New to all this - positive - v - negative

Hi Baszia

Like you I got neg-v-pos -v-neg, a roller coaster. Was first told lump was cancer plus another area of concern therefore mastectomy. Results of biopsies only lump was cancer therefore change to lumpectomy and 5 shots radiotherapy - no chemotherapy.  After surgery to remove 3cm lump and sentinel node was told lump and surrounding area all satisfactorily removed and no spread to lymph nodes - elated. The next 30 mins a blur as consultant then goes on to tell me -whatever(!) -  all I could glean from this was that I was on the borderline for chemo or no chemo. Told me I didn’t have to have the chemo but did I want to discuss with oncologist - yes. After discussion and getting more statistics thrown at me than I thought ever existed (!) decided to go ahead. 3 x 3 weekly EC followed by 3x3 weekly Docetaxol Then told I was also oestrogen positive so letrozole for 5years after chemo and radiotherapy and 3 years of 6 monthly infusions of Zoledronic acid. 

Now to the Chemo - I was lucky in that I was still well enough to run our own business albeit my part is office based and I worked from home. Looking back I didn’t suffer too badly with the chemo and as for the radiotherapy? It finished on 14 December and up until now, I wouldn’t know I’ve had it.

Whilst I appreciate everyone is different, take heart in that there’s every possibility that you’ll be able to carry on with your work 

I wish you well on your journey. xx

Hi LizJon, 

So glad to hear that you have completed your treatment - i wish you only the best for your future. 

Thank you so much for writing back to me so soon.  Exactly, i do appreciate that everyone is different, but your words of encouragement are very welcome.  I can't run 5 miles, but i am strong willed.  I post edit documentaries for a TV company,  and shuffle emails for a group of jungian analysts.  Working from home, albeit realistic, i will battle on. 

Like you, a lot was a blur, a shock, words spilling out and not quite sinking in.  Thankfully my daughter was with me, and was able to go through it all when we got home. The Oncology team are phoning me on Tuesday with a pathway after their MDT meeting.  I had a 6mm cancerous lump removed, sentinel node, and told i was all clear.  But because of a protein marker, the surgeon stated i would have to undergo chemo as well as radiotherapy.  Hence their call post MDT meeting to me on Tuesday. 

Take care  -  Baszia xx 

Hello Baszia

Sorry it is on here that we meet, but welcome. You will find this forum a wealth of information and support. I had neoaduvant chemo i.e. before my surgery to shrink a large lump and give better surgical options of me. This involved 6cycles of chemos and heprceptin & pertuzumab which are ongoing for a year.  While chemo is something we would all prefer to not need. It certainly had a wonderous effect on my lump and two positive nodes, as it completely got rid of all cancer. The path report on the tissues that they later removed was all clear, although they could tell that there had been cancer in the nodes before as two were fibrosed.

Having chemo is a risk-benefit judgement. Your MDT must be confident that whatever the side effects, the benefit to you outweighs the potential negative side effects. You will hear about a horrendous list of possible side effects from whatever treatment you are planned to be getting. That is because your consent has to be fully informed consent. This means that you have to be told about every possible thing that anyone has ever had as a SE. It is important to remember that not everyone gets all of them, and some people get none of them. Your care team will give you support meds to combat expected side effects and it is important to take these to keep the SE away, even if you think you do not need them. When you know which chemo drugs you are to get you will find lots of folk here who have had the same ones before you. The community are very Good at sharing hints and tips to help you have the best possible experience.

Wishing you all the best.

WallyDug

Hello WallyDug, 

Thank you so much for reading my concerns and replying. 

I do believe this forum will be a great source of comfort, and hopefully in time to come, my replies may be a source of comfort to another who has just joined the group. 

I think i will feet better once the MDT meeting and appointment with the oncologist to discuss the treatment has taken place.  Hopefully in the next few days.  

I had also thought the same,  once treatment is fully discussed and agreed, i will be able to write a clear picture of what is to happen in the next few weeks.  And yes, i'm sure there will be others on the forum that will have had the same treatment plan.  It will be good to get some hints and tips, from keeping busy during treatment to wearing cold caps etc. etc. 

I completely agree, a short term interruption for long term gain is welcome.  It was just a bit of a shock, i was initially told that as the 6mm lump was so small, radiotherapy was the way forward.  And in a few short days, even keeping my circle small for privacy at this stage,  the few upon hearing the word "chemotherapy" all offer their sympathies at having to undergo this treatment.  Disappointing.  

Thank you again.   Wishing you all the best too. 

Baszia. 

Hi  sorry to hear you have to have chemo and radiotherapy but glad your surgery was successful. I had 6 cycles of chemo last year and it was nowhere near as difficult as I had feared. I worked throughout my treatment, mostly working from home, and other than a few hours each cycle, I managed fine. It helped that I could be flexible at work, so on the days when I felt a bit rough I could ease back and then work more when I felt better, but it was absolutely do-able.  

I know I was lucky and not everyone is as fortunate as me.  I walked a lot too, like more than 10,000 steps a day on average, and my oncologist told me that this would really help my ability to cope, so I took this quite seriously. Even days when I felt rough I managed a short walk.

I have blogged about my treatment but this one, specifically about chemo, might help you.  Good luck

Link to chemo blog

Hi Irishgirl16,

I only joined this group this evening and I have already had so much support and encouragement,  thank you so much for reading and replying.  Will also click on the log to your blog in a minute. 

It's very encouraging to hear that so many seemed to have coped quite well with chemo.  I know everyone is different and like you i work from home.  So i really hope that I can carry on.  It will fill my day, i live alone, and it will be good to keep busy.  

I have started to walk to, will increase every day.  My treatment should start in the next two weeks or so, and I will just keep going.  

Thanks again.  all the very best. 

Baszia. 

I am due my 5th round of chemo on Thursday and I don't want to sound negative because you don't need that at this stage, so all I will say for now is it is amazing what our bodies can cope with and go through. We are all different and we all get differing side effects, just remember how amazing are our bodies and how we are made plus that the doctors and nurses are doing their level best to help us heal. Jeanne

Hello Jeanne 

Thank you.  You are absolutely right.  I think what it is, my small circle all seem quite negative at the affects chemo might have.  I feel as though I am supporting them. I tell them that I know we are all different but there is a good chance of coping with the side effects with the amazing help and support of the doctors and nurses.  Perhaps like me, they are also a bit shocked at the speed everything has happened.  Diagnosed, operated on, treatment plan on Tuesday, all done in 3 weeks, which is very good.  I think we need  time for it all to sink in, take each day as it comes. 

Many thanks again Jeanne.  All the best.  Bastia. 

I am also self-employed and was worried about chemo but managed work from home throughout. I was tired and needed to take plenty of breaks, and often had a sleep at lunchtime, but it was very doable. I actually found it good to have my brain active when my body felt so useless - I am usually very active so I think I may have got a bit depressed not being able to do everything I wanted. I ended up working pretty long hours in the days that I did work. I tended to work from day 6 (my chemo was on a Thursday, and I felt OK to work from the following Tuesday).

I had EC-T and found the docetaxel pretty tough and the first round I couldn't work until day 10, but they reduced my dosage for the final 2 and I was able to work from day 7. EC I found fine, though I was one of the unlucky ones that vomited after the first cycle, sorted for subsequent cycles with even stronger anti-sickness meds.

I work a 40+ hour week so I ended up working that amount of time in the weeks that I was in, often 45+ hours. Looking back, no wonder I was tired!!

Everyone reacts to chemo differently, and although on the face of it, you should be able to continue, I told my work ahead of chemo and found them to be incredibly supportive and understanding and they gave me a huge amount of flexibility around when I could work which definitely helped me get through it. You have so many appointments during chemo that it is good to be able to be very flexible with your working hours. They were also very understanding when I had to take more time off after docetaxel.