Last week, we held a webchat about the long-term effects of cancer treatment. Lots of you joined us in the chatroom to ask your questions to nurse Allan and dietitian Jenny.
Topics included pain, weight management, staying safe in the sun, and the emotional effects of cancer.
The chat is now finished but you can still speak to a nurse by calling us free on 0808 808 0000 (Monday-Friday, 9am-8pm).
Here are all the questions and answers from the chat.
I start FEC 100 tomorrow and I am concerned more about long-term than short-term side effects, but my consultant was fairly dismissive of problems. I can’t see how you can put in such toxic chemicals can be good, surely they must be carcinogenic in themselves? Obviously at just 47 and having to go on to Tamoxifen as well, I am pretty depressed about having to become menopausal.
Other than the breast cancer, which I am hoping has been removed(it is all you can do), I am so fit and well for my age that it is hard not to get down.
Allan: It is not unusual to think about the long term effects of chemotherapy.
Some chemotherapy drugs carry with them a small percentage increase in risk of other cancers. We have some information on the long-term risks of chemotherapy here.
We also have some information on the side effects of FEC chemotherapy.
What should I do when my mastectomy scars become itchy in the hot weather?
Allan: Hot weather can often cause itchiness in scar tissue as it is a little different from normal skin. Simple unperfumed moisturisers can alleviate this.
What can I do about the weight I have gained during breast cancer treatment?
Jenny: Weight gain is a common side effect of breast cancer treatment but it is very annoying! Here is some advice about healthy eating you might find useful.
Any physical activity, however small, can help promote weight loss when combined with a healthy diet. Even doing small activities like a walk around the garden or a walk down to a local shop and back can help.
I feel so low down after treatment. What should I do?
Allan: Sorry to hear that some of you are feeling low after treatment is finished. This is something our Online Community members often discuss in the life after cancer group
Is it normal for my life to change completely after cancer?
Allan: Some people do change in many ways after cancer treatment. It can be difficult to pick up where you left off, and in some cases impossible. You are not unusual in any way for feeling this way. It may help to look at our information on life after cancer.
So many people seem to have advice to offer and one wonders how some are even qualified to advise: e.g. You shouldn't do this or that, you shouldn't eat that, are you allowed to do that, etc.
Allan: People often think they are helping by saying these things, but often make situations more difficult. If you ever want to check anything out or talk things through we can do this on the helpline 0808 808 00 00
How long on average does it take for your body to recover from chemo?
Jenny: Unfortunately it is very difficult to say how long it will take to recover from the effects of chemotherapy. It varies from chemo regimen to chemo regimen and from person to person. The consultant or specialist nurse is perhaps the best person to ask as they will know more about the type of treatment you are receiving.
My 13-year-old daughter is receiving treatment for leukaemia. She is concerned about long-term side effects in the future. Is she likely to be more prone to other cancers?
Allan: I can appreciate the worry about longer-term effects after treatment of a child. Some chemotherapy drugs carry with them a small percentage increase in risk of other cancers. We have some information on the long-term risks of chemotherapy.
How safe is it to go to the spa after leukaemia and chemotherapy? (For example the jacuzzi, steam room or massage?)
Allan: Complementary therapies are a great way to relax. If you are well at the moment there is no reason not to have spa treatments.
Massage is useful too. There is little evidence to suggest that a cancer can move during massage, but in general we would advise light-touch massage rather than deep tissue.
I had AML (acute myeloid leukaemia), so is that risk of it moving the same as it is for a localised cancer?
Allan: Massage would not cause recurrence and light massage is all right.
How safe is alcohol after AML?
Allan: After AML, alcohol is ok in moderation.
How careful does one need to be in the sun/heat after treatment for AML?
Allan: In terms of sun care a high factor cream that covers UVA and UVB rays is great, the higher the better. It is also good to cover up when out in the sun and stay in the shade as much as possible.
Here's some more info on staying safe in the sun
How safe is it to eat out after treatment? I've been in remission for nearly a year now after treatment for leukaemia.
Jenny: Food safety is a tricky topic. The lymphoma and leukaemia website have a good resource. Here is a link. There is a section on eating out included in there.
This link seems to be for people who are neutropenic. I am no longer neutropenic, thank goodness.
Jenny: There is a small section at the end about eating once your counts have improved. There isn't really anything specific you should be avoiding, as far as I am aware, if you are a year post neutropenia.
We would normally say to ensure your shellfish is from a reputable source, but if you are worried then I would avoid is. General food hygiene principles apply, the same as for the general population. With that in mind - if you have any concerns about food hygiene in any restaurants then I would avoid those restaurants. I would always ask if they cook the meals fresh when ordered.
If I'm in remission is my immune system completely back to normal or am I what they call "immuno-suppressed"
Jenny: that would depend on whether you are still taking any immunosuppresion medicines. If in doubt ask your doctor. If you are then your immune system is reduced - however that doesn't mean you are completely neutropenic. You would just need to be more cautious as discussed above.
How can I become a member on this site to talk to others who are going through cancer too?
If you aren't a member you can sign up for our Online Community here. There's lots of groups where you can find people going through similar experiences.
We have groups for different cancer types and also a Life after Cancer group.
I've always struggled with my weight. I am currently receiving treatment for breast cancer and have had a lumpectomy, chemotherapy and now just undergoing radiotherapy. I know what I should be eating but I just can't seem to get into the good eating habits? Apart from joining a group (such as weight watchers or slimming world) what help is there out there? I have not been able to work for seven months, so money is very tight and means I am sat at home all day eating and drinking.
Jenny: Often keeping a strict food diary writing down everything you eat during one day is useful. It can sometimes work as a 'shock' tactic so you realise what/how much you are eating.
Trying to distract yourself is also important so you are not thinking about eating. If you then do feel like you want to eat something, try drinking a large glass of water and waiting for 30 mins. Sometimes our bodies confuse hunger with thirst. I have included a link about healthy eating.
Also if you are worried about money the Macmillan benefits team are great to chat to. Their number is 0808 808 0000.
I too have struggled with weight. I handed my notice in at work because I had another job offered in March. I got a call the start of May to say job offer been withdrawn. So now find myself comfort eating. What can I do?
Jenny: That is frustrating about your job. The Macmillan benefits team are great for advice about money worries. It might be worth giving them a call on 0808 808 0000.
Also, trying to distract yourself from comfort eating with other activities. I know that doesn't always seem possible but even if you try not to buy in the unhealthy snacks that can be a help
For people struggling with weight loss, we also have some info about physical activity. Might be useful if dieting is a struggle!
As there have been lots of questions about weight, this link on weight management might also be useful for some of you.
Sometimes I just want surgery to sort out my weight issues.
Jenny: Often your GP can refer you directly to a dietitian for weight loss advice. Some areas also have specific weight management services that are useful. If not then hopefully your consultant or surgeon can refer you.
In the back of my mind part of me is always worried about relapse and death - is that normal?
Allan: It is normal to worry about the cancer coming back, it does get easier as time goes on but you will always be more body aware than you were before.
It might help to read some of our information about coping with worry and uncertainty.
Is flying safe?
.Allan: Flying is ok, for long haul flights you might want to help prevent the risk of clots.
I have been dealing with a brain tumour, surgery, radiotherapy and am now suffering from strokes caused by post radiotherapy damage, osteonecrosis in right knee and now having pain in tibia on same leg. It’s driving me mad as nobody seems to know how to deal with the pain - any advice?
Allan: I’m sorry to hear about the pain. Osteonecrosis can be difficult to control. I wonder if they have referred you to a pain team who may be able to help more.
I’ve been to see different orthopaedic consultants, had an op last year on my right knee to help osteonecrosis that made the pain worse. I’m on MST and Diclofenac for pain.
Allan: Your team may be able to access a Macmillan nurse through your GP. They are able to help with pain too and can sometimes access newer types of pain control.
I’m just about to start radiotherapy for a sarcoma on my spine. Had three ops and now 28 radiotherapy sessions. It’s all new to me so I don’t know what to expect?
Allan: Treatment can be quite daunting cant it? If you haven’t already you will have a planning session for the radiotherapy which really helps get a sense of what it might be like. We also have information which goes through some of the possible side effects.
I don't know how to describe it but I hate 'bothering' anyone up at the hospital, everyone seems to be in a rush and I am aware appointments are running late so I tend to now ask questions which I really want answering...this has been a fab source of information, will visit again.
Another chat guest: Totally agree, they always seem so busy up at the hospital, I never want to bother them.
Jenny: Try not to worry about 'bothering' anyone at the hospital. That is our job after all and we are there to help. Sometimes it can be useful to write a list of questions you need answered. Whether you ask your consultant or specialist nurse is up to you.
Another chat guest: I always list my concerns on my phone and then go through them during the appointments
Is it normal for cancer or change the focus of life and the importance of things that used to be important pre-diagnosis?
Allan: Is it normal for cancer or change the focus of life and the importance of things that used to be important pre-diagnosis. It is normal for priorities to change after any cancer diagnosis/treatment, you will find many people say the same thing. Often these changes in priorities are not a bad thing at all!
Can I still get help through Macmillan with my post-radiotherapy damage and osteonecrosis problems? Even though I’m not currently receiving treatment for tumour, as I’m stable?
Allan: Yes absolutely we help anyone affected by cancer at any stage. Give us a ring on 0808 808 0000.
If anyone would like to see what local support is available you can type in your postcode here and see what we can offer. Many of them will be information centres you can visit.
Can you tell me what initiatives are being developed in the UK to support the increasing numbers of us who have survived for decades after successful treatment for cancer, and who no longer have cancer, but who are experiencing late effects fas a result of both radiotherapy and chemotherapy. I know that a new service has been developed, the Breast Radiation Injury Rehabilitation Service (BRIRS), by the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD)in partnership with Barts Health and The Christie NHS Foundation Trust in Manchester.
However, so far, this service appears to be available only for people who have been treated for breast cancer, and only for people who live in England. As a 42-year-old survivor from Hodgkin lymphoma (stage 4B), living in Scotland, I clearly don't qualify, despite having had total nodal irradiation and six months of combined chemotherapy which has resulted in many of the same symptoms and signs as the breast cancer survivors, plus a few more besides.
Of course I am delighted to see that these issues are now being recognise, and to know that many people are already feeling the benefit of the multidisciplinary approach adopted by BRIRS, and it's for this reason that I'm so keen to see the same concern extended to others in the same fleet, if not the very same boat. Comments, please ... and thanks for providing this online platform - it's much appreciated.
Allan: There are a number of initiatives ongoing that support people with late effects of cancer treatment. Whilst the BRIRS service is within England, there are some clinics in Scotland. There is a late effects clinic within the Beatson oncology centre in Glasgow, they support haematology patients such as yourself.
You can find our recommendations on the results of our report “Cured - But at What Cost?”
Macmillan have also been involved in the development of a recovery package for cancer patients in England. In Scotland, we are supporting work on a holistic needs assessment approach for all cancer patients, launched a few months ago in partnership with Glasgow city council and NHS greater Glasgow and Clyde. We also have a range of resources on living with and after cancer treatment.
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