I can sympathise with your worries Bookworm41 (although hope your mind has been put at ease now?). I've had lower back pain for a few days and there's no sign of it going away. I know back pain can be caused by a million things that are much more likely than cancer spread, but I stupidly read an article about Olivia Newton-John's disease progression which said that lower back pain was a symptom of her mets and now I'm worried anyway! I'm 31 and otherwise a very sporty and healthy person, and I've maybe just overdone it with exercise this week, but I guess it's worth mentioning to my breast care nurse anyway?? I've just started radiotherapy a couple of days ago, but doubt it's related to that.
Hello again bookworm,
It was not necessarily the chemo that has left me with the current issue, but it is possible that the mix of treatments have weakened what was previously strong, alongwith with just normal life!! It's frustrating because I am use to being physicaly active and I miss things like swimming, weight training and being able to walk without pain. Nevermind, if I am lucky I might be offered a pain relieving injection within a couple of months,(yes - said with a hint of sarcasm).
I am not sure about how usual it is to have a complete pathological response as I think it can be vary depending upon the particular sensitivities of the cancer, for example the grade of cancer cells, whether hormone positive, HER positive, hormone and HERr positive or triple negative etc. I did see somewhere that from a meta-analysis in 2016, it was put at 21% or so but that seemed to be across all cancer types which is relatively meaningless. I am sure my Oncologist said it was about 6% for people in my circumstances but that seems very low. Anyway, sod all that, it is just brill that your tumours have responded so well and fingers crossed for you that they keep shrinking.
One of the reasons for chemo first for me was to shrink the tumour (as I am relatively small breasted) so that I could have lumpectomy. At mid term it was even confirmed that I would have lumpectomy due to the amount of shrinkage. But in the end, due to rare consequences, it turned into a mastectomy. So, I think your Surgeon is more wise to err on the side of caution than mine was, and especially as you have 3 tumours.
If Tamoxifen is being recommended for you then your cancer is oestrogen positive too. Tamoxifen would be instead of the Anastrazole that I take. The drugs work in different ways, but both have the same objective in that they aim to reduce our body's access to oestrogen in order to reduce recurrence or development of new primary hormone sensitive cancers.
Anastrazole and the other aromatase inhibitor drugs - Letrozole and Exermestane are only offered to post menapausal women or women who have had an induced early menapause (whether through regular injections to stop ovary function or through ovary removal). Tamoxifen can be used for both pre-menapausal women and post menapausal women who are at low risk of recurrence or who can't stand the aromatase inhibitors. There are no guarantees with the drugs but in my opinion, it is worth giving them a go unless the side effects become too unbearable.
The Bishphosphonate treatment would not usually be offered as a breast cancer treatment as there was no evidence in research that it provided any benefit to pre-menapausal women in reducing bone spread.
Yes - finishing the main treatments should have been a blast ( I also had herceptin injections for a year as I was also HER2+) which finished in April. Unfortunately my back/leg issues started in March - so the Blast has not really happened yet!! I have also decided that "Moving On" is a bit more of a complicated process than first thought. I think it is very variable depending upon individual situations, conditions and treatments and it is better just to continue to take things one step at a time rather than expecting some kind of treatment finale with a band playing and champagne corks popping.
That is blooming brilliant regarding the diminishing tumours - really excellent news for you and it shows the chemo is being effective. The T part of the chemo may be a bit more strong but I really hope it blasts your tumours to oblivion like it did with mine and you get a total pathological response (as they call it).
Regarding the drugs mentioned. Anastrazole is an aromatase inhibitor which stops the production of oestrogen in postmenapausal women or women who have had an induced menapause. It is recommended as my cancer was hormone sensitive (ER8, PR2). It can assist in preventing recurrence of or development of new primary oestrogen positive tumours. There are no guarantees so it is still a bit of a lottery. I have been advised to take it for at least 5 years - or even longer but will cross that bridge if I manage the 5 year point. Side effects of it are very manageable at the moment for me.
The Bishphosphonate infusion is something relatively new. Bishphosphonates are usually given to people with oesteoporosis or similar to increase bone mineral density. However, they are now being offered to wormen, who may be deemed to be medium to high risk of cancer recurrence, as an adjuvant breast cancer treatment. Research indicated a benefit for post menapausal women in that it reduced reccurence in the bones which can be an initial site of breast cancer spread (metastasis).
It was also a no brainer to accept the Bishphosphonate treatment as Anastrazole can depete bone mineral density even more. When I had a Dexa scan to check out my bone mineral density, I was classed as oesteopenic and the Anasty will no doubt weaken this even more. So, the Bishphosphonates are serving a dual purpose as far as I am concerned in preventing oesteoporosis as well as recurrence. I have just had my 3rd one. I prefer to have an infusion every 6 months than take a tablet every day or week.
Keep hold of that lovely positive attitude and you have a great week too,
Lots of big hugs 🤗 🤗 🤗 to you too. Yes, I have finished treatment apart from the daily Anastrazole tablets and a Bishphosphonate infusion every 6 months for 3 years.
I was like you in that I had chemo first, also FecT. It can be beneficial to have it first in my opinion. For example, its effectiveness can be ascertained via regular monitoring, for example if the tumour show shrinkage. Fingers crossed that you get a total pathological response to the chemo.
I know it seems like a never ending crap time but you sound like you have a good head on your shoulders and you have your lovely family to hopefully keep you positively motivated. We all need support so you make sure you are kind to yourself to. I had many weepy moments to myself and found crying a release. I also preferred to talk to strangers about my fears or when feeling very challenged so I would ring up the BCC helpline occasionally or even the Samaritans to empty my head! You don't need to be suicidal.
I know what you mean about if you could have treatment without telling people. I was very similar. I only told most family the day before I went for surgery and that was only because I thought if something untoward happened to me during surgery, family members would be very upset with the family member who had known for some time and I could not stand the thought of that.
Take care and don't let your shoulders get too weighty!
Chick 🐣 X
bone met pain is persistent (doesn't really come and go) and tends to be one site only. You are going to have lots of odd aches and pains that normally you wouldn't notice, but because of the cancer diagnosis your first thought is always going to be 'is this cancer-related'?. Try not to panic until you have had persistent pain in one site for a week continously 🙂
PS I'm a doctor