Hi there. I have had a WLE about 3 weeks ago. I am due to have a second operation on lymph nodes in my chest area on 24th April. Thereafter I am due to have chemotherapy followed by radiotherapy. I am stage 2 grade 3. Lymph nodes in my armpit were clear.
i have some probably dumb questions I thought people could help me with. Before chemo a lot of women have their hair shaved off. Do you have to do this before chemo? Does it make the hair loss more bare able. If that is even possible.
Some times it feels like all of the treatments and terms used in BC is another language that everyone else was taught except me. I although I have been diagnosed with bc and am undergoing treatment I feel like I don’t know enough or that other people are more ‘in the know’
i can’t find any information about lymph nodes in my chest near the collar bone. I have been told it appears the nodes have abnormal cells and therefore it is best that they come out. The surgeon wishes to remove the entire chain of nodes. Is that normal? There is no information on the net about this. All I know is that I am pencilled in for this surgery on 24 April.
I also cannot sleep at night. Maybe it’s worth going to the doctor and seeing if they can prescribe me something since Nytol does not appear to be working. I feel ok after my WLE. I want to go back to work and get back to some kind of normal rather than wallowing in my diagnosis. OH is not understanding Mofe my need to do this, he thinks I should be at home resting all the time. I don’t need to rest. I am restless. I want ,y life back while I can and before I start any further treatment.
Sorry I just feel a little down and overwhelmed at the moment.
There is no such thing as a silly question! I escaped lymph nodes so I cant comment on that. However, I did shave my head, but not until the hair had started to fall out after my first treatment. I did it because I found the hair on my pillow and the amount in the brush every morning distressing. By shaving it off I only had one period of mourning, not a daily one.
I so agree with you about the language of the forum, it took me a while to unpick it - perhaps someone should do a sticky thread which is a phrase book! Once you get there though you can get so much support and information from this site.
In returning to work, there is some excellent information on the Macmillan website macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Workandcancer/Workandcancer.aspx which includes your rights and a toolkit for employers. I stayed off through chemo as my job would put me at infection risk but as soon as chemo ended I was back. It was the best thing I did even though my GP felt I should have a bit longer. They advised me no driving for 6 weeks after the mastectomy so I didnt get chance to return after my op. One word of warning though, check how sickness is monitored. I had 1 7month episode off, if I had returned for a while it would have been 2 and as such the next episode would have put me in line for a 3 way meeting with my manager and district manager which could lead to some form of disciplinary.
Good luck in finding normality - think I am getting there!
re hair: For some it is a control issue. “I’ll lose my hair when *I* decide and not leave it to fall out!” Ladies with long hair often have their hair cut short so sort of acclimatise themselves and get used to the shape of their head.
The other really good reason for shaving it all off is that before, and often while, it is starting to fall out, the follicles can be quite uncomfortable, to the point of pain. Don’t know your style but have you ever had scalp pain from a too-tight pony tail? Anyway, point is that shaving it usually relieves that feeling tremendously. Some ladies use the “cold cap” during treatments in an effort to keep their hair. Usually it appears they still have thinning, but many are pleased although the cold cap sounds horrendous to me! I did nothing, but when my hair started to come out in handfuls, I got a number 1 buzz, then came home and smoothed it off with my electric shaver.
Eventually I realised that I was having to keep shaving it!!,.so now I am letting it grow to see what happens. I am just over halfway through 6 months chemo, just started weekly Paclitaxel, and I am amazed and quite excited by the follicular activity up top!! … not so excited at having to shave my legs yesterday though!!
I’m not going to address your node question at this time, as it is way past my bedtime, and anyway, I’m not sure I can …
Hello
Re going back to work - as long as you feel you can manage it I see no reason why you shouldn’t go back to work. I think we all deal with these things in our own way - for some the thought of going back to work is out of the question, for others it is a matter of retaining sanity. I worked all through treatment (mx, chemo, rads, herceptin) as it helped me, as you say, not to wallow in it, plus I felt it helped retain normality for my children - if mum was doing most of the usual ‘mum’ things then it couldn’t really be that bad, could it? Also I was entitled to very little sick pay (1 month per year). Although I took off more than a month in total, they kept on paying me because I kept on making the effort to turn up.
I went back to work two weeks after my mx - as for driving I was told two to three weeks, so I took them at their word and was driving at two weeks. It helped that I had a right mx - no gear changing with that arm. I worked all through chemo, just taking a few days off each cycle. Here it depends on what you do - I have a part time desk job, in a small office. So I was not coming into contact with a lot of people (important as you need to avoid infections during chemo), I was not on my feet all day, and at the time I finished at 2.30 by which time I was getting rather tired. I couldn’t have worked full time.
Hi Kiranclair,
I think you have asked some very good questions. I would suggest you write a list of questions as they dawn on you over a couple of days and then arrange a meeting with your breast care nurse (BCN) or Oncologist (Onc). Some of your questions are quite technical and you need the experts to explain them to you. Whatever you do, dont go surfing the net for info; if you do want info online used well informed sites such as Macmillans, this site and Cancer Research UK.
The hair cutting I feel is about personal choice and control. I tried the cold cap. For me it didn’t work which was v disappointing at the time (it doesn’t work for everyone). This meant that I had my head shaved during chemo 2. I dont regret that now and at times was happy with my baldy look. Plus I found a couple of fab wigs and still use them when I am going out even though I don’t need to. I finished chemo in November and my head is now covered in short curly hair and I have even had a trim!
Working during treatment is also a personal choice, though you may find your treatment team have an opinion. Like others who have replied to you I was advised not to work as my job meant I was constantly in contact with the public and so the threat of infection was too high. As it turned out I didn’t feel well enough to work but that doesn’t mean I was completely idle during chemo: I answered emails, I did pop into work for a couple of visits, I did some research etc but all these things were done when I felt up to it. I have just returned back to work after a full 12 months away, even though I am on a phased return and have only worked for half days so far it is tiring even though I am delighted to be back.
Do what you feel is right for you and leave yourself room to make changes as treatment progresses. Best of luck with it all,
Helen
Hi Kiranclair
When I had rads (after everything else) I had them to several places, including the area around my collar bone. They said this was because of lymph involvement in that area. Hope this helps x
Regarding hair, I don’t know how short/long your hair is, It might be better to have it clippered to a number 3 or even 2 before hair loss, then when it starts to fall out it won’t seem so bad. I had a number two, and when a bald spot appeared across front of head, OH used clippers without a comb on, so I just had fuzzy felt at the back.
Another suggestion, although not in your question, it might be a good idea to look in the ‘having treatment for cancer, Chemotherapy’ thread and join one of the ‘group’ threads. Although I’m a February Valentine, I also pop in the March thread from time to time. There is also an April thread and I’ve tentatively begun a May thread in case anyone wants to join it eventually.
Good luck for your surgery later this month and of course for chemo when you start it.
Kiranclair
Like HJU63(Helen) said, you have a lot of unanswered questions about your surgery, the decisions made/reasons for it. Arrange to see your surgeon/breast care nurse soon, to discuss it all before your surgery.
Jen.
Kiranclair-some great advice on here. In my case I did not shave my head. My hair fell out all at once and it was very distressing but I still would not have wanted to shave my head. It is a very personal decision and whatever choice you make will be the right one for you. I worked through surgery (had op went back to work afterwards) and radiotherapy but there’s no way I could’ve worked through chemo. Others manage, again it’s very personal.
I too had no lymph nodes affected (had sentinel node biopsy) but one breast node was affected. No idea what the difference is but surgepon said that the breast node ‘had done its job’ in preventing spread to the lymph nodes. The very best people to ask are your medical team.
Good luck with treatment. You will find a great deal of support on this site if needed.
Hi Kiranclair
Immediately after my diagnosis I had terrible trouble sleeping - just 1 or 2 hours - and could not sleep at all during the day when I tried to nap. I also tried Nytol but it had no effect whatsoever. Eventually I called my GP and she readily prescribed sleeping tablets . I was very careful not to use them every night but I did use them when I felt it was important that I was not feeling too tired the next day. Apart from making me less tired, it was very reassuring to know that on some nights at least I would not have any night terrors, which are even more exhausting. I do hope this helps. I also found as time progressed and I had more of a treatment plan my mind slowed down a little and sleeping became easier. I did speak to a Breast Cancer Care nurse on the telephone and she was most helpful and reassuring. She did say that eventually I would start to sleep again as my body would become so tired otherwise - she was right!
Keep your chin up lass! You are not alone. I have not contributed too much to any Forum threads but when I have asked questions I have always had fantastic speedy replies and I have found following the threads very helpful. Good luck with your treatment.
Rachel
hi kiranclair,
i had WLE on 11th march and i started driving again on sat just gone, to be fair i probably could have done it before but i was being a wimp! Driving has helped with movement but it does make my arm ache by the end of the day. I’m not doing the amount of driving i did beforehand as i’m working from home.
With regards to going back to work, i went back after 3 weeks but i am able to work from home so i was able to plug in the laptop when i was able. I was relieved to go back and as i’m planning to go back to the office completely next week, the feeling of getting some normality feels great! its the little achievements that feel the best!!
can’t help about the lymph nodes in your chest, but i support what the others have said about only using the recommended pages for research.
I too am nervous about chemo and i’m twoing and froing on the idea of having my head shaved! but i will have to wait and see how i feel once it starts to fall out.
keep in touch/keep posting, i have found this forum such a great help
I worked full time throughout treatment - surgery, 8 x chemo and 6 weeks of rads. For me it was keeping as much as possible as normal as poss. I never asked for my teams opinion on working or not I simply did what I thought was best for me although after treatment my surgeon did comment he wished more women had my type of outlook! I think the answer is totally do what’s right for you.
My oncologist gave me sleeping tabs as part of my prescription every month. I was wary at first but they worked for me during that period and again wouldn’t hesitate to say use them if its going to help you.
There’s a useful leaflet on the komen site on lymph nodes and how they are linked - google that I think that will help explain about the nodes and those near your collarbone. I had internal mammary node involvement so I remember being confused about nodes and trying to find clear info!
