Cancer Support X
Thanks everyone. Will try not to worry. x