Hello and thanks for your post

I’m sorry to read about your diagnosis and appreciate how difficult it is waiting for things to happen after this news.

Many people worry that their cancer will spread while they are waiting for appointments and to start treatment. But we do know that most cancers grow slowly, so waiting a few weeks does not normally affect how well treatment works.  However, waiting any length of time when you are worried is stressful.

In the UK there are targets for maximum waiting times to start treatment. Ideally, there should be no more than 2 months (62 days) wait between the date the hospital receives an urgent referral for suspected cancer and the start of treatment.

We have more information about cancer waiting times on our website here.

Hospitals will do their best to meet the cancer waiting targets, however many are finding this difficult. This can be due to staff shortages within the NHS.

It’s good you have an appointment coming up in the next three weeks where I hope you will find out more.

Give us a ring if you would like to talk things over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Kind regards,

Celene

Thank you Celene for your reply. I do appreciate that they are really busy, just worried as I've been told I have grade 3 and it's fast growing. Last mammogram was only 14 months ago and all clear.  I now have two lumps and further cancer cells in breast tissue. Half of my right breast is affected. Can't help but be concerned. X

 Quick update- Got a call to say my appointment has been brought forward to 14 February. Apparently I'm on a priority list, so they are trying to fit me in ASAP. I'm much happier with this.

I was diagnosed with the same mid September 2023. I had left breast Mastectomy and all armpit lymph nodes removed at the end of October. I was told I’m cancer free since surgery. Oncology want to do preventative chemo, 2x9 week blocks, 3 weeks radiotherapy and herceptin injections for a year. I’m confined to a wheelchair because of lifelong physical disability. I’m worried about possible treatment side effects as I’ve not much support to help me deal with them if they occur.

Hi Corrielea, sorry to hear you have been through this too. Unfortunately I have to go through chemo first with Herceptin, before having a mastectomy.  Think is is because it has already spread into breast tissue. My oncology appointment has now been moved from 26th February to the 14th February, which is better. It must be difficult for you to having a disability as well. Have you talked to your care team about your worries about side effects? I'm  sure they will be able to reassure you. Wishing you well in your journey moving forward. Xx

Hello Corrilea and thanks for posting

I know you haven't asked the nurses a particular question but I thought I would pop on and say how sorry I am to hear about your diagnosis and the challenges you face. It sounds like you are going through a lot.

All treatments I'm afraid have potential side effects and people vary in this and this is why each they need to weigh these up when making a decision about what is best for them.

I wonder if you have a breast specialist nurse involved in your care then perhaps they can provide you with some support and information. You often have to call and leave them a message and they will get back to you. 

If we can help in any way then do give us a call on our helpline. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Kind regards,

Celene

Are there any clinical trials for HER2 positive breast cancer? I start preventative chemo on Monday.   I had a left breast mastectomy and all armpit lymph nodes removed at the end of October. I’m confined to a wheelchair because of spina bifida and hydrocephalus. I wouldn’t manage to deal with chemo side effects at home.

Hello Corrielea and thanks for your post

When breast cancer is diagnosed standard treatments are usually given first as these are thought to work best and this has been proven through clinical trials.

People vary in the side effects they experience during chemotherapy. Some people find that as treatment progresses it can take them longer to recover but not everyone is affected this way. It's hard to predict how you will be. It's often seeing how things go and taking it one step at a time.

We have some information on our website on chemotherapy treatment here and on everyday life having this treatment which you can see  here.

We are often asked about trials and we usually suggest that when people are interested in joining one that they discuss this with their specialist as they are often aware of trials that are going on.

We have information about taking part in trials and a clinical trials database on our website, which you can look at. This lists the trials that we are aware of and have permission to put on the website. You can search for breast cancer trials at this link.

Most trials will exclude people who are currently having treatment, or have had other treatments in the last month or so. For each trial entry on our database there is a “who can enter” box which explains the entry requirements for that particular trial, and at the bottom you can read where the trials are taking place (location).   If it looks like an appropriate trial, your doctors can then send a referral to the doctor running the trial at your nearest participating centre.

I hope this is of use. Please get back to us if you need any more information or support. You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Kind regards, 

Celene