Forum Discussion
dougal
8 years agoMember
Waiting for chemo!!
Hi Everyone, I am new to this network. My name is Debbie and I was diagnosed with Invasive ductal carcinoma, grade 2, HER positive amplified, oestrogen and progesterone receptor positive, tumour 23mm, on 5th July, so after a life changing shock, out of the blue as no symptoms, at 51 went for my first ever mammogram. Thank god I did as I'm one of those people that thinks nothing will ever happen to! as I live a healthy life, breast fed both my children, never smoked etc. Anyway,how wrong I was, thinking I was so healthy.
I have since had a right side masectomy on 13th July, but now feeling very stressed, as am still waiting for an appointment with the oncologist. There seems to be an issue after having surgery at Royal Perth hospital I am now being told I'm suddenly out of catchment area for treatment, although not told this when I saw surgeon. I cant believe how stressful this has become waiting for chemo to start and not knowing when. I would just like to ask everyone out there who has had chemo, how long after surgery they commenced it as I'm worried the longer I wait the less effective treatment will be. Any other advise also would be greatly appreciated. Love to hear from anyone out there.
I have since had a right side masectomy on 13th July, but now feeling very stressed, as am still waiting for an appointment with the oncologist. There seems to be an issue after having surgery at Royal Perth hospital I am now being told I'm suddenly out of catchment area for treatment, although not told this when I saw surgeon. I cant believe how stressful this has become waiting for chemo to start and not knowing when. I would just like to ask everyone out there who has had chemo, how long after surgery they commenced it as I'm worried the longer I wait the less effective treatment will be. Any other advise also would be greatly appreciated. Love to hear from anyone out there.
63 Replies
- SisterMember@emim The hair loss can be a bit confronting. Ask about the cold caps - it's worth giving it a go and if you can't bear it or it doesn't work well enough, then you can always stop. And you can have some fun with the baldness. @kmakm had crown henna done while I have oodles of scarves, caps and beanies and a wig for when I want to fly under the radar (many donated by some lovely women on this site). I'm pretty sure that I've read that there's a wig library in Canberra - worth checking out as you may find that you really can't be bothered with wig most of the time and hiring/borrowing one is a lot cheaper. Book in for a Look Good Feel Better course if there's one near you. You get a bundle of new makeup along with advice on applying it to counteract the effects of chemo, and at least in the one I went to, a woman from a wig business came in with a selection of wigs and caps to try on.
- EmimMemberHi all, starting on 24 August (one day after @dougal), I will have 12 months of herceptin, four cycles of TC chemotherapy followed by 6 weeks of radiotherapy and then 5/10 years of hormone therapy. 24 August is the Cancer Council's daffodil day, which seems strangely apt. My oncologist and his registrar were good and explained what to expect with chemo quite well. That said, it was a lot to take in. I am glad my mum came with me. I have a one hour information session with breast cancer nurses at the hospital two days before chemo starts, where I have been told they will go through things in a lot more detail, which I hope will help. My partner is supporting me on the first day of chemo.
While I appreciate that I need chemo, and that hair loss in the scheme of things will be temporary (and less debilitating than other potential side effects), I am bit sad and self conscious about it, as I have never had short hair. At least I know it is something that you, dougal, and others on this forum will be going through, or have gone through and come out the other side.
I have recently had two people try to help me by passing on "helpful" advice. In one case, a good friend of my partner's tried to pass on second hand information his wife read about people with cancer not eating meat, and it took a while for him to understand that I would prefer to follow the treatment plan I have decided with my doctors and research things for myself. I actually felt quite anxious when he was trying to tell me about it, and while I know he meant well, it felt like he was telling me that if I had a different diet this would not have happened to me. A male friend of a friend has twice tried to pass on information about fertility - despite me informing him that at 41 and with a 46 year old partner, we have already accepted that we will not be parents (other than to the three cats we currently have!). I think that if I had not come to terms with it, personal questions about having children would be quite distressing at this time. I have done a bit of research on what to say or do when people give unsolicited advice as I am aware that this is likely to continue to happen. Both of the people who have said things care about me and did mean well, and for that at least I am grateful. - jennyssMemberDear @dougal , @Emim , @Fletch, @Kellee and all. I am 14 months post surgery, 11 months pos chemo and 9 months post radiotherapy. As different as we all are, Very best wishes for your path ahead - head down, into it and out the other side.
- KelleeMemberHi @dougal I am also new to this site, 51yrs old, first mammogram, my tumour couldn’t be felt by hand so I’m very lucky, don’t drink, don’t smoke, breast fed 3 children and diagnosed with cancer in June, had my surgery August 1st. My margins were all clear, my nodes were clear, tumour was 14mm. The tumour was a grade 3 but early stages stage 1. I tested ER, PR & HER2 negative which puts me in a group of 15%. Because of the high grade and the triple negative I may need chemo. All along I was told I would require radiation, at no stage was chemo ever mentioned as an option. So you can imagine my shock, it was like learning you have cancer for the first time all over again. It didn’t help that I turned to Dr. Google. I decided to give this forum a try a few days ago and it has put me at ease. If I hear someone suggest “life change” again I’ll explode. In typical me style I worry about everyone else’s feelings and politely listen to their well meaning suggestions. Good luck with your journey
- kmakmMemberBloody well said @Ladysko
- LadyskoMemberHi @dougal - I did a mass facebook update and made the statement loud and clear that I am not interested in anyone telling me their "stories" on cancer. My thoughts are - If you choose Chemo - you have to commit to it. It is like studding for an exam or doing anything else really hard - you have to commit. Both feet in. I call it the golden elixir of life. Every breast cancer is so different. I also told people that if people tell me to keep positive I will ignore them. For me it is acceptance. it sucks that the cells in your body lost connection with the mother ship and went rouge. It just sucks. Accept. No one at fault. Just do what you can to provide a healthy environment for your body. Accept new boundary - move on. There will be bad days and hopefully more ok days.
Move on to choosing the path to fix it that is proven and that you can commit to. I choose chemo because for my breast cancer (DCIS + Triple Neg 10 mm invasive Feisty f@cker) the best survival rates proven were chemo, surgery and radiation. I don't have a long treatment but have an increased chance of developing Feisty f@cker version 2.0 within 3 - years post this one. Each cancer is just so different. You will see the oncologist a lot over chemo so don't be afraid or fear that you have all the questions or all the answers on day 1. There is a lot of support. There are side effects loads of them and depending on the treatment there are ways to minimise some. But it is doable.
My priority was - get a oncol. you trust. Commit to the process - it is a marathon. Accept. Ignore the noise - people say dumb stuff. Forgive them - for being humans and feeling unable to help you. I "politely" say - i am sorry but that is not relevant to me. I had people get a bit upset but whatever I focused on the people that are big enough to understand that you have to commit 100% to your path and doubt and what is the latest on google/news is not relevant.
Good luck on your journey I am glad you got the support you need. - EmimMemberThat's good that you have the next steps dougal. I had my appointment yesterday too, and my treatment plan might be similar, but not the same as yours. My surgeon passed on further pathology results post surgery that the tumour was HER 2 + whereas previously an ISH test had indicated it was HER 2 -, so that changed my treatment plan. I will be getting herceptin (trastuzumab) for 12 months as well as chemotherapy for at least three months (but it might be 4 and a half months) followed by radiation therapy. I have a choice with the chemotherapy which I am deciding at the moment and will let the oncologist's registrar know tomorrow after considering the information they gave me (as I haven't decided yet I have not gone into more detail about the choices here). I need to have a CT scan, bone scan and heart scan prior to chemotherapy starting in three to four weeks after I am healed from surgery (I am also a bit swollen around where the lymph node was taken out). It also may take some time for the herceptin to arrive, although the first cycle of chemotherapy can start without it. It was good to have more information about the next steps, although I was also a bit nervous about the appointment yesterday. While I have been told from the beginning that I will need chemotherapy and radiation therapy based on the type of cancer and my age, the oncologist confirmed it and went into more detail about what it will entail.
- kmakmMemberExcellent Debbie! Something solid and understandable. I had Docetaxel (that's the T in your acronym) but not the others so I'm afraid I can't help you specifically.
But I can say that they will only give you what they think you can cope with. In other words, keep your eyes on the prize, banishing BC from your life forever. You'll be surprised how quickly it becomes routine and then it's over and disappearing in the rearview mirror. No one gets ALL in side effects, and if you have good communications with your oncologist, which it sounds like you have, she should be able to help you stay on top of them.
Pop TCH in the search bar on the home page here and see what you can find.
Chemo sucks but cancer sucks more. K xox - dougalMemberHi everyone. I saw a lovely lady oncologist at Royal Perth yesterday who made everything a lot easier to understand than talking with the surgeons. So. I am starting TCH (Docetaxel, Carboplatin, Trastuzumab) Treatment cycle is repeated every 21 days. I will have 6 cycles. After 6 cycles, will just receive trastuzumab every 21 days for a further 11 cycles. Chemo starting on 23 August. I did ask if I could start next week, but they want to wait for surgery to heal a bit more as I still have some swelling around where lymph nodes were taken out.
I had to have two injections into arm for them to look how well heart is pumping, as a side effect of trastuzumab means the heart could be affected! great! so much to look forward to!!!. There are pages and pages of side effects for this chemo. If anyone out there has any good news, as in its not that bad! would love to hear some good positive stories from anyone on this same treatment plan. I am scared about some of the side effects, mainly the nerve damage one.
Good luck to Fletch with your oncologist appointment tomorrow, let me know how you get on. Hope your appointment Emim, went well today. Will you be on same treatment plan as me? - kmakmMemberAs my husband's grandmother used to say, better out than your elbow! K xox