Feeling overwhelmed

This is my first post - here is a summary of my story.  I was first diagnosed with DCIS in my LEFT breast in 2011 and again in 2015 with removal of the affected area both times.  The second time there was not enough margin so it was back into surgery again and then officially classed as a partial mastectomy.  In mid-June this year I went for my annual mammograms which showed invasive cancer in my RIGHT breast.  As it had developed quite a bit my Surgeon said I would need to have a total mastectomy.  I had more tests including an MRI which showed that there was more DCIS in my LEFT breast (which was already approximately 30% depleted).  After consultations with my surgeon and much thought I decided to have both breasts removed - there didn't seem to be much point in saving what would remain of the left breast as the DCIS would likely recur, not to mention the possibility of invasive cancer developing.  I had my surgery on 11th July and also had 2 lymph nodes removed from each side.  When the pathology results came back they showed cancer in one lymph node on the right side, so back in on 20th July to have more lymph nodes taken on that side.  Thankfully they were clear which I was very happy about but now I have to have some Chemo in case there are any remaining cancer cells anywhere.  I am slowly recovering from the surgery and am managing to stay positive but still feeling fairly sore and a bit shell-shocked from it all.  I am nervous about the Chemo too, my initial appointment is on Wednesday 2nd August.  I would really appreciate any words of encouragement........   


  • AfraserAfraser MelbourneMember Posts: 920
    What an arduous path you have been on! Feeling nervous about chemo is perfectly normal and sensible, but it's almost impossible to predict how any individual will react until you start. Tiredness and nausea are the most frequent side effects but even those can vary a lot, between individuals and between various chemotherapy types. If you can take someone with you for your first appointment, that can be very helpful. They can take notes and prompt questions that you may not think of as the first discussion can be somewhat daunting. Remember that if your oncologist reels off a lot of side effects, you are not necessarily going to get all, or even many of them. You will need a few weeks, depending on what treatment you have and how often, to work out what impact it is having on your day to day life (hopefully it is devastating any cancer cells irrespective of how you feel, that's the whole point). I only had one positive lymph node too (single mastectomy though and 17 nodes removed - they looked decidedly suss but were just aggravated) and while I did have some side effects, including a couple of long lasting ones, I had no nausea or fatigue, worked through treatment and have never regretted having chemo. Ask about cold cap treatment, it may save your hair, but most of us have muddled through the bald phase somehow and enjoyed a new look at the end of it! It will sound like an eternity of treatment at the start but each one is one less, and you will be halfway through sooner than you imagine. Very best wishes.
  • primekprimek Broken HillMember Posts: 3,183
    I found chemo hard but totally doable and know if I ever had to, I'd do it again. Quite understandable you feeling nervous about chemo.

    I too had a bilateral mastectomy and also reconstruction. It certainly is a challenging time adjusting to all that has happened and the unknowns. Know we are here for you. Kath x
  • socodasocoda LeumeahMember Posts: 1,457
    Hey @Glen19, you must feel as though you've been chewed up and spat out!! So glad for you that your surgery is finally done - must have felt like it went on forever!! Just thought I'd pop on and wish you all the best. You have already done as much as you can to ensure your chance of recurrence is now far less and each dose of chemo is reinforcing that decision. Good on you, your determination is awesome. Big hug. Xx 
  • TonyaMTonyaM Member Posts: 2,462
    Hi Glen19, oh darl,what a crappy time of it you've had. This bc ride has more twists and turns than a roller coaster. I know what it's like to get a recurrence- gut wrenching! But you get your head around it and do what you have to do. You've done the right surgery for sure. Chemo is hard but doable. Take it bit by bit and come back here for support. Mine was 7 years ago and I'm ok now.I was 55 at the time,so no spring chicken.Get plenty of rest and put yourself first. Big hug.xx
  • fairydustfairydust Member Posts: 290
    @Glen19 the time will fly by. At first the word chemo shocked me deeply. You dont associate chemo with being a wonderful experience. It is an experience I would never say no to. While having chemo prior to surgery I was lucky to observe my inoperable breast tumour and cancer in lympth nodes shrink. 
    I was lucky to feel and see a hard mass gradually disappear. I eventually only had to have a lumpectomy.
    Of course I had side effects and at times very difficult. Look what I have got to show you now. 
    I am cancer free soon you will be to after treatment.
  • iserbrowniserbrown Member Posts: 1,643
    @Glen19 goodness you've been through the wringer!  Yes it is a scary time for you and the thought of chemo is enough to put the fear into anyone.  It is doable!  The Oncology team will make sure that they load you with information plus.  Take care and best wishes for your upcoming appointment and subsequent treatment!
  • ZoffielZoffiel Member Posts: 876
    It's not fun, but we plod through it. I've just done the whole chemo thing again after a recurrence. Twice is enough, thanks, but it is done and I'm now recovering. You must be just exhausted but you have come this far, you can do the next bit if you decide to. Good luck.
  • onemargieonemargie queenslandMember Posts: 429
    Hi there I was diagnosed may last year with TNBC in my left boob. Took it off so I only had to have chemo (8 rounds over 16 weeks) and not rads as well. Then decided 6 months later to take the other boob off as a prophylaxis even though the surgeon didn't feel it necessary but was supportive of my decision to reduce risk. My gut instinct told me to do it. I don't regret it. You will recover you will find the strength to get through it and side effects are different for everyone. Rest assured it is doable. You have been through hell and back that's for sure you are obviously a really strong woman so this will be the next phase in your bc journey you'll get there Margie
  • Glen19Glen19 Member Posts: 9
    Thanks very much to everyone for your supportive messages - just what I needed.  I will post again when I am into the chemo and let you know how I am going.
  • Glen19Glen19 Member Posts: 9
    Hello again
    I have had my first chemo treatment and the side effects weren't too bad at all!  The worst one was a thumping headache which started straight away and lasted for well over 24 hours but some strong painkillers helped a lot.  I am to have 6 treatments 3 weeks apart so if all goes well should be well finished by Christmas.  The soreness is also much less now so overall I am doing ok.  I do realise that subsequent treatments may be worse but so far so good.  The supportive comments from my first post were very much appreciated.

  • primekprimek Broken HillMember Posts: 3,183
    Let them know about the headache. I know of others who had the same and they counteracted something to help. Kath x
  • UnicornkissesUnicornkisses Central CoastMember Posts: 362
    @Glen19  I had FEC chemo first and the incredible headache started towards the end of the C big bag. It lasted well into the following day. Nothing eased it, but Endone made it possible to sleep for a few hours at night.
     Endone is only short acting but the Oncologist worked out how much I could take to get through the days it was a problem.
    The headache happened after each of the FEC infusions, I am sorry to say.
    I did not get them on Taxol.
    Endone will not help the constipation problem.
    I found using an ice pack on my head and neck while I was in the chemo chair, and again when I got home really helped ease the pain. The nurses in the ward supplied it for me while I was there.
    When I got home I had a double ziplock bag of rice in the freezer, and put it onto the back of my head straight away. It seemed to make the headache last a bit shorter time.
    The first two days of FEC were a write off for me, I just lay on the lounge.

    Your Oncologist can give you a script for strong pain killers if you need them.

    Give your Oncologist plenty of feedback for your side effects.
  • Glen19Glen19 Member Posts: 9
    Have had 3 Chemo treatments now and have had a few issues.  The headaches have continued although after 3rd treatment it was not as bad or prolonged as after first 2.  After the second and third ones I also had an injection of Neulasta (24 hours after Chemo) to help build up white cells.    Neulasta comes with its own side effects which were not too bad after the first injection.  However, several hours after the next one (last Saturday) I developed tightness in the chest and wheezing which became progressively worse.  I rang the Hospital and was advised to come in, they did multiple tests and finally decided that it was due to either a reaction to the Chemo or the Neulasta and discharged me after about 36 hours.  
    I have also had 2 episodes of developing quite high temps which were resolved with Paracetamol and rest on the advice of my team.  I am halfway through now, but next time it changes from FEC - D to Doxetaxel so I guess we'll see what that brings.  Still managing to remain positive most of the time but sure will be glad when it's all over.  
  • iserbrowniserbrown Member Posts: 1,643
    @Glen19 nice to hear you are on the better side of some of the treatment!   There is no rule book that says you have to be positive all the time!  Yeah, sure acceptance and positivity are good traits but also allowing yourself a little time out to wonder who, why, what, went, where.............and then get back to the madcap life of trying to do everything knowing that you've got us here to help you through!  Take care  xx
  • UnicornkissesUnicornkisses Central CoastMember Posts: 362
    Docetaxel comes with a different set of issues, but I didn't get the debilitating headaches, so hopefully you won't either.
    Watch your temperature for the first week after each dose. Mine crept up starting day 4.
    Docetaxel caused more bone and joint pain for me, including the Neulasta, it was quite sore especially around the chest and jaw. loratadine (Clarytyne) really helps there.
    Diarrhoea was pretty savage the entire time for me, and only let up about 2 weeks after the final dose. 
    Good luck with the final stage, you are half way through!
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