I am new to the BCNA blog. I was diagnosed at the age of 28 with grade 3, ER and PR negative, HER 2 positive and 2 positive internal mamory nodes involved. I have just completed my 6 months of chemo and now have 9 months of herceptin treatment to go. I am finding this a very daunting time in my life as having now completed chemo I am just so scared of the cancer returning. I have just had a review with my breast surgeon which all went well. My only concern is my routine scans only involve having a ultrasound and mamogram. Does anyone have CT scans yearly to see if it has spread? My surgeon advises me he relies on symptoms only! But how far do you let a symptom go before you run to the doctor? I am trying not to stress myself about it but can't help being a little paranoid!!!

Hi Erin, Like you, I have just completed 6 months chemo also and have Herceptin till November. I read about a typical response from women who when they complete chemo might have some anxiety resulting from the shock of previously having had so much medical attention through treatment to a feeling of being cut loose when it finishes. Even worse for those i think not having herceptin. I feel like this, I also feel like I want a CT scan now just to check, and I have this pain in my spine....could it be? It is a very weird place to be in, on one hand im feeling silly and paranoid, but on the other hand, its the feelings of thinking something is not right that took us to the doctor in the first place. Im still tossing up whether I will appraoch my GP to discuss how Im feeling. But i thought that after all the treatment and surgery is over we have CT scans or MRI yearly for Im not sure how long. I guess I have unanswered questions too. You being so young, you poor thing, to being going through all this. I thought 40 was bad enough! They must have thrown everything they had at you re treatment and surgery, and so many things for a young women to consider/plan with having a family etc. I have learned through this BC experience so far, that sometimes we just have to trust our medical team....but sometimes we need to take matters into our own hands and insist on whatever it is to settle our fears. Maybe its a second opinion, maybe its just a chat with a GP, maybe a session with the breast care nurse, maybe just blogging here on the network. maybe i'll make that appointment with my GP...... Take care Louise

Hi Erin, I am so sorry you are going through all this at such a young age (and you too, Louie!). This is what I was told about having post-treatment scans. I saw my breast surgeon yesterday after a scare with an infection (scar swelled up and was very red and sore - first time ever in 12 months) - and I asked him the same question. Should I have a PET scan to locate any cancer cells anywhere in the body? What if this was recurrence? He said that at present, with the infection, I would "light up like a Christmas tree", and that any "hot spots" could raise the blood pressure without actually being cancerous. He recommended having a scan if anything was unusual or really worrying me, or if the oncologist found my tumour marker levels had gone up considerably after each blood test. At present they were in the normal range and had come down since treatment. I had a bi-lateral mastectomy, so mammograms/US didn't come into it, but if I had concerns I would ask for a scan in a minute. I believe our intuition is as good as a symptom any time, so if you are worried, run with it. Wishing you both all the very best - big hug - Michelle xx

Hi Erin, I am so sorry to hear that you have joined us, I was diagnosed on 16 April 2012, right Mastectomy- Grade 3, ER and PR+, Her2-, the BC was found in my sentinal node and like you I had one internal mammary node involved. I have just completed my treatment, which was Chemo and radiation and am now on Tamoxifen for the next 7 years at least! I was 37 wehen diagnosed with three young children and remember thinking how unfair this all is. I am paranoid like you are and have been told the same by my specialists, 'we don't scan until there are symptoms'. I have learnt a great deal about trust throughout this journey, trust in my body, my family and my medical team. I am here to chat if you ever need. Jo

Hi Erin, You sound like me.. I had chemotherapy, radiation, hercepton, double mastectomy, all the rest. I think they really give you everything when you're young. I was diagnosed at 34. After all of my treatments finished, I was scared of everything. Every time something didn't feel right I would think here we go again.. But so far so good. I am back to good health, I won't say that I'm back to my old self, because that girl is gone. However even though my oncologist says that most people don't want all the tests on a regular basis, I insist. It really does help me feel calmer that if there was something going on I would know. So I go back and get the MRI, bone scans all that stuff. Even though it is depressing to go back into that patient mindset, it's worth it for the reassurance that it brings. You will naturally feel scared and paranoid, most people won't understand. But you need to insist on getting whatever you feel that you need for your own peace of mind. Especially that you have just finished chemotherapy you will feel the most vulnerable right now. Your mental strength will start to come back with your physical strength and it will get a bit easier. I'm having all mine redone next week, even though I'm sure all is good... Good luck with the herceptin I did it for a year and it was fine, didn't notice any side effects. I hope it's the same for you. Xx

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13 Replies

Michelle_R
Member
13 years ago
Hi Erin,

I am so sorry you are going through all this at such a young age (and you too, Louie!). This is what I was told about having post-treatment scans.

I saw my breast surgeon yesterday after a scare with an infection (scar swelled up and was very red and sore - first time ever in 12 months) - and I asked him the same question. Should I have a PET scan to locate any cancer cells anywhere in the body? What if this was recurrence?

He said that at present, with the infection, I would "light up like a Christmas tree", and that any "hot spots" could raise the blood pressure without actually being cancerous. He recommended having a scan if anything was unusual or really worrying me, or if the oncologist found my tumour marker levels had gone up considerably after each blood test. At present they were in the normal range and had come down since treatment.

I had a bi-lateral mastectomy, so mammograms/US didn't come into it, but if I had concerns I would ask for a scan in a minute. I believe our intuition is as good as a symptom any time, so if you are worried, run with it.

Wishing you both all the very best - big hug - Michelle xx
Michelle_R
Member
13 years ago
Hi Erin,

I am so sorry you are going through all this at such a young age (and you too, Louie!). This is what I was told about having post-treatment scans.

I saw my breast surgeon yesterday after a scare with an infection (scar swelled up and was very red and sore - first time ever in 12 months) - and I asked him the same question. Should I have a PET scan to locate any cancer cells anywhere in the body? What if this was recurrence?

He said that at present, with the infection, I would "light up like a Christmas tree", and that any "hot spots" could raise the blood pressure without actually being cancerous. He recommended having a scan if anything was unusual or really worrying me, or if the oncologist found my tumour marker levels had gone up considerably after each blood test. At present they were in the normal range and had come down since treatment.

I had a bi-lateral mastectomy, so mammograms/US didn't come into it, but if I had concerns I would ask for a scan in a minute. I believe our intuition is as good as a symptom any time, so if you are worried, run with it.

Wishing you both all the very best - big hug - Michelle xx
LouiseTurner
Member
13 years ago
Hi Erin,

Like you, I have just completed 6 months chemo also and have Herceptin till November. I read about a typical response from women who when they complete chemo might have some anxiety resulting from the shock of previously having had so much medical attention through treatment to a feeling of being cut loose when it finishes. Even worse for those i think not having herceptin.

I feel like this, I also feel like I want a CT scan now just to check, and I have this pain in my spine....could it be? It is a very weird place to be in, on one hand im feeling silly and paranoid, but on the other hand, its the feelings of thinking something is not right that took us to the doctor in the first place.

Im still tossing up whether I will appraoch my GP to discuss how Im feeling. But i thought that after all the treatment and surgery is over we have CT scans or MRI yearly for Im not sure how long. I guess I have unanswered questions too.

You being so young, you poor thing, to being going through all this. I thought 40 was bad enough! They must have thrown everything they had at you re treatment and surgery, and so many things for a young women to consider/plan with having a family etc.

I have learned through this BC experience so far, that sometimes we just have to trust our medical team....but sometimes we need to take matters into our own hands and insist on whatever it is to settle our fears. Maybe its a second opinion, maybe its just a chat with a GP, maybe a session with the breast care nurse, maybe just blogging here on the network.

maybe i'll make that appointment with my GP......

Take care

Louise

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