acceptable time between mastectomy and start of chemo

Hi Gary, and welcome to the forum. It sounds like your wife has HER2+ and Triple Negative breast cancers. Does that sound about right? The other most commonly found types are ER+ and PR+ which are the hormonal ones, which she doesn't have. There are other ones too, but less common. When they send the tissue for analysis after surgery it can take up to three weeks for the HER2 results to be confirmed, longer than everything else, which could explain the longer time to see the surgeon. Did your wife have a biopsy when she was diagnosed? Have you been told the grade and size as well as they are factors when deciding treatment.

The current NICE guidelines for chemotherapy after surgery are ideally within 31 days, though in practice that can be impossible if, for example, and infection occurs as the surgery needs to be relatively healed (chemo affects healing). The delay in seeing the oncologist does seem excessive though, as even at a busy teaching hospital like mine I can get an appointment to see my oncologist the next week. Could you politely but firmly challenge that again explaining how it's affecting your wife's mental health. If they can't give a much closer date you could try contacting PALS, explaining about the delay and NICE guidelines. Your wife's results should have been discussed at an weekly team meeting, and appointments made to see both the surgeon and oncologist at that time.

Good luck, and let us know how you get on.

Hi, thank you for replying so quickly.

i'll try to go through it as much as i can.

initially,, a biopsy was taken, 1 week later, after testing we were told by the surgeon that he felt that  it could be triple-negative but one more test was needed, if it was triple negative then it would be chemo then mastectomy , 2 weeks later it was implied, slightly swerved around that it wasn't triple-negative or wasn't all triple-negative and that mastectomy then treatment when they know more.

surgery was done then and then 3 weeks later on Tuesday the 20th aug, we were told as before it doesn't respond to estrogen but that there were many very small cancers of varying types the initial lump was 2cms, my wife says stage 3 was mentioned but i didnt hear this and it might not of been this appointment. 

HER2 was never mentioned but it seems from what little I've understood that that would be right, mainly due to the Herceptin treatment.

he went on to say chemo and Herceptin would be used for her treatment, basically within 3 weeks for treatment to start.

there has been no infection.

my wife has Addison's disease, which stress and worry etc are really not good for.

I had intended phoning PALS but wanted to have my facts somewhere near straight before doing so.

im a bit of a reader and i need to know as much as possible but, although i kept asking for more detail, i was only told to address the oncologist with these questions.

im sorry this is all a bit haphazard but i have trouble putting a description into words.

Please don't worry about how you explained it - it was perfect, and it's a real roller-coaster ride for all of us!

Are they aware that she has Addison's Disease? I think that you should stress the effect that waiting will have on her health. The chemo is no walk in the park either, and based on what you've said so far you'll have to make sure that she is supported in that with good anti-nausea drugs, and a support system in place for when she needs to check symptoms etc., possibly by going to A&E or to speak to the breast nurse, consultant or staff in the chemo suite.

hi, yes they are aware of the Addisons, they had to give cortisol or steroid injections prior, during and after the mastectomy.

i will call the oncologist's secretary in the morning and if i get no joy, then i will speak to PALS.

my gripe is not with the breast nurses or the surgeon, they have been very good, really.

ps: i am clued up on the Addisons signs and when to just give more or higher doses or inject when required, ive sort of babied it for 3 years.

Hi Gary

My cancer journey seems quite similar to your wife's so here's my timescale.

Surgery on May 10th - mastectomy, then a 2 week wait for results which went to a 3 week wait because of the HER2 result which does seem to take longer.

I was also hormone negative but HER2 positive and my nodes were clear.  But I also had both DCIS (ductal cancer in situ - non invasive) and also some invasive cancer.  Could this be the different types that were mentioned?

Mine was stage 3.

I didn't get an appointment with my oncologist until the end of June which was a good 6 weeks after surgery. I think they like to wait for the surgery to heal, especially if they feel that they have removed all the cancer. My chemo treatment was explained as a preventive measure rather than to get rid of cancer, this they felt had been achieved with the surgery. However once I saw the oncologist I had my first chemo within a week. They also made it clear that the chemo was a must if I was to have Herceptin.

Could you call the breast care nurses and ask them to go over the diagnosis further as it sounds like you seem to have some queries left on your wife's diagnosis?  I know I did, it didn't all sink in on the first chat and actually I still have some questions despite having several people explain it to me.  There's such a lot to take in.

Hope this helps and I hope you get the answers/help you need for your wife.  It's such a horrible time for both of you.

XOXO

I'll second the point about healing as I started chemo six weeks after surgery and it feels swollen and tender since chemo, though I've been told that it will settle aftet chemo is over. 

Thank you justtheone,

Yes , your diagnosis does sound very similar.

Ductual cancers were mentioned but the whole appointment is a bit WHOOSH. And it's over and you really none the wiser.

I'd read various reports stating the chances of recurring cancers and survival rates are cut with the prompt starting of chemo, 30 to 40 days were higher than waiting 60 days, I can't remember the exact percentages but 70 days were not great, some of these studies were quite old, 7 years or so.

"Preventive was mentioned but for us tomorrow is a good time to start being preventive not 70 days time.

There doesn't seem to be much coordination between surgery and oncology, to me it's 100% obvious that after mastectomy or even before the operation took place that you would need to see the oncologist, so make the appointment then, why wait, ok the test need to be done but they'll have been done for at least 30 days before seeing the oncologist.

You just feel so useless all the time, my job in my eyes to protect and stop anything that hurts my family but with this, there's nothing other than support and it doesn't feel like enough.

I lost my mum 12 years ago to skin cancer which misdiagnosed for 2 years due too incompetence by the gp, she never got to start her treatment, it went from all is good to dying in 10 days, so my confidence in the system (not the hospital staff) isn't good .

I hope you are recovering well, take care x

Hi Gary, 

I can really understand your fear. I'm sure if my husband, who was always with me, had been in your situation, he  would have felt the same. Fortunately he was not, as from the beginning,the surgeon explained everything and didn't let us go until he was sure we knew what was going to happen. I still have the diagrams he drew for us......

My cancer was treated by a team and although I only saw them one  at a time, the protocol was decided by  them all meeting together and looking at my situation from each of their specialisms. I thought this was standard practise so that no treatment is given in isolation and it's a safeguard for the patient that nothing which is unnecessary is done.

If your wife's treatment has been determined by a team, it should mean that an oncologist has already been involved in her treatment plan. I know this doesn't make the chemo arrive any quicker but it should mean the team were not too worried about the slight delay. I expect they are confident the mastectomy has removed the current tumour and as the nodes were clear and subsequent treatment is a prevention, they feel your wife will be ok until they can start the next phase. I don't know if you would find that reassuring or not? Unless your oncology unit has a reputation for poor standards, I think I would look at this as a positive.  Your wife doesn't need to continue her treatment urgently.......

I had my tumour removed with a lumpectomy in 2015. I began my chemo 5 weeks later which took until the end of May 2016 and was followed by radiotherapy.  It was triple negative so I don't take anything else but to date, all is still clear. 

The experience you had with your mother was awful but fortunately your wife is not in the same situation. My surgeon told me ' You stopped having cancer the day I operated. The rest is preventative. '

Hopefully that is the same situation for your wife and yourself. The waiting is always a hard time........your wife will need your continued support over the next months but since the mastectomy was successful, you must both believe you are on the road to recovery.

Take care. Continue to enquire about the availability of earlier appointments and chat with your wife's BCN, but try not to worry. (I know....impossible....but I have to suggest it!)

Love Karen

Thank you Karen, 

All of your comments are giving some reassurance to us, it's just something you can't get from family and friends, as well meaning aa they all are, there just not where we are at this time.

Just hope at some point I can be as helpful.

Thanks again, to you all x

Hi Gary

As Karen has mentioned my treatment has been run by a team, and I do think this is the norm in the NHS anyway. Whilst you only see one consultant at a time they do, once a week, all get together and discuss the current patients in their care.  In fact one of my results I had to wait an extra week to see my consultant because their team meeting fell on Good Friday and they couldn't tell me the results until after the whole team had discussed my case.  That was very frustrating.

I think, because your wife and I fall luckily into the category of eliminating all obvious cancer with surgery alone then they feel they can afford to give our bodies a chance to heal before hitting us with the next nasty.

I'm well into my 3rd cycle of chemo now but each time my scar area and under my arm has swollen up during the first few days and then subsides again so giving the body time to heal can be a good thing.

My OH and I did a lot of Googling at the outset, then we scared ourselves so much that we agreed not to do it again, or at least do it together.  Some good advice I found on these forums when I first joined was to stay away from Google as a lot of information is out of date plus everyone of us is unique and there is no one size fits all.

I'm sorry to hear about your mother and it will definitely make it harder for you cope and to trust in the medical profession.

XOXO