Update From Oncology Mixed Emotions

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Hi, Im Steve,

My wife was diagnosed before Christmas with what the gyno described as possibly stage 1b adrenocarcinoma. We had a hellish wait over the festive period undergoing an MRI too, to see what we are battling.

Today we received a call from an oncology nurse to tell us that from the scans they could see it hadn't spread and that it was a large stand alone tumour on the cervix. They also said they had a consultant in the next city who wished to take the case on and wished to resolve this with surgery only and no chemo / radio. The surgical procedure would be a radical hysteroctomy and they dont intend to give us the option of harvesting eggs as this can cause delays and they want to do the durgery asap.

I am so happy and relieved we caught this early and there is a clear quick solution. However we are crushed that we don't have kids yet and wanted to try soon.

I spoke to a Mac clinician who said to ask lots of Qs at the meeting with the consultant in the next fornight and ask what the full rationale for the radical is and why we can't have a radixal trachelectomy or egg harvest to protect our chances in the future. I know even with the trach there can be complications conceiving too.

Has anybody any experience of or heard of cases where consultants will re-consider another option to protect our desire to try for a family later.? My wife's health is paramount I just want to know we have explored every option.

  • Hi   and welcome to our group

    I have spoken to you before when you first posted in the community and am glad you have found us in this group, although sorry of course to see what you are being faced with after today’s call.

    I can completely understand your wish to explore all options, that’s quite natural, and it is of course possible to seek a second opinion although that may delay things. You have summed it up in saying that your wife’s health is paramount, and although it might not seem so right now, the doctors will be making the most appropriate decision on the action needed based on what they have found. 

    A radical hysterectomy would be the standard course of action with this type of cancer diagnosis and you have mentioned a “large” tumour. A trachelectomy may not be possible with a large tumour, but you do need to have a full explanation of the reasons why it is not the first choice of treatment for your wife. Egg harvesting can take time, but from what you have said, this is also not going to be an option. Again you need to ask the reasons for this to be assured that you have all the information you need to make an informed decision.

    I completely appreciate that you will be devastated at the thought of a radical hysterectomy, but a team of specialists will have come to this decision based on the evidence of tumour size and location, type of cervical cancer and the scan results. It is not simply one doctor reaching a conclusion, so I’m not sure that the decision would be reconsidered, given that they are offering the best potential for a successful outcome for your wife. 

    Adenocarcinoma is less common than squamous cell carcinoma, and you could ask if that has a bearing on the need for surgery to happen quickly. I also had adenocarcinoma, although a higher stage than your wife, so wasn’t able to have surgery at diagnosis. It might be a good idea to go to any meeting armed with a list of questions you need answering and be satisfied that you receive answers to them all, even if they may not be the ones you hope to hear.

    The doctors’ concern is to remove the cancer and treat your wife in the most effective and appropriate way possible-they are following internationally established guidelines for the treatment of cervical cancer to give your wife the best possible chance of survival. That is their absolute priority. 

    You are in a very difficult position, given your desire to start a family, but it is an awful factor in the treatment of this disease, be it surgery or chemoradiation, that it can take away a woman’s chance to have children.

    Have you got your next appointment with your wife’s consultant arranged yet? I hope it’s soon and that you can get all the information you need, Please feel free to keep posting in the group with any questions or concerns. Obviously as cancer patients ourselves we are not medically qualified, but we do have advice and experience to share based on the treatments we have gone through ourselves, and we are here for support for both you and your wife. 

    Take care

    Sarah xx


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  • We were told we will be contacted within a fortnight to meet with consultant. You have confirmed everything we were told and I've read. I need to know we are armed with all the info though and that every option was consideted.

    Thanks again for getting in touch.

  • You absolutely need to be sure you have all the information you need, and for the consultant to confirm that every potential option was explored in coming to their decision. Waiting for appointments is very stressful as we all know, but once you have more details and the rationale explained, I hope you’ll find things become a little easier to come to terms with. 

    Sarah xx


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  • Hi Steve,

    I am quite shocked that they didn’t offer you the possibility that of freezing the eggs as your wife is only 1b. I was provided with the option even though I was 2b adenocarcinoma and the spread rate is similar to squamous cells. You might be able to ask more on this, I am just wandering that it might be that the tumour is quite big and blocks the cervix so the docs cannot have access to retrieve the eggs??

    If you are open minded there are options to have a family, personally I am going through surrogacy currently with my husband with donor eggs.

    hope all the best with your wife.

    xxx

  • Hi Maria,

    Thanks for getting in touch. Yesterday when the oncology nurse called and mentioned the radical hysterectomy it was an absolute sucker punch. My wife literally was physically sick and i was in full panic and crying. My wife adked they end the call and told me it was too much frnher to keep asking questions.

    I do believe the tumour may be quite large but the nurse said that salvaging eggs causes quite a delay (no furthrt details). Aftet dhe asked what gyno told us Insaid he suspected confidently 1b. Yesterday she said to me that she didnt have discussions in terms of stages but that she confirmed it was an isolated tumour.

    Also they have come to this decision re radical hysterectomy after their meeting however we just received a letter inviting us for PET CT scan in Glasgow next week. This put my wife into a massive panic attack today as she feels its all been too much too soon.

    I can't get her tonspeak to anyone but shenhas said she needs her own time to digest it.

    I am going to re-contact oncology over the coming days for more clarity about decision making and ask for some documentation as my wife wont go to hospital now due to her panic.

    Ive also.asked generally what treatments are on the table in first place in case a seat nd opinion is warranted to save our fertility options.

    I seem to be posting on her non stop and also speaking to the nurse clinicians but its the only thing stopping me panicking and falling apart more.

    Even though im there hopeless i hope me being there is helping her.

  • Hi Steve,

    I can understand that it is a sock for everyone when you hear the c word however I would like to reassure you that that this type of cancer is curable even at advance stages thus it is quite fortunate that you find it at early stage. It looks that you are at a very initial stage of the process which most of the time it is the most difficult one as you don’t have a clear direction for the treatment. Looking my journey, I had an MRI and a PET scan that I have been staged and then I had an EUA ( examination under anaesthesia) during which the surgeon checked if it can be surgically removed as you don’t want to leave any pieces behind during the hysterectomy. In my case it was concluded that it was not operational so I undertook chemo/ radiotherapy and brachytherapy. It wasn’t so bad as it sounds and as a bonus you don’t loose your hair. It is a tough journey in anyway but she will get through it. I think what she needs is some time to digest and let her take all the decisions with regards to her body. You just need to be there to support her and I can tell you she will need the support not only emotional but physical as well.

    I hope all the best with the treatment and to have a stage pretty soon.

    xxx

  • Hi  

    I wonder if I could ask you what you mean by saying that advanced stages of cervical cancer are curable, ie what stages you are considering to be advanced? Thanks

    Sarah xx


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  • Hi Sarah,

    mine was 2b locally advanced CC. But I know some ladies from Jos  that they had stage 3 and the treatment that went through was for NED afterwards and not for control.

    xxx

  • Hi  

    I’m sorry to read your wife and yourself are still in such a panic. Personally I think it’s unhelpful to give information over the phone like this, it’s much better to receive news on a face to face basis.

    The PET CT scan is a typical part of a diagnostic process, so it would be important for your wife to attend this. While the consultant has identified a tumour in the cervix, it is important to establish that the cancer has not gone anywhere else, for example via the lymphatic system, as this would rule out surgery as an option and the pet scan is used to determine this.

    My original gynaecologist told me I would be having a radical hysterectomy, but subsequent scans ruled this out as an option so it is important to have a full picture before a final decision on the right treatment is determined. It is really important to have this scan completed.

    I do understand how scary all of this having been in this situation and I hope once your wife has time to process things she will be able to go for the scan. The sooner all the tests are carried out, the sooner the plan can be decided. 

    Sarah xx


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  • Hi  

    Thanks for clarifying that for me. 

    Sarah xx


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