Apprehensive re first appointment with Oncologist

Am due to see oncologist on Thursday and want advice as to the main points I need to clarify. I am going to Africa in late October for 10 days(whatever happens) Will I definitely have to have chemo? I was picked up (symptom- less) by screening in May; encouraged to believe that it was Grade 1-2 and lumpectomy and rads would fix it. Then found sentinel node was already compromised & tumour bigger than thought ( now know it’s 24mm invasive ductal high ER, high PR, but Her-2 negative.) After wide excision found ONLY sentinel node out of 15 was involved. Now still have grotty infection 3 weeks post surgery, tumour is Grade 3 and have worked out that I am 5.48 on NPI . I’m 65 - but 2 grandmothers, mother and 4 aunts lived into their 90s so had not prepared myself very well for this! Anyone out there similar?
topsymo

Hi topsymo,
My tumour was found on regular 3 yrly screening, like yours, non palpable, 2 cm ER+, HER2-, stage and grade 2, with associated intermediate nuclear grade DCIS. I am 4.4 on the Nottingham Prognostic Index. At WLE and node sampling, 2 out of 8 nodes were malignant, so went back for total axillary clearance; another node positive. I was initially told I would have WLE and rads, so when chemo was strongly advised, I was shocked…an understatement! My bc surgeon told me that at my hospital, they always advised chemo if the tumour was 2 cm or over, and with lymph node involvement. Not sure what other hospitals advise.My treatment was 5 yrs ago, and I had 6 x FEC, infusions every 3 weeks, but there are newer combinations these days like the taxanes,(taxol and taxotere) and I am not sure of the treatment protocol. If you do need chemo, your Oncologist may be able to arrange the infusions around your holiday, although I doubt you will be able to get medical travel insurance. If you already have it, it would be a good idea to advise the insurance company, otherwise they will most probably disallow a claim for any health issue.

Good luck with your Oncology appt next Thursday…if chemo is advised, it might be a good idea to ask your bc nurse about an NHS voucher for a wig…I got one for up to £120 and the wig is beautiful. However, I had the cold cap during every chemo infusion, and although my hair thinned on top a lot, and stopped growing, I didn’t need to wear my wig, except on a “bad hair day”.

The treatment can be tough, but somehow we find the inner strength to get through it, guess because we have no choice.

You will probably have a lot of questions after your Oncology appt, so do come back if we can help you…there is always someone with relevant experience, willing to share.

Take care,
Liz.

I would discuss the Africa thing with them - not sure they will think it’s a good idea if you have to have chemo as there are days in the 3 week cycle when your immunity is very compromised. Don’t want to worry you, but my immune system packed in on my very last cycle of chemo and I spent 6 days in hospital isolation having intravenous antibiotics twice a day, lousy as each infusion took 2 hours so all I could do was sit on the bed and read. This is not uncommon.

I went on holiday after I finished both lots of my chem (had rads in between) but I wasn’t comfortable with travelling abroad so holidayed at home. I didn’t want to pick up anything that would put my treatment on hold.

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I have had 3 chemo so far and am being very careful where I venture due to immune system especially low days 5 to 7 with me. So I wouldnt think Africa a good idea. I nearly finished up in hospital on no 2 chemo and have another 5 to go. The slightest infection and raised temperature and they have you in hospital.

I am 56 and bc was also a shock to me with my mother living to 83 and no known bc in the rest of my large extended family. I was diagnosed with multifocal and had to have a mastectomy. Grade 2 with 6/21 lymph nodes involved so a high risk of secondaries as well! Very hard to be optimistic with everything else I read on this site. But also personally know of many people doing well five years on with no recurrence. Chemo is offered to anyone with lymph node involvement even just one, anything over a Grade 1 and triple negatives as far as I can see and also anyone HER2+ as well as Herceptin.

Hi,
If you have taken out insurance at the same time as booking your holiday, you will be covered so at the worst you could maybe think you are just delaying it. There are some innoculations like live ones that you are not allowed to have so you might need to check that out, it may make the decision for you. I am so sorry and can understand why you want to go so much. As the nurse said to me, ’ u just might have to accept that you are giving up part of a year to make sure you have lots more to come and it is not really such a big part of your whole life.’ I think it might be best to go into the onc and just say, we had planned this trip, is it possible, will it make a lot of difference to my outcome.’ Before that check out with your GP what tablets and innoculations you need before the trip.
Good luck and so sorry you have this at all but hey thank goodness they spotted it. Doesn’t bear thinking about if it had been left longer.
Lily x

Thank you all for your comments. The trip to Kenya is SO important to me -it is to visit my son and family (my 10th trip) but specifically to take my two oldest friends to visit him- they are his godmothers and have never been to Africa, There is no question of another date next year as both have sick husbands and this trip has taken a lot of organising - and it’s just for 10 days. If the oncologist vetoes it I shall ask to postpone my chemo I think.

I feel I have already had so much of my life disrupted; I do believe there are some things more important than being a cancer victim- and I speak as the mother of a 35 year-old daughter, also with breast cancer .
Thank you all
Topsymo

Good for you!
I delayed Chemo for a week or two to visit my daughters boyfriend in Egypt. Travel insurance is a pain I took it out with PO, they just refused to cover BC related problems. You must be careful not to catch anything awful so you’ll delay it further.
Babs